In September 2007, almost two years after starting this Blog, I added a counter to see if anyone was actually reading this and if so, how many. I started off by setting the count at 100 because I didn’t want to be embarrassed if it sat at zero, or at least under ten, for months. There is an option to put a blocker cookie for myself so it won’t count me every time I come to the blog or post to it. I contemplated not blocking myself so if the number stayed low I could keep visiting myself to get the count up. Hmm, that almost sounds illegal. But I did set the blocking cookie so my visits don’t count.
I am amazed, and humbled, at how many people are reading, well, at least visiting this site. As of earlier this morning, 15,000 visits in the last year and a half! As time goes by, the number of daily visitors increases. I am now averaging 47 visitors a day and Easter Monday it was 85. Because so few folks actually leave comments, this is a way for me to know if people visit. Of course, in comparison to some of my fellow bloggers, this is a relatively small number, but I am still amazed. (Perhaps some of my fellow bloggers keep visiting their own Blog to drive the numbers up – HA!) To keep track of the numbers, I chose the free version of StatCounter. You can see the actual count at the bottom of the far right column of this Blog. The free version limits the information it gives me to the last 500 visitors, but it still tells me much.
Although I can’t collect personally identifying information (and I would have no need to do that), there is a lot of information I can see. For instance, it shows the country and often the state and city visitors come from – although it is not totally accurate as it depends where the Internet provider’s server is located. When I first started using the counter, there was someone from South Africa that checked in fairly often. My youngest daughter would read something I had written and then complain that the person in South Africa knew about it before she did. Out of the last 500 visitors right now, 279 are from the USA. The others, in alphabetical order, are from:
Antigua and Barbuda,
Australia,
Botswana,
Bulgaria,
Canada,
China,
Denmark,
Egypt
France,
Germany,
Ghana,
Hong Kong,
India,
Ireland,
Israel,
Italy,
Japan,
Malaysia,
New Zealand,
Philippines,
Poland,
Republic of Korea,
Russian Federation,
Saint Kitts and Nevis,
Saudi Arabia,
Serbia and Montenegro,
Sweden,
Taiwan,
Ukraine,
United Arab Emirates,
United Kingdom,
and… South Africa! There are also 16 visitors who are from unknown places, somehow surfing in stealth mode, I assume. You can’t imagine how humbling and overwhelming it is for me to realize that people from all over the world have read or are reading my Blog. I am ashamed to admit there are two or three of those countries listed I would have difficulty finding on a map.
StatCounter also tells me how folks get to my Blog. Many come from clicking links on other sites and Blogs such as ACOR, CLL Forum, CLL Christian Friends, and many of the Blogs listed here in the right column, along with a few others not listed. Many just come here directly because they type in (or have bookmarked) the address. It tells me there was no referring link.
However, a great many, almost half, arrive as a result of searches on Google and other search engines. These are the folks that give me pause because I realize folks are coming here looking for answers and information to help them with their disease. All I can do is write about my experience and sometimes give links to other places with more help.
99.9% of the searches have to do with CLL or SLL. I know this because I can actually see what is put into the search engine and it also tells me which page, or post, the visitor was directed to. The most popular, by far, other than the normal home page, is the post on itching because so many folks are searching for answers concerning itching, rashes, and swelling with CLL. Just about every itching body part with CLL has been searched. Of the last 500 visits, 128 were directed to my post about itching. I just wish I had definitive answers for those seeking itch relief other than to say go to a dermatologist and get checked out. In my case I suspect my first huge bout with itching and rash was a delayed Rituxan reaction and then the last big bout may have been from formaldehyde in new jeans. The second most popular post is one I wrote back in 2005 about treatment options. Until I wrote the itching post, the treatment option post was consistently the most popular. The fatigue post and the first time I wrote about IVIg infusions are also popular.
Some of the search terms are heartbreaking as people are dealing with serious issues for themselves or their loved one. Some search terms are funny, and a few searches I wonder how they got directed here. I have been thinking of writing about this subject for several months, so I have been collecting the search terms used to get here. Let me give you some examples of the more unusual ones, typed just the way they were put into a search engine, followed by my comments:
Cinnamon/CLL – well that is a different flavor of the disease, I guess. This was searched for several times.
Leukemia back pain burning tingling feet vomiting – the poor fellow is really ill if his feet are vomiting.
I’m a guy I want to modeling – and you are looking to me for advice? Have you seen me???
CBC done six months ago could I still have leukemia – Sure could, my blood test was done three weeks ago and I still have it.
How much pain would you suffer to get to heaven – you don’t have to suffer pain to get to heaven. See my Easter post from this year.
Lower back itch spleen – That is a problem. Your spleen is up front, on the left, protected by your ribs – unless it is enlarged from CLL and then it extends below your ribs.
CLL oxygen exercise – you are asking ME about exercise? You really don’t know me, do you?
Numb butt – Call me any more names and I will have to ask you to leave.
Numb scalp leukemia – Well that is better than the last one.
Lymphocytic leukeamia in horses – Well, I have been called one particular end of a horse, but I don’t know about this.
Can sleeping problems, bruise type mark, dry lips be indicator of leukemia? – I guess so, but maybe you are snoring with your mouth open and your wife keeps punching you.
Unexplained painful spots in mouth before my period? -- Umm, not my area of expertise.
Golden heart god saw you getting tired 1996 – Is LSD still popular or are you on something else?
The lymph glands in my neck really hurt and a pin when touched on my back in between my shoulder blades what is this a sign of? -- That someone is sadistically torturing you with pins.
Stress test radioactive grandson – WHAT? If my grandson was radioactive, I would need a stress test, too.
Small lymphocytic lymphoma how to make it worse – Why, oh why would you want to make it worse? I am trying to make it better!
Rituxin made of ground up rats? -- Ewww. Not really. But Rituxan is made somehow with mouse proteins or Chinese hamster ovaries – really.
Los vagas cll girls – Man, I bet you were disappointed when you got to my blog. It would help if you learned to spell or at least watch the typos.
The wonderful, fabulous author John Wagner who is loved and adored by his wife and kids and grandchildren – OK, OK, I made that one up myself.
I have a lot more examples, but you get the idea. The sad thing is because I have used a lot of different terms in this post, many more folks will be directed to this page. If you are one, I hope I didn’t make you angry as you searched for legitimate answers.
For those searching for CLL/SLL answers, let me give you a couple of tips. First of all, be sure to check out Chaya’s sites. If you are newly diagnosed, start with http://www.clltopics.org/ and on the main page look over to the right for the link for newly diagnosed. There is a wealth of information there. Second, search Dr. Terry Hamblin’s Blog HERE. David Arenson’s Blog HERE is also a wealth of information. Then, try a search of CLL sites, HERE. Enter your terms and it will search many CLL related sites. If you see something in one of my posts, look at the labels at the bottom of the post and click a word and all posts related to that label will pop up. Finally, you can always do a general search my Blog and see if I have written anything helpful. Look up at the top left of this page. Type your terms into the box and click on “SEARCH BLOG.” Of course, if you are not already a member, I would invite you to join http://www.cllforum.com/ and the Christian site http://www.cllcfriends.com/. Both of these sites are wonderful sources of education and support. http://cll.acor.org/help.htm is another information and support place to go and join a discussion group (on the help page look over on the far right for the link on how to join). In all three you can ask your questions and members will try to help you out. If nothing else, you will find folks who know what you are going through. I also have some other links and blogs listed here over on the right that can be very useful to you.
Although I know folks are visiting, I also enjoy reading your comments. So if you have time when you visit, take a moment and say howdy by clicking on the comments link at the bottom of the individual post. I promise I won’t make fun of you – unless you are the one looking for “los vagas cll girls.”
Showing posts with label rituxan. Show all posts
Showing posts with label rituxan. Show all posts
Monday, April 20, 2009
Monday, July 28, 2008
Three Months? Nope, I'll Take TWO Years! -- and still counting!
July 2006, after 8 rounds of chemotherapy, my doctor said my body needed a break and we were going to stop the chemo for a while. I hadn't achieved remission, but, after a great initial response, the later infusions were making little positive difference. My doctor said we would wait three months and perhaps we could squeeze six months out of it before starting chemo again and he was pushing for stronger stuff.
I had already resisted the initial treatment he wanted and what the specialists at MD Anderson had suggested -- FCR -- Fludara (fludarabine), Cytoxan (cyclophosphamide) and Rituxan (rituximab). I wrote about this at the time, but my main concern was the increased risk of infection because the fludarabine wipes out the T cells to a very low level, just like someone with a full AIDS diagnosis. And, it can take a couple of years for the T cells to recover. After lots of research and a compromise with my doctor which I also wrote about at the time (January 11, 2006 entry), I went with Cytoxan, Rituxan and Prednisone. The protocol usually includes Vincristine, but it often causes neuropathy and since I am diabetic and have a little neuropathy already, we left that out as he was afraid of permanent damage. My doc called it a wimpy treatment but said he would honor my wishes but when it failed he wanted to go with FCR. After eight rounds I was beginning to doubt my decision, especially after a bone marrow biopsy showed I still had 50% cancer cells in my marrow (it was 90% infiltrated 7 months before chemo began).
Well, fast forward two years and I still have not had any more chemo and I am more than pleased with the results I got. No, I didn't achieve remission, but I got a great partial response and, what I call, a wonderful intermission! There are folks whose actual remission didn't last two years. I know I am moving closer to treatment again, but I think it is great. Of course I have to rub it in a little with my doctor and he admits he is very surprised. What do I attribute it to? I firmly believe it is all the prayers of others on my behalf. The Great Physician's timetable is very different from my earthly physician's.
I have been getting IVIg infusions every two months now and that is keeping infections away so the all day inconvenience and the horrible cost to my insurance is worth it. Last year, before starting IVIg infusions, I had nine infections, including pneumonia twice, this year only one slight cold and a very strange incident a week and half ago while on vacation in NY. I will write about that in a day or two. I think the IVIg is also helping to keep my platelets up around 100, so that is an added bonus.
I go down to MD Anderson for a follow up appointment at the end of August. Even though my neck nodes are giving me more and more discomfort as they continue to grow, I think I will get another pass on a treatment recommendation. We'll see.
I had already resisted the initial treatment he wanted and what the specialists at MD Anderson had suggested -- FCR -- Fludara (fludarabine), Cytoxan (cyclophosphamide) and Rituxan (rituximab). I wrote about this at the time, but my main concern was the increased risk of infection because the fludarabine wipes out the T cells to a very low level, just like someone with a full AIDS diagnosis. And, it can take a couple of years for the T cells to recover. After lots of research and a compromise with my doctor which I also wrote about at the time (January 11, 2006 entry), I went with Cytoxan, Rituxan and Prednisone. The protocol usually includes Vincristine, but it often causes neuropathy and since I am diabetic and have a little neuropathy already, we left that out as he was afraid of permanent damage. My doc called it a wimpy treatment but said he would honor my wishes but when it failed he wanted to go with FCR. After eight rounds I was beginning to doubt my decision, especially after a bone marrow biopsy showed I still had 50% cancer cells in my marrow (it was 90% infiltrated 7 months before chemo began).
Well, fast forward two years and I still have not had any more chemo and I am more than pleased with the results I got. No, I didn't achieve remission, but I got a great partial response and, what I call, a wonderful intermission! There are folks whose actual remission didn't last two years. I know I am moving closer to treatment again, but I think it is great. Of course I have to rub it in a little with my doctor and he admits he is very surprised. What do I attribute it to? I firmly believe it is all the prayers of others on my behalf. The Great Physician's timetable is very different from my earthly physician's.
I have been getting IVIg infusions every two months now and that is keeping infections away so the all day inconvenience and the horrible cost to my insurance is worth it. Last year, before starting IVIg infusions, I had nine infections, including pneumonia twice, this year only one slight cold and a very strange incident a week and half ago while on vacation in NY. I will write about that in a day or two. I think the IVIg is also helping to keep my platelets up around 100, so that is an added bonus.
I go down to MD Anderson for a follow up appointment at the end of August. Even though my neck nodes are giving me more and more discomfort as they continue to grow, I think I will get another pass on a treatment recommendation. We'll see.
Friday, November 16, 2007
You Surprised Me, Doc
Wow, another two weeks and much has happened. I had my first IVIg infusion a week ago Monday. I tolerated it pretty well. We arrived a little before 8 a.m. and the infusion was started just about 9 a.m. We had to wait for the pharmacy to mix it and deliver it to the infusion room. I took two Tylenol tablets and was infused with premeds of Benadryl and a steroid (I forget which one). They watch you very closely for any reaction, particularly watching for the blood pressure to go too high. Well, of course I never do anything the expected way and my blood pressure dropped way too low -- twice, maybe three times but the one time it was 40 over 20 and the nurse didn't believe that one. I was reclining in the infusion lounger chair so they made me sit up. But eventually my pressure came up closer to normal and stayed there so they were able to slowly increase the infusion rate. I slept most of the time. I had the bag of immunoglobulin antibodies and was done and out of there by 2:30 in the afternoon. That evening I did have a bad headache and had a headache most of the week. That is a common side effect. It really must have done some good because Jimmy, our grandson who lives with us, was sick all week and our other grandson, Jonathan, my daughter, Cheri, and son-in-law, Marc, were all sick with very bad colds and I did not catch it! My next infusion is in December.
Then this past Monday, I had an appointment at MD Anderson in Houston with a CLL specialist, Dr. William Wierda. We drove down on Sunday afternoon, Veteran's Day, which was also Cheryl's birthday. (We all went out to dinner together after church to celebrate.)
I thought the appointment with Dr. Wierda was very productive. (This was my fourth time seeing him.) My local doc thinks I might need to start chemo again, but Dr. Wierda agrees with Cheryl and me and doesn't think it is quite time yet. He does agree we are moving in that direction, though. When discussing the reasons my doc thinks it might be time, we talked about my widespread swollen nodes in every region -- neck, chest, stomach, and groin. I told him they mostly measured 3 cm by CT scan up from 1 to 1.5 cm last January. He said most of the time they don't treat just because of swollen nodes until they are over 7 cm. I had not heard that before. He asked how low my platelets had gotten (only in the 80s this time) and Monday they were 102.
He said before we did any treatment he would want to rerun most of the prognostic tests, with the exception of finding out if I am mutated or not as that doesn't change. He said he particularly wanted to check to see if I picked up any new chromosomal deletions. He then said, "Of course your body didn't listen to all those good prognostic indicators the first time around. I remember giving you all good news and saying you probably wouldn't need treatment for a very long time." I asked him if he thought there were prognostic indicators that we don't know about since I had all the best ones and needed treatment so quickly. He said of course there are and we just haven't found them yet. He said that is the only thing that explains the odd cases like me and those folks that have poor indicators and yet go without treatment.
I did tell him my suspicions that I may have had this for up to ten years but there had not been a CBC done. He said he really doubted I had it that long because of how quickly I progressed after diagnosis.
Then he shocked and surprised me. He said that when it is time for the next treatment, he wants me to start the process of preparing for a stem cell transplant. He could tell I was surprised, but he said that didn't mean we would do it then. He explained it takes a very long time to find a donor and get things prepared and set up. He wants to get the process started and have me meet with a transplant doctor/team and make sure I am a good candidate. I asked about my age and he said it used to be they wouldn't do it over 50 or so, but by today's standard I am relatively young (62) - bless his little heart.
Since Monday I have thought about this quite a bit and to be honest, it is very scary. It is a rough procedure with a fairly high (in my opinion), mortality rate. Basically they destroy your bone marrow with heavy chemo and infuse the stem cells and hope they engraft and take over. Recovery time can be quite long. Now I do know some folks that are doing very well and had a relatively "easy" time (remember, I said relatively). In fact, I met one of those guys, Paul, in person Monday. But just today I was catching up on some blogs and there are folks that are a couple of years past transplant still dealing with lots of problems and graft vs. host disease. I also know of several who did not survive the process, including one dear lady, Phyl, whose journal is listed over on the right side, here. We also visited with another fellow while there, a former member of our church, who had a stem cell transplant and his sister was the donor. He was supposed to come home three months ago, but he is still dealing with major problems. He hopes to be home by Christmas. His transplant was in May.
Dr. Wierda said he was very glad to see I had started IVIg. I asked him about my level not being below 300 (low 400's) and if it really fit the criteria. He said absolutely. Anything below 700 with multiple infections indicated the need. He said to do them monthly, but have my doc keep checking the levels and once they hit 700 to space the treatments out to just maintain a level over 700.
He said again he would strongly recommend Fludarabine, Cyclophosphamide (Cytoxan), Rituxan (FCR) for my next chemo regime if I didn't participate in a clinical trial. In fact, the two trials he mentioned that I would qualify for are adding stuff to FCR. (One of the trials is a double blind study and some folks would only get a placebo added to the combination of chemo drugs.) I reiterated that I was hesitant to do FCR because of how Fludarabine depletes the T cells and leaves you vulnerable to infections. Since this is a B cell cancer, I did not like the risk. He then said slowly, "and how many infections have you had this year?" Umm, nine. He said the leukemia was depleting my immune system and causing me to get these infections. The cancer is still growing, crowding out the healthy bone marrow. FCR would deplete the T cells but they would start to come back in six months to a year and the main danger of infections would be past. (Now Dr. Hamblin has said several times that NOTHING will completely restore the immune system for those of us with CLL.) Also the VAST majority of folks with FCR are getting a five year remission and many are getting even longer remissions. For the first time, it started to make sense. He didn't say it again this time, but I knew he wished I had done FCR the first time. However, I don't regret using my choice of Cytoxan, Rituxan and Prednisone the first time as I have now gotten 16 months of a partial response. Not a bad intermission. Basically it is the same thing, just without Fludarabine.
The final surprise, instead of saying "see you in a year," which he has said the last two times, he said he would like to see me again in two months and then changed it to three months. I didn't ask, but I had the impression that he thought I might be real close to needing treatment by then. We'll see. But at least I will be getting through another holiday season without being on chemo.
And finally, report cards came out this week for Jimmy. He had 5 A's, one B and one C!!! The best report card ever. He didn't even show it to us, Cheryl found it in his school bag. We are so very, very proud of him and we all went out to dinner to celebrate. He chose the restaurant. Here he is at his last football game.
Then this past Monday, I had an appointment at MD Anderson in Houston with a CLL specialist, Dr. William Wierda. We drove down on Sunday afternoon, Veteran's Day, which was also Cheryl's birthday. (We all went out to dinner together after church to celebrate.)
I thought the appointment with Dr. Wierda was very productive. (This was my fourth time seeing him.) My local doc thinks I might need to start chemo again, but Dr. Wierda agrees with Cheryl and me and doesn't think it is quite time yet. He does agree we are moving in that direction, though. When discussing the reasons my doc thinks it might be time, we talked about my widespread swollen nodes in every region -- neck, chest, stomach, and groin. I told him they mostly measured 3 cm by CT scan up from 1 to 1.5 cm last January. He said most of the time they don't treat just because of swollen nodes until they are over 7 cm. I had not heard that before. He asked how low my platelets had gotten (only in the 80s this time) and Monday they were 102.
He said before we did any treatment he would want to rerun most of the prognostic tests, with the exception of finding out if I am mutated or not as that doesn't change. He said he particularly wanted to check to see if I picked up any new chromosomal deletions. He then said, "Of course your body didn't listen to all those good prognostic indicators the first time around. I remember giving you all good news and saying you probably wouldn't need treatment for a very long time." I asked him if he thought there were prognostic indicators that we don't know about since I had all the best ones and needed treatment so quickly. He said of course there are and we just haven't found them yet. He said that is the only thing that explains the odd cases like me and those folks that have poor indicators and yet go without treatment.
I did tell him my suspicions that I may have had this for up to ten years but there had not been a CBC done. He said he really doubted I had it that long because of how quickly I progressed after diagnosis.
Then he shocked and surprised me. He said that when it is time for the next treatment, he wants me to start the process of preparing for a stem cell transplant. He could tell I was surprised, but he said that didn't mean we would do it then. He explained it takes a very long time to find a donor and get things prepared and set up. He wants to get the process started and have me meet with a transplant doctor/team and make sure I am a good candidate. I asked about my age and he said it used to be they wouldn't do it over 50 or so, but by today's standard I am relatively young (62) - bless his little heart.
Since Monday I have thought about this quite a bit and to be honest, it is very scary. It is a rough procedure with a fairly high (in my opinion), mortality rate. Basically they destroy your bone marrow with heavy chemo and infuse the stem cells and hope they engraft and take over. Recovery time can be quite long. Now I do know some folks that are doing very well and had a relatively "easy" time (remember, I said relatively). In fact, I met one of those guys, Paul, in person Monday. But just today I was catching up on some blogs and there are folks that are a couple of years past transplant still dealing with lots of problems and graft vs. host disease. I also know of several who did not survive the process, including one dear lady, Phyl, whose journal is listed over on the right side, here. We also visited with another fellow while there, a former member of our church, who had a stem cell transplant and his sister was the donor. He was supposed to come home three months ago, but he is still dealing with major problems. He hopes to be home by Christmas. His transplant was in May.
Dr. Wierda said he was very glad to see I had started IVIg. I asked him about my level not being below 300 (low 400's) and if it really fit the criteria. He said absolutely. Anything below 700 with multiple infections indicated the need. He said to do them monthly, but have my doc keep checking the levels and once they hit 700 to space the treatments out to just maintain a level over 700.
He said again he would strongly recommend Fludarabine, Cyclophosphamide (Cytoxan), Rituxan (FCR) for my next chemo regime if I didn't participate in a clinical trial. In fact, the two trials he mentioned that I would qualify for are adding stuff to FCR. (One of the trials is a double blind study and some folks would only get a placebo added to the combination of chemo drugs.) I reiterated that I was hesitant to do FCR because of how Fludarabine depletes the T cells and leaves you vulnerable to infections. Since this is a B cell cancer, I did not like the risk. He then said slowly, "and how many infections have you had this year?" Umm, nine. He said the leukemia was depleting my immune system and causing me to get these infections. The cancer is still growing, crowding out the healthy bone marrow. FCR would deplete the T cells but they would start to come back in six months to a year and the main danger of infections would be past. (Now Dr. Hamblin has said several times that NOTHING will completely restore the immune system for those of us with CLL.) Also the VAST majority of folks with FCR are getting a five year remission and many are getting even longer remissions. For the first time, it started to make sense. He didn't say it again this time, but I knew he wished I had done FCR the first time. However, I don't regret using my choice of Cytoxan, Rituxan and Prednisone the first time as I have now gotten 16 months of a partial response. Not a bad intermission. Basically it is the same thing, just without Fludarabine.
The final surprise, instead of saying "see you in a year," which he has said the last two times, he said he would like to see me again in two months and then changed it to three months. I didn't ask, but I had the impression that he thought I might be real close to needing treatment by then. We'll see. But at least I will be getting through another holiday season without being on chemo.
And finally, report cards came out this week for Jimmy. He had 5 A's, one B and one C!!! The best report card ever. He didn't even show it to us, Cheryl found it in his school bag. We are so very, very proud of him and we all went out to dinner to celebrate. He chose the restaurant. Here he is at his last football game.
Tuesday, March 28, 2006
My Inner Mouse Finally Showed Up
Well, I knew it had to happen sometime. You know that one of the chemicals that they give me is Rituxan and that is made from Mouse proteins or Chinese Hamster ovaries. Yesterday, soon after they started the Rituxan, I felt a strange popping on the top of my head. I called to Cheryl to look and, sure enough, mouse ears had popped out of the top of my head. I immediately put on my "Faith, Love, Hope, Win" hat to try to contain them, but they popped through that too. I told Cheryl to grab the camera so we could document this strange event. The evidence is here for all to see. Do you think we might have enough for a law suit? What's next? A tail? Only a cheese diet? Litters of critters? Will I have to sleep in a wire cage? Already I can't pass a trash can without an overwhelming desire to rummage through it. I guess this is still better than nausea or hair loss. Sigh, the things we have to put up with to beat Cancer!
Actually, the chemo went great again. Only this strange side effect documented above. You know, I think those ears make me look fat! I intentionally put on weight before the start of chemo because they said I wouldn't feel like eating and I would have to fight to keep weight on. They were wrong again. I have gained weight after each chemo round and am now almost 25 pounds heavier than my low weight last fall. Guess I will have to really work on that. I think some of it is the effects of the steroids and some of it is because I can't keep my butt out of the refrigerator or the M&Ms and cookies that my Mom likes to eat. We don't usually keep candy and snacks in the house, but Mom likes them, so we have them around.
I only slept an hour last night, but I did sleep most of the day yesterday. They start off with a Benadryl infusion and that really did a bigger job on me than usual. I couldn't get through the movie I brought to help pass the time and then I slept for several hours after we got home too. After the Benadryl wore off, I guess the steroids took over. This morning I started with the Prednisone tablets so I will try an Ambien tonight to try to get some sleep. If all else fails, I can overdose again on Phenegren -- NOT!
I had the two Tylenol to begin, then the bag of Benadryl, then the Rituxan, then the anti-nausea bag with the bag of steroids and then the bag with Cytoxan. We started later in the morning, but we were still done by 3:30, so not too bad. Cheryl left about 11 to do some shopping and brought lunch back and woke me up to eat it. Chicken sandwich, but no cheese - hmm.
My blood work from yesterday continues to look good! In fact my neutrophils went up. Now this is a different lab and they reported them as granulocytes, so I don't know how much difference that makes. Anyway, for those of you who understand this stuff, the results are as follows with this labs normal range:
WBC 5.0 Range 4.1 - 10.9 YEA!
LYM 2.8, 55.7% Range 0.6 - 4.1 and 10.0% - 58.5% Double YEA!
GRAN 2.0 Range 2.0 - 7.8 YEA (I think)
RBC 4.08 Range 4.20 - 6.30 Low, but not too bad
PLT 94 Range 140 - 440 Low, but not too bad and up from my lowest
Next blood tests will be April 10th and next Chemo with blood tests will be April 17th.
Again, thanks so much for all your prayers. Everything is going much better than I had imagined. I am continuing to work from home quite a bit and this also keeps me away from all the folks who keep getting sick at work. There have been many with flu-like illnesses that last for days and I have escaped it so far.
Actually, the chemo went great again. Only this strange side effect documented above. You know, I think those ears make me look fat! I intentionally put on weight before the start of chemo because they said I wouldn't feel like eating and I would have to fight to keep weight on. They were wrong again. I have gained weight after each chemo round and am now almost 25 pounds heavier than my low weight last fall. Guess I will have to really work on that. I think some of it is the effects of the steroids and some of it is because I can't keep my butt out of the refrigerator or the M&Ms and cookies that my Mom likes to eat. We don't usually keep candy and snacks in the house, but Mom likes them, so we have them around.
I only slept an hour last night, but I did sleep most of the day yesterday. They start off with a Benadryl infusion and that really did a bigger job on me than usual. I couldn't get through the movie I brought to help pass the time and then I slept for several hours after we got home too. After the Benadryl wore off, I guess the steroids took over. This morning I started with the Prednisone tablets so I will try an Ambien tonight to try to get some sleep. If all else fails, I can overdose again on Phenegren -- NOT!
I had the two Tylenol to begin, then the bag of Benadryl, then the Rituxan, then the anti-nausea bag with the bag of steroids and then the bag with Cytoxan. We started later in the morning, but we were still done by 3:30, so not too bad. Cheryl left about 11 to do some shopping and brought lunch back and woke me up to eat it. Chicken sandwich, but no cheese - hmm.
My blood work from yesterday continues to look good! In fact my neutrophils went up. Now this is a different lab and they reported them as granulocytes, so I don't know how much difference that makes. Anyway, for those of you who understand this stuff, the results are as follows with this labs normal range:
WBC 5.0 Range 4.1 - 10.9 YEA!
LYM 2.8, 55.7% Range 0.6 - 4.1 and 10.0% - 58.5% Double YEA!
GRAN 2.0 Range 2.0 - 7.8 YEA (I think)
RBC 4.08 Range 4.20 - 6.30 Low, but not too bad
PLT 94 Range 140 - 440 Low, but not too bad and up from my lowest
Next blood tests will be April 10th and next Chemo with blood tests will be April 17th.
Again, thanks so much for all your prayers. Everything is going much better than I had imagined. I am continuing to work from home quite a bit and this also keeps me away from all the folks who keep getting sick at work. There have been many with flu-like illnesses that last for days and I have escaped it so far.
Thursday, March 09, 2006
Third Chemo Week Now Have a Cold
Had blood work again just before the treatment and saw the doctor. Counts were down again and he wasn't as pleased that they are bouncing like that. Neutrophils that fight infection are getting lower and that may be why I have caught a cold yesterday. Nose and chest. He said we may have to do all six rounds to try to get the numbers to even out and hold steady. WBC was in the normal range, but lymphocyte percentage up. We discussed my not sleeping on Prednisone and discussed the Benadryl along with 3 mg of Melatonin. He offered a sleeping pill but I told him I wanted to try this first. The chemo infusion went without a hitch. No reactions. Started about 9 a.m. with five different bags of stuff. First Tylenol pills, then Benadryl infusion that makes me go to la-la land, then the big bag of Rituxan (my mouse parts), then a bag of steroids, then a bag of anti-nausea medicine, all followed by my bag of Cytoxan chaser. A bag of Saline was going steady the whole time. At least it all goes through my portacath in my upper chest, so I didn't have to get re-stuck each time. We were done a little after 2 in the afternoon. Nothing like the fresh smell of chemo in the morning. Well Monday night I got 1 hour of sleep finally at 9 a.m. Tuesday morning. Tuesday night I got two hours sleep starting at 3:30 a.m. I went to work. So yesterday I called and asked for a prescription. He gave me Ambien that is supposedly strong and works quick. My cold started coming on in the afternoon. I took the Ambien at 10 p.m. and went straight to bed. I was awake until after 1 a.m. and then woke up at 5:15. At least I got four hours sleep. I got up to get ready for work, but it was like I was in a fog and was very slow going. I finally got to work after 8 a.m. I am usually there at 7 a.m. Tonight I took it at 9 p.m and am waiting for it to kick in. It is now midnight and I am feeling nothing. Oh well. I did get some medicine to maybe help the cold. Now taking at least 24 pills a day this week, counting 8 pills of Prednisone, two anti-nausea a day, cold pills dissolved in mouth every thee hours, stomach pills, 2 heart pills, blood pressure pills, two kinds of cholesterol pills (3 pills), a fish oil pill for a different cholesterol, Benadryl, and then shoot up with insulin before meals. Now the sleeping pill. Tough to remember them all. Mom always said I was a pill growing up. Hmmm, wonder why I feel kind of drugged? ('Enter' key not working on the keyboard, so can't make paragraphs????) I did get permission to work from home on a course I am writing while I am doing the chemo. That will help. I should be able to get more done and then cat nap when I can. I think this will help. Please pray that I will start sleeping better and pep up and get back to my jolly old self. Thanks. Going to bed now and wait for the sandman to arrive. Hope he knows my address, we moved 10 years ago.
Wednesday, February 15, 2006
Round Two of Chemo
Sorry I am a little late in posting this update but I have been spending a lot of time (too much time) on a great new site for CLL survivors and caregivers, www.cllforum.com This site was started by a group of folks who are also on the ACOR site. This new site just serves a broader purpose and does not replace ACOR. This one is like a little community (growing fast) of friends to have FUN and share. Lots of different areas to post, even a fun game area.
Anyway, yesterday's chemo went fantastically well. When we got there they accessed my port (breast implant) and drew blood for testing. Then we waited for those results and then saw Dr. Netaji. He was so very pleased with the results. He asked me what I would hope my white count would be. I told him I would be happy with about 15,000 as they were 48,000 last time. He said they were 9,000! NORMAL RANGE! My lymphocytes had come down some, but were still at 80 percent. (I don't have the exact figures in front of me) and my platelets had dropped into the 70's. The steroids this week will bring the platelets and white count up temporarily. He was so pleased with the results of my "whimpy" choice of treatment (his words, remember he wanted the big guns drawn first), that he thinks maybe we will only do two more rounds after this instead of the planned four more. It was hard for me not to say, "I told you so." I wonder what my results would have been with my first choice of treatment? Oh well, I am pleased and I won't second guess that. Then he thinks we might do Rituxan maintenance every few months. I can handle that!
After talking with him, we moved to the infusion room to get comfy. I started off with two Tylenol and a bag of anti-nausea drugs, followed by a bag of Benadryl. After I was sufficiently loopy from the Benadryl, started the Rituxan (my little mouse parts). They started real slow because of the "shake and bake" reaction I had last time. At some point they added some steroids too, but I missed that while I was in la-la land. The Rituxan took several hours. When that was done, they added the Cytoxan, my chaser for the mouse coursing through my veins. (Getting harder and harder to pass up trash cans now and I really think I am beginning to get cravings for cheese :-o) We finished up about 3:30 or so and I had NO reactions of any kind. I even managed to watch a movie, "Hitch" on my new portable DVD player. Of course Cheryl drove home because I was still 'under the influence.' For supper, I added an insulin shot as my sugars were already off from the treatments, two Tylenol, two Benadryl, my four friendly Prednisone pills and the strong anti-nausea drug. This on top of the 8 other pills I normally take every day. They all did their job and had me surfing the web and joining my new cllforum most of the night. I did finally try to go to bed about 3 a.m. and napped on and off some. Cheryl commented that I was still staggering some last night. But officer, I only had just a few legal drugs in me. It must be that sneaky inner mouse.
Today was another good, wide-awake, slightly hyper day. Started my income taxes, but surfed the web and tried to fix my home network (didn't fix it). Still no reactions, and now none expected. Got the full 80 mg of Prednisone today and am now wide-awake typing away. Even two Benadryl tablets aren't winning the battle with Prednisone. I will be taking the Prednisone pills for five days, the strong anti-nausea drug regularly for four days, and then only when feeling nauseas. I am still planning to go to work tomorrow, so hopefully I will start to get slightly sleepy soon as I get up at 5:20 in the morning.
By the way, after that one day of hair coming out in little clumps a couple of weeks ago, it stopped -- until today. I think it is starting again. My sink was littered after only running my hands through it. They did say it would take about a month or so to start to lose it and it has been three and a half weeks, I think, since first treatment.
I go to see Dr. Netaji next Monday morning. Then, hopefully with his blessing, I will be heading out of town to Tyler, Texas, to help train our new course. If I can't make it, my work has a backup plan. There will be two of us training and they are having me drive my own car too so if I have to go back to the hotel early to lie down I can. I am so blessed to be working with the people I work with. They are a great bunch, sometimes a few are a little strange, but great. And hey, I like strange. I fit right in!
Well, now a little after 2 a.m. Central Standard time, so guess I will go lie on the couch and watch infomercials. Sometimes when I can't sleep in a hotel I put them on at low volume and I drift off to sleep. Hmm, maybe some CHEESE and crackers before I lie down. I could still get three hours of sleep. My feet are still doing a happy dance and God is in control!
Anyway, yesterday's chemo went fantastically well. When we got there they accessed my port (breast implant) and drew blood for testing. Then we waited for those results and then saw Dr. Netaji. He was so very pleased with the results. He asked me what I would hope my white count would be. I told him I would be happy with about 15,000 as they were 48,000 last time. He said they were 9,000! NORMAL RANGE! My lymphocytes had come down some, but were still at 80 percent. (I don't have the exact figures in front of me) and my platelets had dropped into the 70's. The steroids this week will bring the platelets and white count up temporarily. He was so pleased with the results of my "whimpy" choice of treatment (his words, remember he wanted the big guns drawn first), that he thinks maybe we will only do two more rounds after this instead of the planned four more. It was hard for me not to say, "I told you so." I wonder what my results would have been with my first choice of treatment? Oh well, I am pleased and I won't second guess that. Then he thinks we might do Rituxan maintenance every few months. I can handle that!
After talking with him, we moved to the infusion room to get comfy. I started off with two Tylenol and a bag of anti-nausea drugs, followed by a bag of Benadryl. After I was sufficiently loopy from the Benadryl, started the Rituxan (my little mouse parts). They started real slow because of the "shake and bake" reaction I had last time. At some point they added some steroids too, but I missed that while I was in la-la land. The Rituxan took several hours. When that was done, they added the Cytoxan, my chaser for the mouse coursing through my veins. (Getting harder and harder to pass up trash cans now and I really think I am beginning to get cravings for cheese :-o) We finished up about 3:30 or so and I had NO reactions of any kind. I even managed to watch a movie, "Hitch" on my new portable DVD player. Of course Cheryl drove home because I was still 'under the influence.' For supper, I added an insulin shot as my sugars were already off from the treatments, two Tylenol, two Benadryl, my four friendly Prednisone pills and the strong anti-nausea drug. This on top of the 8 other pills I normally take every day. They all did their job and had me surfing the web and joining my new cllforum most of the night. I did finally try to go to bed about 3 a.m. and napped on and off some. Cheryl commented that I was still staggering some last night. But officer, I only had just a few legal drugs in me. It must be that sneaky inner mouse.
Today was another good, wide-awake, slightly hyper day. Started my income taxes, but surfed the web and tried to fix my home network (didn't fix it). Still no reactions, and now none expected. Got the full 80 mg of Prednisone today and am now wide-awake typing away. Even two Benadryl tablets aren't winning the battle with Prednisone. I will be taking the Prednisone pills for five days, the strong anti-nausea drug regularly for four days, and then only when feeling nauseas. I am still planning to go to work tomorrow, so hopefully I will start to get slightly sleepy soon as I get up at 5:20 in the morning.
By the way, after that one day of hair coming out in little clumps a couple of weeks ago, it stopped -- until today. I think it is starting again. My sink was littered after only running my hands through it. They did say it would take about a month or so to start to lose it and it has been three and a half weeks, I think, since first treatment.
I go to see Dr. Netaji next Monday morning. Then, hopefully with his blessing, I will be heading out of town to Tyler, Texas, to help train our new course. If I can't make it, my work has a backup plan. There will be two of us training and they are having me drive my own car too so if I have to go back to the hotel early to lie down I can. I am so blessed to be working with the people I work with. They are a great bunch, sometimes a few are a little strange, but great. And hey, I like strange. I fit right in!
Well, now a little after 2 a.m. Central Standard time, so guess I will go lie on the couch and watch infomercials. Sometimes when I can't sleep in a hotel I put them on at low volume and I drift off to sleep. Hmm, maybe some CHEESE and crackers before I lie down. I could still get three hours of sleep. My feet are still doing a happy dance and God is in control!
Wednesday, January 25, 2006
My Inner Mouse
Sorry I didn't get yesterday's treatment posted, but it was a little rough. When I first got there, they inserted the needle into the port-a-cath and drew blood. The needle didn't hurt too bad going in but I am still bruised and sore from the surgery to put the line in. My blood work results weren't too different from last Wednesday, as I wouldn't expect them to be, however, I was not pleased that my platelets had dropped to 83.
Next I was taken into the infusion room, a large "L" shaped room divided into little pods of four reclining infusion chairs and two comfortable easy chairs for family members who may have come with the patient. I couldn't see around the "L," but I counted 20 chairs in five pods that I could see. Each pod also had a TV with video/DVD player. Because I was starting early, I think I was the first one in the room, but later in the day, just about every chair was filled. How sad.
First a very nice, very young nurse re-explained what they were going to be doing and what I could expect. I think one nurse was in charge of each pod as she was there all day, except for lunch. Then she gave me two Tylenol and then infused me with Benadryl through the IV. She sat and talked with me while the Benadryl made me loopier and loopier. I guess when she could tell my tongue was as thick as shag carpet and I was no longer making sense, and the Bendadryl bag was empty, it was time to start the Rituxan (made from mouse proteins). The Rituxan bag (a very large bag) started dripping very slowly along with a bag of Saline that was dripping faster. Every half-hour the dose was increased. Besides breakfast at home, I also drank a large cup of coffee, a V8 juice, and had bottled water there at my chair. The room was quite chilly and I asked my very young, very nice nurse how I was supposed to tell my shivering from cold to the chills that might be a reaction. She said I would know because the shivering will be quite strong. Within a half hour Cheryl covered me with a blanket as I reclined for the first of many short naps throughout the day from the Benadryl. Within an hour or so I had two blankets on me. About 11:30 or so my ears starting itching, but I didn't think too much of it. I told Cheryl I thought my inner mouse was trying to get out. Of course we both laughed pretty hard. She out of pity, I because of being drugged. About that time I had to take my half-hour trip to the restroom--remember I had been drinking a lot plus all the IV stuff coursing through me. I know it was a half hour because I timed it for right after each increase of the drip. This time I got in the restroom and it seemed very cold in there and I started shivering very hard. (I will spare you any further details of that trip.) I had also noticed my throat getting sore like from post nasal drip. I thought, great, now I am getting a cold. I had no sooner gotten back to my chair than I sneezed and my nose stuffed up to where I couldn't breath. My very nice, and very young nurse noticed this and came over and asked me what was going on. She stopped the mouse parts from flowing into me. Then my chest started to itch. She looked and it was red. She said this was all a reaction from the little mouse parts running through my veins and would go away in a little while because she stopped the infusion. She also chided me for not telling her about my itching ears. Well, none of these symptoms, other than the violent shaking in the restroom were what I had been warned about. Sigh. My very young, very nice nurse put in a call to Dr. Netaji for orders. About 45 minutes later, all symptoms were gone and they started up again a little slower than when it had been stopped. I think they increased it about every 15 minutes then. Cheryl walked down the street to Subway and got us a six-inch sub for lunch. She also brought back a large iced tea for me. My bathroom breaks were now coinciding with the 15-minute increase in IV drip. It wasn't long and the drip was really flowing. I was still chilly but not shaking violently. I think it was a little after three and we were done. All the way through they took my blood pressure and temperature every time they increased the dosage. Both were great, in fact my temp was always 97.something.
Cheryl drove home. I couldn't get warm in the car. She turned the heater up all the way, closed her vents and I had mine pointed right at me. I turned on the heated seats. My bottom got toasty but the rest of me was still cold. When we got home I laid on the couch, kept my jacket on and covered up with two blankets and pulled one of them up over my head. I just started shivering and couldn't stop. About 4:30 or so we took my temp and I had a fever. I took Tylenol as instructed. By 6:00 I was still shaking and my fever was up to 102.8. It stayed right around there and even though I was shivering, I kept managing to fall asleep. Sometime later in the evening, perhaps midnight, the shivering stopped, I felt warm and all the covers came off. I was still running fever, but not as high. About 3 a.m. I started sweating real bad and my fever broke. I went to bed.
At about 7:15 in the morning I got a call that a very dear man from the Sunday School class that I teach, Jimmy Jones, had passed away about an hour earlier. Apparently his heart gave out from complications of a surgery he had the past Thursday. I had visited him over the weekend in the hospital and he was quite weak then and the doctor said they were surprised he made it through the surgery. After the call, I got up out of bed and felt normal! I headed over to the hospital to be with his wife, Gene. Our wonderful pastor was there too. While we were there his family doctor came to pay his respects. What a wonderful Christian man. He said that he had been reading a book by Max Lucado last night and how Max wrote about death being a celebration of homecoming in heaven. I know Jimmy is celebrating! He spoke of it often in the past year as his health deteriorated. The man from the funeral home, whom Gene knew when he was a teenager but of course I can't remember his name, came just about the time I had to leave so I could make it to my second round of chemo on time. The pastor had prayer before I left and Gene, the pastor, the man from the funeral home, and I held hands in prayer at the foot of Jimmy's bed. Very comforting.
I got home, checked my blood sugar -- good as usual -- 87, ate a quick breakfast, and took my first 40 mg of Prednisone. We then headed for the clinic. My appointment was at 10 and I walked in about 10:03, whew! However we sat in the waiting room for a good 10 minutes so I guess I wasn't really that late. Today I was in a different location up in northern Austin. Much smaller, only 8 chairs I think. Again, a very nice, but slightly older nurse explained what they were going to be doing with the Cytoxan infusion (a true chemo-type drug). First they infused me with a bag of anti-nausea drug that would last about 12 hours. She said it saturates a gland in the brain so it doesn't recognize that the stomach is upset and wants to rid itself of poisonous stuff. She also said it would keep me awake tonight (along with the Prednisone). She didn't lie. That took about an hour to go into the IV. By the way, they left the tube sticking out of the port-a-cath overnight so they didn't have to restick me. How nice. Then my very nice, slightly older nurse started the Cytoxan. She also said she was going to start it slower than normal because it was my first time and because of yesterday's reactions. Praise the Lord, no reactions today at all! I even watched a movie on my grandson's portable DVD player. (No TV in this room). I don't remember for sure what time we left, but I think it was a little after one in the afternoon. She told me to take my anti-nausea pills for the next three days even if I didn't feel nauseated.
We then came home, waited for a bit, then took Cindy, Mom, brother Bill, Cheryl, picked up Jonathan from school and drove up to the Oasis restaurant, high on a hill overlooking beautiful Lake Travis. We had a wonderful lunch and enjoyed the beauty. It was a nice day, sunny and in the low 70's but we didn't eat out on the deck as Mom gets cold easily. The only thing really different that I have noticed today, other than being hyper, is that it is getting harder and harder to just pass by a trash can. Darn inner mouse!
Later in the evening it was time to take another 40 mg of Prednisone -- the steroid that can/does make me hyper. I have to take it with food and then I remembered I was supposed to be checking my blood sugar while on this. I figured one dose of the pills probably didn't affect it yet -- wrong. My sugar was at 239. Should be under 110 fasting. So, I finally found all the dosage directions, with Cheryl's help, and gave myself my very first insulin shot of nine units. I hesitated a little, but it didn't hurt again so next time will be no hesitation. I checked it two hours after eating and it was 221. Not sure what to do as my directions were to shoot up and then eat right away. Guess I will call tomorrow and ask.
Well, it is 2:29 a.m. local time right now and I am still not sleepy. I know I was back to being my very wordy self, but hey, it's my Blog, right?
For those of you who are still hanging with me, I will catch you up on Cindy's heart surgery. Cindy came home the next morning and they did not put the defibrillator in. Yea, I think! She was quite good on Friday, more worn out on Saturday, so-so on Sunday, and I have no idea on Monday, as I was so out of it. I know she was playing nurse to me, which she is VERY good at. She flew to NY and did a fantastic job taking care of my Dad shortly before he died. Today she seemed a little tired and I noticed when she was standing at the window at the restaurant looking at the view she was holding her heart like she did when it was erratic. I asked her if she was still having trouble, and she said yes, but not as much or as strong as before, but it felt like she had a weight on her chest. That didn't sound good to me. Later tonight she started running fever and it she said it felt like a burning sensation around her heart. She called her cardiologist and he had her go to the ER for an x-ray and EKG. My brother Bill drove her over. The EKG and x-rays seemed normal and the ER doctor thought she was beginning some type of other infection she may have picked up in the hospital. Her white blood count was a little low. He was sure the burning and heavy feeling is from scar tissue in her heart and part of the healing process. She will go see her cardiologist tomorrow. She and our grandson are spending the night with us, just to be on the safe side. Her husband is still in New Mexico in the oil fields.
My older brother, Jim, is now in the hospital in upstate NY. He went to the doctor having some difficulty catching his breath and the doctor immediately put him in the hospital. He has fluid in his lungs and around his heart. Not sure what is happening with that. They ran a bunch of tests today, but won't have the results until tomorrow. Cheryl is still holding on to her sanity -- I think! Please continue to keep us in your prayers. Also remember Gene Jones and the family as they go through this grieving time.
Well, after proofreading, rewriting, making it even longer, etc. it is now 3:20 a.m. local Texas time. Guess I will try and force myself to go to sleep. God Bless each of you!
Next I was taken into the infusion room, a large "L" shaped room divided into little pods of four reclining infusion chairs and two comfortable easy chairs for family members who may have come with the patient. I couldn't see around the "L," but I counted 20 chairs in five pods that I could see. Each pod also had a TV with video/DVD player. Because I was starting early, I think I was the first one in the room, but later in the day, just about every chair was filled. How sad.
First a very nice, very young nurse re-explained what they were going to be doing and what I could expect. I think one nurse was in charge of each pod as she was there all day, except for lunch. Then she gave me two Tylenol and then infused me with Benadryl through the IV. She sat and talked with me while the Benadryl made me loopier and loopier. I guess when she could tell my tongue was as thick as shag carpet and I was no longer making sense, and the Bendadryl bag was empty, it was time to start the Rituxan (made from mouse proteins). The Rituxan bag (a very large bag) started dripping very slowly along with a bag of Saline that was dripping faster. Every half-hour the dose was increased. Besides breakfast at home, I also drank a large cup of coffee, a V8 juice, and had bottled water there at my chair. The room was quite chilly and I asked my very young, very nice nurse how I was supposed to tell my shivering from cold to the chills that might be a reaction. She said I would know because the shivering will be quite strong. Within a half hour Cheryl covered me with a blanket as I reclined for the first of many short naps throughout the day from the Benadryl. Within an hour or so I had two blankets on me. About 11:30 or so my ears starting itching, but I didn't think too much of it. I told Cheryl I thought my inner mouse was trying to get out. Of course we both laughed pretty hard. She out of pity, I because of being drugged. About that time I had to take my half-hour trip to the restroom--remember I had been drinking a lot plus all the IV stuff coursing through me. I know it was a half hour because I timed it for right after each increase of the drip. This time I got in the restroom and it seemed very cold in there and I started shivering very hard. (I will spare you any further details of that trip.) I had also noticed my throat getting sore like from post nasal drip. I thought, great, now I am getting a cold. I had no sooner gotten back to my chair than I sneezed and my nose stuffed up to where I couldn't breath. My very nice, and very young nurse noticed this and came over and asked me what was going on. She stopped the mouse parts from flowing into me. Then my chest started to itch. She looked and it was red. She said this was all a reaction from the little mouse parts running through my veins and would go away in a little while because she stopped the infusion. She also chided me for not telling her about my itching ears. Well, none of these symptoms, other than the violent shaking in the restroom were what I had been warned about. Sigh. My very young, very nice nurse put in a call to Dr. Netaji for orders. About 45 minutes later, all symptoms were gone and they started up again a little slower than when it had been stopped. I think they increased it about every 15 minutes then. Cheryl walked down the street to Subway and got us a six-inch sub for lunch. She also brought back a large iced tea for me. My bathroom breaks were now coinciding with the 15-minute increase in IV drip. It wasn't long and the drip was really flowing. I was still chilly but not shaking violently. I think it was a little after three and we were done. All the way through they took my blood pressure and temperature every time they increased the dosage. Both were great, in fact my temp was always 97.something.
Cheryl drove home. I couldn't get warm in the car. She turned the heater up all the way, closed her vents and I had mine pointed right at me. I turned on the heated seats. My bottom got toasty but the rest of me was still cold. When we got home I laid on the couch, kept my jacket on and covered up with two blankets and pulled one of them up over my head. I just started shivering and couldn't stop. About 4:30 or so we took my temp and I had a fever. I took Tylenol as instructed. By 6:00 I was still shaking and my fever was up to 102.8. It stayed right around there and even though I was shivering, I kept managing to fall asleep. Sometime later in the evening, perhaps midnight, the shivering stopped, I felt warm and all the covers came off. I was still running fever, but not as high. About 3 a.m. I started sweating real bad and my fever broke. I went to bed.
At about 7:15 in the morning I got a call that a very dear man from the Sunday School class that I teach, Jimmy Jones, had passed away about an hour earlier. Apparently his heart gave out from complications of a surgery he had the past Thursday. I had visited him over the weekend in the hospital and he was quite weak then and the doctor said they were surprised he made it through the surgery. After the call, I got up out of bed and felt normal! I headed over to the hospital to be with his wife, Gene. Our wonderful pastor was there too. While we were there his family doctor came to pay his respects. What a wonderful Christian man. He said that he had been reading a book by Max Lucado last night and how Max wrote about death being a celebration of homecoming in heaven. I know Jimmy is celebrating! He spoke of it often in the past year as his health deteriorated. The man from the funeral home, whom Gene knew when he was a teenager but of course I can't remember his name, came just about the time I had to leave so I could make it to my second round of chemo on time. The pastor had prayer before I left and Gene, the pastor, the man from the funeral home, and I held hands in prayer at the foot of Jimmy's bed. Very comforting.
I got home, checked my blood sugar -- good as usual -- 87, ate a quick breakfast, and took my first 40 mg of Prednisone. We then headed for the clinic. My appointment was at 10 and I walked in about 10:03, whew! However we sat in the waiting room for a good 10 minutes so I guess I wasn't really that late. Today I was in a different location up in northern Austin. Much smaller, only 8 chairs I think. Again, a very nice, but slightly older nurse explained what they were going to be doing with the Cytoxan infusion (a true chemo-type drug). First they infused me with a bag of anti-nausea drug that would last about 12 hours. She said it saturates a gland in the brain so it doesn't recognize that the stomach is upset and wants to rid itself of poisonous stuff. She also said it would keep me awake tonight (along with the Prednisone). She didn't lie. That took about an hour to go into the IV. By the way, they left the tube sticking out of the port-a-cath overnight so they didn't have to restick me. How nice. Then my very nice, slightly older nurse started the Cytoxan. She also said she was going to start it slower than normal because it was my first time and because of yesterday's reactions. Praise the Lord, no reactions today at all! I even watched a movie on my grandson's portable DVD player. (No TV in this room). I don't remember for sure what time we left, but I think it was a little after one in the afternoon. She told me to take my anti-nausea pills for the next three days even if I didn't feel nauseated.
We then came home, waited for a bit, then took Cindy, Mom, brother Bill, Cheryl, picked up Jonathan from school and drove up to the Oasis restaurant, high on a hill overlooking beautiful Lake Travis. We had a wonderful lunch and enjoyed the beauty. It was a nice day, sunny and in the low 70's but we didn't eat out on the deck as Mom gets cold easily. The only thing really different that I have noticed today, other than being hyper, is that it is getting harder and harder to just pass by a trash can. Darn inner mouse!
Later in the evening it was time to take another 40 mg of Prednisone -- the steroid that can/does make me hyper. I have to take it with food and then I remembered I was supposed to be checking my blood sugar while on this. I figured one dose of the pills probably didn't affect it yet -- wrong. My sugar was at 239. Should be under 110 fasting. So, I finally found all the dosage directions, with Cheryl's help, and gave myself my very first insulin shot of nine units. I hesitated a little, but it didn't hurt again so next time will be no hesitation. I checked it two hours after eating and it was 221. Not sure what to do as my directions were to shoot up and then eat right away. Guess I will call tomorrow and ask.
Well, it is 2:29 a.m. local time right now and I am still not sleepy. I know I was back to being my very wordy self, but hey, it's my Blog, right?
For those of you who are still hanging with me, I will catch you up on Cindy's heart surgery. Cindy came home the next morning and they did not put the defibrillator in. Yea, I think! She was quite good on Friday, more worn out on Saturday, so-so on Sunday, and I have no idea on Monday, as I was so out of it. I know she was playing nurse to me, which she is VERY good at. She flew to NY and did a fantastic job taking care of my Dad shortly before he died. Today she seemed a little tired and I noticed when she was standing at the window at the restaurant looking at the view she was holding her heart like she did when it was erratic. I asked her if she was still having trouble, and she said yes, but not as much or as strong as before, but it felt like she had a weight on her chest. That didn't sound good to me. Later tonight she started running fever and it she said it felt like a burning sensation around her heart. She called her cardiologist and he had her go to the ER for an x-ray and EKG. My brother Bill drove her over. The EKG and x-rays seemed normal and the ER doctor thought she was beginning some type of other infection she may have picked up in the hospital. Her white blood count was a little low. He was sure the burning and heavy feeling is from scar tissue in her heart and part of the healing process. She will go see her cardiologist tomorrow. She and our grandson are spending the night with us, just to be on the safe side. Her husband is still in New Mexico in the oil fields.
My older brother, Jim, is now in the hospital in upstate NY. He went to the doctor having some difficulty catching his breath and the doctor immediately put him in the hospital. He has fluid in his lungs and around his heart. Not sure what is happening with that. They ran a bunch of tests today, but won't have the results until tomorrow. Cheryl is still holding on to her sanity -- I think! Please continue to keep us in your prayers. Also remember Gene Jones and the family as they go through this grieving time.
Well, after proofreading, rewriting, making it even longer, etc. it is now 3:20 a.m. local Texas time. Guess I will try and force myself to go to sleep. God Bless each of you!
Wednesday, January 11, 2006
A Satisfactory Compromise
Well, I had a very interesting and long appointment with my oncologist yesterday. Cheryl and I met with him and the chemo infusion technician for almost two hours.
Bottom line, we will NOT be doing the treatment I wanted and we will NOT be doing the one he first wanted. Instead we came to a compromise that made sense for both of us. When I told him the treatment I wanted, Chlorambucil and Rituxan he reacted very strongly with a no, no, no, no. I was surprised at such a strong reaction. He said that treatment destroys your DNA and opens you up to all kinds of other cancers. I told him I had read and been told that by another patient too but as long as you kept it under 10 mg a day you mostly avoided those complications. He said he has read that also, but in the past he used that treatment a lot for many years and he had ruined too many people's health with it. He also said it would most likely ruin my chances for a transplant down the road. I said, "WHAT????" I thought I was too old for a bone marrow transplant. He said he was talking about an autologous stem cell transplant. I didn't even know he might consider that for me later. That is where they get me into a good remission, harvest my own stem cells, destroy my immune system and then reinfuse me with my own cells. My blood is passed through a machine that removes the stem cells (immature cells from which all blood cells develop), then returns the blood to the body. This procedure is called apheresis and usually takes 3 or 4 hours over one or more days to complete. The stem cells may be treated with drugs to kill any cancer cells and then frozen until they are transplanted back into me. He said if I went with my treatment we may hurt the DNA and ruin that option. (Near the end of the whole discussion he did say if I really did want to go with what I had suggested, he would, even though he was against it.)
I told him I did not want the Fludarabine which is part of what he wanted, because it also destroys the T cells which drops the CD4 count below 200 for two years or more and opens you to all the same opportunistic infections as an AIDS patient. Since my cancer is a B-cell cancer, I did not want to go that route until absolutely necessary. What good is remission if you are always getting sick with everything else? He saw my point. The first combination he came up with he had to reject when he remembered I was diabetic because it would throw my diabetes way, way out of control and I most probably would end up with severe neuropathy - I think it was Vincristine he couldn't add.
So to make a very long story just a little shorter, we came up with a modification, a compromise of both of our positions. One with which we were both satisfied. I will get a combination of Rituxan (the one made from mouse parts), Cytoxan, and heavy doses of Prednisone. This will still throw my diabetes for a loop, but not as much danger of neuropathy. I will probably have to go on insulin during the treatment cycles and will have to test my blood at least four times a day. I still have to get the port-a-cath put into my chest (my very own breast implant). He said I needed this now before my platelets got any lower and then we couldn't do the surgery. Once they get too low I could bleed from the regular IV.
So, next week I will see my primary care doctor on Monday for diabetes blood work, insulin prescription and training in how I am going to manage the diabetes with insulin. Monday afternoon a final dental appointment for awhile. Tuesday afternoon an office appointment with the surgeon. Scheduling nurse said I may have the surgery on Wed or Friday because I told her I couldn't do it on Thursday. Thursday morning Oncology appointment, base line blood work and final preparations. Thursday afternoon my mother (91 years old) and youngest brother Bill arrive from NY. (By the way, Bill is a great actor who just finished his latest show on Broadway - but that is another story.)
Monday Jan 23 - Is the big day, my first Rituxan infusion 8 to 15 hours long. They will first infuse me with Benadryl and give me Tylenol before starting. Must start slow and stop as I get reactions (chills, fever, low blood pressure, are common). They slowly increase the dosage every half hour. If they go too fast it could destroy my kidneys and I would end up on dialysis. This first infusion does a very quick massive cell kill and the body reacts. He said most reactions happen during hour 2 or 3. I have to drink a lot in order to flush the dead cells out as we go. According to them, I will have fever most of the night, but I have heard reports from many other patients that they didn't.
Tuesday Jan 24 - First Cytoxan infusion - will probably make me very nauseous. Also start the Prednisone which I will take twice a day for five days.
When we first started our talks, the doctor asked me if I could afford to take a couple of months off work - I told him no.
After discussing the treatment schedule I asked him about going to San Angelo for my work the week following treatment. He just stared at me. Finally he, very slowly, said, "Well, different people do react differently to chemo." Then, right in front of my wife, he said, "You know, your health is more important than your job." Then my wife shot me "THE LOOK." I swear it was a conspiracy. He said the lowest point normally comes a week to ten days after infusion and then the counts start climbing again out of the danger area. Just in time to start the whole thing over again - depending on blood counts -- every three to four weeks. They will take my blood once a week to check the counts. Bottom line, at least the first trip to San Angelo is probably out for me. I have a lot of trips for work scheduled in the next couple of months and they may all be out. My bosses have been great and they already have back-ups scheduled for me in case I can't go. My team lead is taking the bulk of the back-ups and with her regular schedule plus mine, she will only be home one week for the next three months. Whew!
Things they said will probably happen as a result of the treatment: Severe anemia, very low platelets, very low drop in white cells (which we want to get rid of the excess). They can counter that with transfusions of platelets and packed red cells and something else I forget. Very much at risk for bacterial infections. He told me that when I was tired I was to stay home and if I was at work and got tired I was to go home. I have to watch for any sign of infection and at the first sign of a cold sore or the beginning of shingles, or any fever over 100.5 after that first night, I was to call, day or night and speak to the doctor on call and start anti-viral meds right away.
The tech spent a long time talking about side affects and the importance of eating when I will not feel like eating. Small numerous snacks to help control nausea, medicines that can help, and to eat peanut butter and drink Glucerna (normally Ensure, but not for diabetic) for nutrition, even when I didn't want it. It was funny because he talked about hair loss and how it can be traumatic. I told him no problem. Then he said it was often more traumatic for the spouse as she saw hair on the pillow, in the shower, on the sink, etc. Again, told him no problem as we already went through that. As I was losing it on top we almost had to sweep the bed out in the morning. He thought that was funny. He talked about lots of other side effects, including being up all night when on the strong doses of Prednisone (he said for Cheryl to make a "honey-do" list because I may want to clean all night - ha!) and how it could affect my personality (how could I possibly become more loveable?) After all the different effects, he gave us a VERY thick manual titled "Home Care Guide Cancer -- How to Care for Family and Friends at Home." The book is thicker than any of our training manuals. Now that was sobering. Neither of us has even looked at it yet. He told us the importance of not being around sick people. He was concerned about where I work and asked if I trained patients. He was somewhat relieved that I didn't. I train the folks that deal with patients. He said the grand kids needed to have all their shots up to date, and they were not to come around me for 24 hours after any vaccine. Lots of hand washing for everyone was important. Starting on the 23 rd I have to switch to an electric razor. And a bunch of other stuff -- Cheryl took lots of notes. He also told us when either of us ran out of leave the Family and Medical Leave Act takes over, even for Cheryl if she has to stay home to help me. He painted a much darker picture than he needed to paint, I think. We shall see. Then I had to sign releases that I think gave them permission to kill me. When we got home, Cheryl went over her notes with me (while I could still remember) to make sure she got it all. We spent most of the evening on the phone talking to our kids then my Mom and all my brothers.
I am definitely not scared or even very nervous about it. In fact, I can just hear some of my fellow patients as they read this saying, "So?" Many of them have gone through numberous rounds of many different combinations and they are pros at it by now. However, for me it is starting to seem like a little bigger deal than I first thought, I guess because we are now moving from the theoretical to the reality of it all.
I am sitting in a hotel room in El Paso, TX, right now. Tomorrow I begin training a three day course I put together. I am looking forward to the training as it will keep my mind occupied and I will be doing something "normal."
I appreciate the understanding of everyone at work who will be, and have been, covering my duties for me. Before diagnosis last year, I had several hundred hours of both vacation and sick leave saved up. I have cut that by about a quarter with all my medical appointments this year, but I still have a couple hundred hours combined time saved. I got an email from my training director who told me not to worry about work, take care of what I needed to take care of, use up all my time I have coming and then we will go into the "sick leave pool" for extra days. He said we can also arrange work from home as I am feeling up to it. When I am not on the road training, the courses I develop are done on the computer. Counting my laptop, we have three at home. In fact, I may even get more done at home than at the office. There is a supervisor's quality assurance course I was supposed to have developed this past year and I haven't gotten very far. Didn't seem like I could concentrate on it very well. Now that I know the game plan and we are taking action, that relieves much of the uncertainty. Now if I can just get it done before "chemo brain" sets in. If not, could be an interesting course!
I really do not think I will have too rough of a time with this treatment, but then who knows? No matter whether I do or not, the support I have is fantastic. I have so many people praying for me all over the place that I feel very secure and at peace with it all.
Bottom line, we will NOT be doing the treatment I wanted and we will NOT be doing the one he first wanted. Instead we came to a compromise that made sense for both of us. When I told him the treatment I wanted, Chlorambucil and Rituxan he reacted very strongly with a no, no, no, no. I was surprised at such a strong reaction. He said that treatment destroys your DNA and opens you up to all kinds of other cancers. I told him I had read and been told that by another patient too but as long as you kept it under 10 mg a day you mostly avoided those complications. He said he has read that also, but in the past he used that treatment a lot for many years and he had ruined too many people's health with it. He also said it would most likely ruin my chances for a transplant down the road. I said, "WHAT????" I thought I was too old for a bone marrow transplant. He said he was talking about an autologous stem cell transplant. I didn't even know he might consider that for me later. That is where they get me into a good remission, harvest my own stem cells, destroy my immune system and then reinfuse me with my own cells. My blood is passed through a machine that removes the stem cells (immature cells from which all blood cells develop), then returns the blood to the body. This procedure is called apheresis and usually takes 3 or 4 hours over one or more days to complete. The stem cells may be treated with drugs to kill any cancer cells and then frozen until they are transplanted back into me. He said if I went with my treatment we may hurt the DNA and ruin that option. (Near the end of the whole discussion he did say if I really did want to go with what I had suggested, he would, even though he was against it.)
I told him I did not want the Fludarabine which is part of what he wanted, because it also destroys the T cells which drops the CD4 count below 200 for two years or more and opens you to all the same opportunistic infections as an AIDS patient. Since my cancer is a B-cell cancer, I did not want to go that route until absolutely necessary. What good is remission if you are always getting sick with everything else? He saw my point. The first combination he came up with he had to reject when he remembered I was diabetic because it would throw my diabetes way, way out of control and I most probably would end up with severe neuropathy - I think it was Vincristine he couldn't add.
So to make a very long story just a little shorter, we came up with a modification, a compromise of both of our positions. One with which we were both satisfied. I will get a combination of Rituxan (the one made from mouse parts), Cytoxan, and heavy doses of Prednisone. This will still throw my diabetes for a loop, but not as much danger of neuropathy. I will probably have to go on insulin during the treatment cycles and will have to test my blood at least four times a day. I still have to get the port-a-cath put into my chest (my very own breast implant). He said I needed this now before my platelets got any lower and then we couldn't do the surgery. Once they get too low I could bleed from the regular IV.
So, next week I will see my primary care doctor on Monday for diabetes blood work, insulin prescription and training in how I am going to manage the diabetes with insulin. Monday afternoon a final dental appointment for awhile. Tuesday afternoon an office appointment with the surgeon. Scheduling nurse said I may have the surgery on Wed or Friday because I told her I couldn't do it on Thursday. Thursday morning Oncology appointment, base line blood work and final preparations. Thursday afternoon my mother (91 years old) and youngest brother Bill arrive from NY. (By the way, Bill is a great actor who just finished his latest show on Broadway - but that is another story.)
Monday Jan 23 - Is the big day, my first Rituxan infusion 8 to 15 hours long. They will first infuse me with Benadryl and give me Tylenol before starting. Must start slow and stop as I get reactions (chills, fever, low blood pressure, are common). They slowly increase the dosage every half hour. If they go too fast it could destroy my kidneys and I would end up on dialysis. This first infusion does a very quick massive cell kill and the body reacts. He said most reactions happen during hour 2 or 3. I have to drink a lot in order to flush the dead cells out as we go. According to them, I will have fever most of the night, but I have heard reports from many other patients that they didn't.
Tuesday Jan 24 - First Cytoxan infusion - will probably make me very nauseous. Also start the Prednisone which I will take twice a day for five days.
When we first started our talks, the doctor asked me if I could afford to take a couple of months off work - I told him no.
After discussing the treatment schedule I asked him about going to San Angelo for my work the week following treatment. He just stared at me. Finally he, very slowly, said, "Well, different people do react differently to chemo." Then, right in front of my wife, he said, "You know, your health is more important than your job." Then my wife shot me "THE LOOK." I swear it was a conspiracy. He said the lowest point normally comes a week to ten days after infusion and then the counts start climbing again out of the danger area. Just in time to start the whole thing over again - depending on blood counts -- every three to four weeks. They will take my blood once a week to check the counts. Bottom line, at least the first trip to San Angelo is probably out for me. I have a lot of trips for work scheduled in the next couple of months and they may all be out. My bosses have been great and they already have back-ups scheduled for me in case I can't go. My team lead is taking the bulk of the back-ups and with her regular schedule plus mine, she will only be home one week for the next three months. Whew!
Things they said will probably happen as a result of the treatment: Severe anemia, very low platelets, very low drop in white cells (which we want to get rid of the excess). They can counter that with transfusions of platelets and packed red cells and something else I forget. Very much at risk for bacterial infections. He told me that when I was tired I was to stay home and if I was at work and got tired I was to go home. I have to watch for any sign of infection and at the first sign of a cold sore or the beginning of shingles, or any fever over 100.5 after that first night, I was to call, day or night and speak to the doctor on call and start anti-viral meds right away.
The tech spent a long time talking about side affects and the importance of eating when I will not feel like eating. Small numerous snacks to help control nausea, medicines that can help, and to eat peanut butter and drink Glucerna (normally Ensure, but not for diabetic) for nutrition, even when I didn't want it. It was funny because he talked about hair loss and how it can be traumatic. I told him no problem. Then he said it was often more traumatic for the spouse as she saw hair on the pillow, in the shower, on the sink, etc. Again, told him no problem as we already went through that. As I was losing it on top we almost had to sweep the bed out in the morning. He thought that was funny. He talked about lots of other side effects, including being up all night when on the strong doses of Prednisone (he said for Cheryl to make a "honey-do" list because I may want to clean all night - ha!) and how it could affect my personality (how could I possibly become more loveable?) After all the different effects, he gave us a VERY thick manual titled "Home Care Guide Cancer -- How to Care for Family and Friends at Home." The book is thicker than any of our training manuals. Now that was sobering. Neither of us has even looked at it yet. He told us the importance of not being around sick people. He was concerned about where I work and asked if I trained patients. He was somewhat relieved that I didn't. I train the folks that deal with patients. He said the grand kids needed to have all their shots up to date, and they were not to come around me for 24 hours after any vaccine. Lots of hand washing for everyone was important. Starting on the 23 rd I have to switch to an electric razor. And a bunch of other stuff -- Cheryl took lots of notes. He also told us when either of us ran out of leave the Family and Medical Leave Act takes over, even for Cheryl if she has to stay home to help me. He painted a much darker picture than he needed to paint, I think. We shall see. Then I had to sign releases that I think gave them permission to kill me. When we got home, Cheryl went over her notes with me (while I could still remember) to make sure she got it all. We spent most of the evening on the phone talking to our kids then my Mom and all my brothers.
I am definitely not scared or even very nervous about it. In fact, I can just hear some of my fellow patients as they read this saying, "So?" Many of them have gone through numberous rounds of many different combinations and they are pros at it by now. However, for me it is starting to seem like a little bigger deal than I first thought, I guess because we are now moving from the theoretical to the reality of it all.
I am sitting in a hotel room in El Paso, TX, right now. Tomorrow I begin training a three day course I put together. I am looking forward to the training as it will keep my mind occupied and I will be doing something "normal."
I appreciate the understanding of everyone at work who will be, and have been, covering my duties for me. Before diagnosis last year, I had several hundred hours of both vacation and sick leave saved up. I have cut that by about a quarter with all my medical appointments this year, but I still have a couple hundred hours combined time saved. I got an email from my training director who told me not to worry about work, take care of what I needed to take care of, use up all my time I have coming and then we will go into the "sick leave pool" for extra days. He said we can also arrange work from home as I am feeling up to it. When I am not on the road training, the courses I develop are done on the computer. Counting my laptop, we have three at home. In fact, I may even get more done at home than at the office. There is a supervisor's quality assurance course I was supposed to have developed this past year and I haven't gotten very far. Didn't seem like I could concentrate on it very well. Now that I know the game plan and we are taking action, that relieves much of the uncertainty. Now if I can just get it done before "chemo brain" sets in. If not, could be an interesting course!
I really do not think I will have too rough of a time with this treatment, but then who knows? No matter whether I do or not, the support I have is fantastic. I have so many people praying for me all over the place that I feel very secure and at peace with it all.
Monday, December 19, 2005
Hmm, That's Interesting
Tonight I was going through my medical records looking for all the tests done on my back last January and February so I can take them to the neurologist tomorrow. (Wow, since the auto accident in August 2004, that file has gotten very large!) In that file cabinet were my retired military medical records. Before moving here to the Austin area, I had all my medical care at Goodfellow AFB, San Angelo, TX.
If you remember, my local doctor had not done a complete blood count (CBC) since I moved here in January, 1996. Well, in those military records were a CBC from 1992 and another from 1995. In 1992, the white blood cells and the lymphocytes were well within the normal limits. In 1995, both the white blood cells and the lymphocyte cells were right on the very edge of high normal. Perhaps this was the beginning of the activation of the leukemia and I have had it for about ten years. I guess that would explain why it may be time for treatment, even with the "good prognostic indicators." If I have had it for ten years without treatment, that is a good long time. I will mention this to my hematologist/oncologist in January.
Well, I THINK I have decided against going with the Rituxan treatment. I have done a lot of research this weekend and have read many of the postings on ACOR from Dr. Terry Hamblin, for whom I have great respect. However, I still don't want to start with FCR first. Instead I am going to suggest going with Chlorambucil, also known as Leukeran®, as a first line treatment. Chlorambucil is an alkylating agent of the nitrogen mustard type.
The warning states: Chlorambucil can cause a decrease in the number of blood cells in your bone marrow. (Well, I would hope it does, I want to kill all those little cancer cells.) Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this drug. (Good! Otherwise it would be a waste, wouldn't it?) Chlorambucil has been associated with the development of other types of cancers. (Umm, let's not even think about that! This is supposed to kill my cancer, not give birth to more.) Talk with your doctor about the potential risk of developing a new cancer. (OK, I will.) Chlorambucil may interfere with the normal menstrual cycle (period) in women and may stop sperm production in men. (I'm 60! Who cares? I don't.) However, you should not assume that you cannot get pregnant, or that you cannot get someone else pregnant. (I don't think so! Cheryl would have something to say about that!) Women who are pregnant or breast-feeding should tell their doctors before they begin taking this drug. You should not plan to have children while receiving chemotherapy or for a while after treatments. (Believe me, I have no plans!) (Talk to your doctor for further details.) Use a reliable method of birth control to prevent pregnancy. (Again, no problem!) Chlorambucil may harm the fetus.
Side effects from Chlorambucil are common and include:
darkened and dry skin
loss of appetite or weight
diarrhea
weakness
Serious side effects have been reported with the use of Chlorambucil including: allergic reactions (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives); decreased bone marrow function and blood problems (extreme fatigue; easy bruising or bleeding; black, bloody or tarry stools; fever or chills; or signs of infection such as fever; chills, or sore throat); seizures; skin rash; yellowing of the skin or eyes; persistent cough; nausea or vomiting; missed menstrual periods, or unusual lumps or masses.
Actually, these warnings are much less severe than the warnings on other treatments! And, if I am not mistaken, this is taken in pill form -- a real bonus. Well, for now, that is my decision for my treatment 'soup de jure.'
Tomorrow I am off to the Neurologist, but I can't remember why! Oh, yes, it is because of my worsening loss of memory and the pain and numbness in my legs. None of my doctors think the leg pain is due to the leukemia or lymphoma, but rather due to the back injury from my auto accident. I don't remember what they said about my memory. We shall see tomorrow. Another medical specialist notch for my belt.
By the way, thank you to all who left comments on my last post or emailed me that they were reading this blog. I truly appreciate each and every one of you! Thank you for your prayers. God Bless!
If you remember, my local doctor had not done a complete blood count (CBC) since I moved here in January, 1996. Well, in those military records were a CBC from 1992 and another from 1995. In 1992, the white blood cells and the lymphocytes were well within the normal limits. In 1995, both the white blood cells and the lymphocyte cells were right on the very edge of high normal. Perhaps this was the beginning of the activation of the leukemia and I have had it for about ten years. I guess that would explain why it may be time for treatment, even with the "good prognostic indicators." If I have had it for ten years without treatment, that is a good long time. I will mention this to my hematologist/oncologist in January.
Well, I THINK I have decided against going with the Rituxan treatment. I have done a lot of research this weekend and have read many of the postings on ACOR from Dr. Terry Hamblin, for whom I have great respect. However, I still don't want to start with FCR first. Instead I am going to suggest going with Chlorambucil, also known as Leukeran®, as a first line treatment. Chlorambucil is an alkylating agent of the nitrogen mustard type.
The warning states: Chlorambucil can cause a decrease in the number of blood cells in your bone marrow. (Well, I would hope it does, I want to kill all those little cancer cells.) Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this drug. (Good! Otherwise it would be a waste, wouldn't it?) Chlorambucil has been associated with the development of other types of cancers. (Umm, let's not even think about that! This is supposed to kill my cancer, not give birth to more.) Talk with your doctor about the potential risk of developing a new cancer. (OK, I will.) Chlorambucil may interfere with the normal menstrual cycle (period) in women and may stop sperm production in men. (I'm 60! Who cares? I don't.) However, you should not assume that you cannot get pregnant, or that you cannot get someone else pregnant. (I don't think so! Cheryl would have something to say about that!) Women who are pregnant or breast-feeding should tell their doctors before they begin taking this drug. You should not plan to have children while receiving chemotherapy or for a while after treatments. (Believe me, I have no plans!) (Talk to your doctor for further details.) Use a reliable method of birth control to prevent pregnancy. (Again, no problem!) Chlorambucil may harm the fetus.
Side effects from Chlorambucil are common and include:
darkened and dry skin
loss of appetite or weight
diarrhea
weakness
Serious side effects have been reported with the use of Chlorambucil including: allergic reactions (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives); decreased bone marrow function and blood problems (extreme fatigue; easy bruising or bleeding; black, bloody or tarry stools; fever or chills; or signs of infection such as fever; chills, or sore throat); seizures; skin rash; yellowing of the skin or eyes; persistent cough; nausea or vomiting; missed menstrual periods, or unusual lumps or masses.
Actually, these warnings are much less severe than the warnings on other treatments! And, if I am not mistaken, this is taken in pill form -- a real bonus. Well, for now, that is my decision for my treatment 'soup de jure.'
Tomorrow I am off to the Neurologist, but I can't remember why! Oh, yes, it is because of my worsening loss of memory and the pain and numbness in my legs. None of my doctors think the leg pain is due to the leukemia or lymphoma, but rather due to the back injury from my auto accident. I don't remember what they said about my memory. We shall see tomorrow. Another medical specialist notch for my belt.
By the way, thank you to all who left comments on my last post or emailed me that they were reading this blog. I truly appreciate each and every one of you! Thank you for your prayers. God Bless!
Wednesday, December 14, 2005
Not The Christmas Present I Was Looking For
I saw my hematologist/oncologist today. I got the news I didn’t want to hear but what I was expecting after reviewing my blood work from last week. I will begin chemo treatments sometime after the first of the year. I have to get a referral from my primary care doctor and approval from my insurance company to see a surgeon to have a portacath put in. This is put into my chest underneath my skin so they can use that for the chemo without having to use the veins all the time. This device can stay in there for a year or more and in the months I am not doing chemo, it just has to be flushed out once a month with saline solution.
Dr. Netaji based his recommendation not only on the blood work that showed a doubling of the lymphocytes in six months, but also on my fatigue, night sweats (but doc! I only had one bad soaking one, one night!), and the fact that the CT scan I had last week showed major growth in all the lymph nodes in my neck, stomach and groin. Concerning my neck, which bothers me the most, the CT scan report says, “There is prominent general adenopathy in every major nodual chain of the neck.” The conclusion of the two page report says, “This patient has mild splenomegaly and widespread pathological lymphadenopathy…” Basically, spleen not too badly involved, but naughty swollen lymph nodes everywhere. Using a term I have heard, I guess this makes me a lymphomaniac.
I will get more blood work on January 4th, to make sure last week's hadn’t worsened for other reasons and then I will see Dr. Nataji on January 9th to set up my chemo schedule. I did ask him about using only Rituxan as I posted yesterday. He said we could do that if I really wanted, but he prefers to “hit it with the big guns” right from the beginning. He said he has one patient in a four year remission right now. As we talked I told him that I had read a lot. Basically he said I could read anything but you can’t believe everything you read. He said he was going to email me some articles on treatment. He agreed that if I really wanted, I could try the single agent Rituxan for a month. Obviously what he left unsaid was that when that didn’t work, we would go with his recommendation.
When I got home from work tonight, his email was waiting. There were two articles from the recent Hematology magazine. I had just read the one article on line this weekend! What that author said at the end of that article was one of the reasons I want to try the less toxic Rituxan by itself. Funny, same article and he is using it to convince me to go with the big guns and I am using it to convince him to go with something less toxic first. Obviously I have given it a lot of thought lately and especially this afternoon. Why not try it “for a month?” Rituxan is one ingredient of the triple combination he wants to do anyway. If it doesn’t work, fine, at least I gave it a shot, right?
I also told him I was a little concerned with my memory. He said that once you are over 50 you need to carry a little notebook around as he does. I said, "But doctor, I forgot that Cheryl had major surgery this year! I can't recall any of it and she made me work real hard and I finally remembered the attacks that led up to the surgery, but never could remember the surgery." He just stopped his notebook speech, thought for a minute, and then said, "I think you should see a Neurologist." (Probably was thinking psychiatrist, too.) I told him I already had an appointment for the 22nd of this month because of the pain in my legs (which, by the way, he didn't think is being caused by the swollen lymph nodes).
Well, that is about it for now. I started this blog to primarily keep my extended family and friends up-to-date and I really don’t know who is reading it. I have set it up so that anonymous comments can be added without having to actually sign in and join Blogger. I have had a couple of people at church, several from my ACOR list, and one person from work tell me they are reading it. But that is it. Do me a favor? Click on the "comments" at the end of today’s post; if you are not a member of Blogger, under “choose an identity” just click the “other” button then put in your name; or choose the “anonymous” button; type inside the text block, maybe type in your first name at the end of your comments so I can guess who left the comment; then hit “publish your comment.” That is all there is to it. If you really don’t want it here for the world to see, send me an email either to my work or at home to let me know you are reading this. (For home email first type jtw890 then type @aol.com – I broke that up so automatic scanners didn’t get my email and then send lots of junk) Thanks.
Trials keep You Strong,
Sorrows keep You Human,
Failures keeps You Humble,
Success keeps You Glowing,
But Only God keeps You Going!
Dr. Netaji based his recommendation not only on the blood work that showed a doubling of the lymphocytes in six months, but also on my fatigue, night sweats (but doc! I only had one bad soaking one, one night!), and the fact that the CT scan I had last week showed major growth in all the lymph nodes in my neck, stomach and groin. Concerning my neck, which bothers me the most, the CT scan report says, “There is prominent general adenopathy in every major nodual chain of the neck.” The conclusion of the two page report says, “This patient has mild splenomegaly and widespread pathological lymphadenopathy…” Basically, spleen not too badly involved, but naughty swollen lymph nodes everywhere. Using a term I have heard, I guess this makes me a lymphomaniac.
I will get more blood work on January 4th, to make sure last week's hadn’t worsened for other reasons and then I will see Dr. Nataji on January 9th to set up my chemo schedule. I did ask him about using only Rituxan as I posted yesterday. He said we could do that if I really wanted, but he prefers to “hit it with the big guns” right from the beginning. He said he has one patient in a four year remission right now. As we talked I told him that I had read a lot. Basically he said I could read anything but you can’t believe everything you read. He said he was going to email me some articles on treatment. He agreed that if I really wanted, I could try the single agent Rituxan for a month. Obviously what he left unsaid was that when that didn’t work, we would go with his recommendation.
When I got home from work tonight, his email was waiting. There were two articles from the recent Hematology magazine. I had just read the one article on line this weekend! What that author said at the end of that article was one of the reasons I want to try the less toxic Rituxan by itself. Funny, same article and he is using it to convince me to go with the big guns and I am using it to convince him to go with something less toxic first. Obviously I have given it a lot of thought lately and especially this afternoon. Why not try it “for a month?” Rituxan is one ingredient of the triple combination he wants to do anyway. If it doesn’t work, fine, at least I gave it a shot, right?
I also told him I was a little concerned with my memory. He said that once you are over 50 you need to carry a little notebook around as he does. I said, "But doctor, I forgot that Cheryl had major surgery this year! I can't recall any of it and she made me work real hard and I finally remembered the attacks that led up to the surgery, but never could remember the surgery." He just stopped his notebook speech, thought for a minute, and then said, "I think you should see a Neurologist." (Probably was thinking psychiatrist, too.) I told him I already had an appointment for the 22nd of this month because of the pain in my legs (which, by the way, he didn't think is being caused by the swollen lymph nodes).
Well, that is about it for now. I started this blog to primarily keep my extended family and friends up-to-date and I really don’t know who is reading it. I have set it up so that anonymous comments can be added without having to actually sign in and join Blogger. I have had a couple of people at church, several from my ACOR list, and one person from work tell me they are reading it. But that is it. Do me a favor? Click on the "comments" at the end of today’s post; if you are not a member of Blogger, under “choose an identity” just click the “other” button then put in your name; or choose the “anonymous” button; type inside the text block, maybe type in your first name at the end of your comments so I can guess who left the comment; then hit “publish your comment.” That is all there is to it. If you really don’t want it here for the world to see, send me an email either to my work or at home to let me know you are reading this. (For home email first type jtw890 then type @aol.com – I broke that up so automatic scanners didn’t get my email and then send lots of junk) Thanks.
Trials keep You Strong,
Sorrows keep You Human,
Failures keeps You Humble,
Success keeps You Glowing,
But Only God keeps You Going!
Tuesday, December 13, 2005
Possible Treatment Option
Well, tomorrow I see the hematologist/oncologist. Of course I don't know, but I think I am getting closer and closer to treatment time. I hope not, but I have to be prepared. The more I read about FCR, the less I like it as a first time option. David Arenson's post (see link to the left) from December 07 titled "The Three-Day Rule," came at just the right time for me as I was exploring options.
If necessary tomorrow, I will be discussing with the doctor a much less toxic, one-agent treatment, Rituxan, a monoclonal antibody. If I could get the lymph node swelling down, I think I would feel better, at least maybe not constantly thinking about it. Because it causes my neck to feel like the beginning of a stiff neck, every time I turn my head, it reminds me I have Leukemia/Lymphoma all the time.
IF successful, it can reduce the nodes but doesn't cure the lymphoma (there is no cure). Some of the patients on my on-line support group have had success with the treatment. It works in 52% of cases and can last for almost a year. It can have some serious side-effects, including death (now that would be serious), but that is rarer than with the other treatments. When you go to the manufacturer’s website, the warnings are right there up front.
From that site, other sites I went to, and the personal testimony of those on the ACOR list, I have learned that the majority of patients experience infusion-related symptoms with their first Rituxan infusion. These symptoms include but are not limited to, flu-like fever, chills/rigors, nausea, uticaria, headache, bronchospasm, angioedema and hypotension. These symptoms vary in severity and generally are reversible with medical intervention. The first infusion is usually done very slowly over about a 10-12 hour period to try and avoid these as much as possible. Most times they give you an infusion of Benedryl first and sometimes Tylenol before the Rituxan. Sometimes long-lasting rashes develop, and renal failure can occur, but again, not as common.
On one of the websites, the following side effects are listed and quoted below:
More common: Black, tarry stools; bleeding gums; bloating or swelling of face, arms, hands, lower legs or feet; blood in urine or stools; blurred vision; cough or hoarseness; dizziness; dry mouth; fatigue; feeling of swelling of tongue or throat; fever and chills; flushed, dry skin; flushing of face; fruit-like breath odor; headache; increased hunger; increased thirst; increased urination; itching; lower back or side pain; nausea; nervousness; pain or tenderness around eyes and cheekbones; painful or difficult urination; pale skin; pinpoint red spots on skin; pounding in the ears; rapid weight gain; runny nose; shortness of breath; skin rash; slow or fast heartbeat; sore throat; sores, ulcers or white spots in mouth or on lips; stuffy or runny nose; sweating; swollen glands; tightness of chest; tingling of hands or feet; troubled breathing; troubled breathing with exertion; unexplained weight gain or loss; unusual bleeding or bruising; unusual tiredness or weakness; vomiting; wheezing
Less common: blistering, peeling, loosening of the skin; blisters in the mouth; blisters on the trunk, scalp or other areas; burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feeling; burning, tingling, numbness or pain in the hands, arms, feet, or legs,; confusion; decreased frequency and amount of urination; diarrhea; difficulty in moving; discouragement; feeling sad or empty; increased thirst; irregular heartbeat; irritability; joint or muscle pain; loss of appetite; loss of interest or pleasure; muscle pain or stiffness; muscle cramps; nervousness; numbness or tingling in hands, feet, or lips; pain at place of injection; pain, swelling, or redness in joints; red, itchy lining of eye; red skin lesions, often with a purple center; stabbing pain; trouble concentrating; trouble sleeping; swelling of face or fingers; swelling of feet or lower legs
Rare: Chest pain; renal failure; death
This medicine may also cause the following side effects that your doctor will watch for:
Less common High blood pressure; low white blood cell count
Other side effects may occur that usually do not need medical attention. After Rituxan is administered, large numbers of tumor cells are immediately destroyed (lysed) and eliminated from the body. In 4-5 out of every 10,000 patients the products from the dead cells cannot be eliminated quickly enough and a syndrome called tumor lysis syndrome occurs. This is characterized by a rapid decline in kidney function and a sudden accumulation or decrease in minerals such as potassium, calcium and phosphate to dangerous levels. Tumor lysis syndrome occurs when the size of the tumor or the number of tumor cells circulating in the blood is large, usually within 12-24 hours after the first dose of Rituximab.
Hmm, now that I read all that, doesn't sound so pleasant after all! However, usually what my fellow patients have reported is only the fever and chills. A few have reported they had no side effects at all. A couple reported more serious effects.
Rituxan uses Rituximab, a monoclonal antibody. It is used to treat several types of non-Hodgkin’s lymphoma. It is made from mouse proteins or, one site stated, Chinese Hamster Ovary (I may develop a strong desires for cheese, having litters of babies, or running in circles inside and around wire wheels). It is funny that the manufacturers web site said to tell your doctor if you are allergic to mice or rats. Hmmm, how does someone know that? I have a strong aversion to them, does that count?
Anyway, Rituxan attacks and kills both the cancerous and normal B cells, but the normal cells quickly rebound. I think it may be worth a try. Hopefully it would have an effect on the fatigue, also. It is quite expensive and I believe it is still considered experimental for CLL. I haven't checked to make sure my insurance covers that, but I assume it will because so many have used it for CLL.
Susan LeClair, one of the professors who answers our questions on the ACOR list, once stated, “Traditional chemo can not be used as aggressively as these monoclonal antibodies can because the damage that is done to the bone marrow is too great. Traditional chemo has to be stopped when the counts for plts, rbc and grans get too low. The monoclonals do not have this problem so they are the perfect choice to use against malignant cells in a person whose marrow needs some protection or relief.
Dr. Terry Hamblin, a world-renown CLL expert, has posted the following to our list. I am putting it here to help those who are not members of that list understand our options.
“Remarkable advances have been made in the understanding of CLL in the past 6 years. What has not been found, however, is a single underlying lesion to account for the disease. Other chronic hematological malignancies like polycythemia vera and chronic myelocytic leukemia do have a single genetic lesion.
Therefore, at the moment we don't have a single target to aim at, and our treatment has to be relatively non-specific.
Chlorambucil bashes all bone marrow cells and all immune cells. Fludarabine bashes T cell especially. Campath kills all lymphocytes as well as monocytes and dendritic cells. Rituximab kills all B cells. Newer antibodies like anti-CD23 do not seem so effective.
Even if we had a guided missile that targeted CLL cells specifically, tumors like CLL are devious in their way of avoiding attack and resistant forms might arise.
I suspect we will have a cure in out lifetime, but it will be a war of attrition.
Terry Hamblin”
Well, I shall close for tonight and see what the doctor has to say tomorrow. Pray for good news.
If necessary tomorrow, I will be discussing with the doctor a much less toxic, one-agent treatment, Rituxan, a monoclonal antibody. If I could get the lymph node swelling down, I think I would feel better, at least maybe not constantly thinking about it. Because it causes my neck to feel like the beginning of a stiff neck, every time I turn my head, it reminds me I have Leukemia/Lymphoma all the time.
IF successful, it can reduce the nodes but doesn't cure the lymphoma (there is no cure). Some of the patients on my on-line support group have had success with the treatment. It works in 52% of cases and can last for almost a year. It can have some serious side-effects, including death (now that would be serious), but that is rarer than with the other treatments. When you go to the manufacturer’s website, the warnings are right there up front.
From that site, other sites I went to, and the personal testimony of those on the ACOR list, I have learned that the majority of patients experience infusion-related symptoms with their first Rituxan infusion. These symptoms include but are not limited to, flu-like fever, chills/rigors, nausea, uticaria, headache, bronchospasm, angioedema and hypotension. These symptoms vary in severity and generally are reversible with medical intervention. The first infusion is usually done very slowly over about a 10-12 hour period to try and avoid these as much as possible. Most times they give you an infusion of Benedryl first and sometimes Tylenol before the Rituxan. Sometimes long-lasting rashes develop, and renal failure can occur, but again, not as common.
On one of the websites, the following side effects are listed and quoted below:
More common: Black, tarry stools; bleeding gums; bloating or swelling of face, arms, hands, lower legs or feet; blood in urine or stools; blurred vision; cough or hoarseness; dizziness; dry mouth; fatigue; feeling of swelling of tongue or throat; fever and chills; flushed, dry skin; flushing of face; fruit-like breath odor; headache; increased hunger; increased thirst; increased urination; itching; lower back or side pain; nausea; nervousness; pain or tenderness around eyes and cheekbones; painful or difficult urination; pale skin; pinpoint red spots on skin; pounding in the ears; rapid weight gain; runny nose; shortness of breath; skin rash; slow or fast heartbeat; sore throat; sores, ulcers or white spots in mouth or on lips; stuffy or runny nose; sweating; swollen glands; tightness of chest; tingling of hands or feet; troubled breathing; troubled breathing with exertion; unexplained weight gain or loss; unusual bleeding or bruising; unusual tiredness or weakness; vomiting; wheezing
Less common: blistering, peeling, loosening of the skin; blisters in the mouth; blisters on the trunk, scalp or other areas; burning, crawling, itching, numbness, prickling, “pins and needles”, or tingling feeling; burning, tingling, numbness or pain in the hands, arms, feet, or legs,; confusion; decreased frequency and amount of urination; diarrhea; difficulty in moving; discouragement; feeling sad or empty; increased thirst; irregular heartbeat; irritability; joint or muscle pain; loss of appetite; loss of interest or pleasure; muscle pain or stiffness; muscle cramps; nervousness; numbness or tingling in hands, feet, or lips; pain at place of injection; pain, swelling, or redness in joints; red, itchy lining of eye; red skin lesions, often with a purple center; stabbing pain; trouble concentrating; trouble sleeping; swelling of face or fingers; swelling of feet or lower legs
Rare: Chest pain; renal failure; death
This medicine may also cause the following side effects that your doctor will watch for:
Less common High blood pressure; low white blood cell count
Other side effects may occur that usually do not need medical attention. After Rituxan is administered, large numbers of tumor cells are immediately destroyed (lysed) and eliminated from the body. In 4-5 out of every 10,000 patients the products from the dead cells cannot be eliminated quickly enough and a syndrome called tumor lysis syndrome occurs. This is characterized by a rapid decline in kidney function and a sudden accumulation or decrease in minerals such as potassium, calcium and phosphate to dangerous levels. Tumor lysis syndrome occurs when the size of the tumor or the number of tumor cells circulating in the blood is large, usually within 12-24 hours after the first dose of Rituximab.
Hmm, now that I read all that, doesn't sound so pleasant after all! However, usually what my fellow patients have reported is only the fever and chills. A few have reported they had no side effects at all. A couple reported more serious effects.
Rituxan uses Rituximab, a monoclonal antibody. It is used to treat several types of non-Hodgkin’s lymphoma. It is made from mouse proteins or, one site stated, Chinese Hamster Ovary (I may develop a strong desires for cheese, having litters of babies, or running in circles inside and around wire wheels). It is funny that the manufacturers web site said to tell your doctor if you are allergic to mice or rats. Hmmm, how does someone know that? I have a strong aversion to them, does that count?
Anyway, Rituxan attacks and kills both the cancerous and normal B cells, but the normal cells quickly rebound. I think it may be worth a try. Hopefully it would have an effect on the fatigue, also. It is quite expensive and I believe it is still considered experimental for CLL. I haven't checked to make sure my insurance covers that, but I assume it will because so many have used it for CLL.
Susan LeClair, one of the professors who answers our questions on the ACOR list, once stated, “Traditional chemo can not be used as aggressively as these monoclonal antibodies can because the damage that is done to the bone marrow is too great. Traditional chemo has to be stopped when the counts for plts, rbc and grans get too low. The monoclonals do not have this problem so they are the perfect choice to use against malignant cells in a person whose marrow needs some protection or relief.
Dr. Terry Hamblin, a world-renown CLL expert, has posted the following to our list. I am putting it here to help those who are not members of that list understand our options.
“Remarkable advances have been made in the understanding of CLL in the past 6 years. What has not been found, however, is a single underlying lesion to account for the disease. Other chronic hematological malignancies like polycythemia vera and chronic myelocytic leukemia do have a single genetic lesion.
Therefore, at the moment we don't have a single target to aim at, and our treatment has to be relatively non-specific.
Chlorambucil bashes all bone marrow cells and all immune cells. Fludarabine bashes T cell especially. Campath kills all lymphocytes as well as monocytes and dendritic cells. Rituximab kills all B cells. Newer antibodies like anti-CD23 do not seem so effective.
Even if we had a guided missile that targeted CLL cells specifically, tumors like CLL are devious in their way of avoiding attack and resistant forms might arise.
I suspect we will have a cure in out lifetime, but it will be a war of attrition.
Terry Hamblin”
Well, I shall close for tonight and see what the doctor has to say tomorrow. Pray for good news.
Subscribe to:
Posts (Atom)