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.
Showing posts with label FCR. Show all posts
Showing posts with label FCR. Show all posts
Monday, July 28, 2008
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.
Monday, August 28, 2006
Back to Watch & Wait!!!!!!!
Today was the day I saw my oncologist/hematologist. I had tried to get a copy of my bone marrow biopsy before the appointment and it wasn't available. So, I was quit anxious going in. He asked me if I was still working or if I was going back to work. Remember, he had wanted me to take off six months for chemo treatment. I told him he knew I was working and I was the one with chemo brain, what was his excuse? He said it was from working all day long with people who had chemo brain. Seems it must be catching. A funny start.
Then he sat down and said the bone marrow biopsy showed the marrow was still 50% involved with those little nasties. My heart sank as I knew if it was not below 30% it meant more chemo. However he really surprised me and said he didn't want to do more chemo now and after eight rounds, my body needed a rest. He asked me if I was OK with that. Well, as the kids say, "no, duh!" Of course I was OK with that. He said we will wait and test the blood in three months and take it from there. He did ask if I would follow his advice next time. He said that yes, the FCR was much harder, but he would expect much better results from it. Since my marrow didn't clear like I wanted and I still have the lymph nodes everywhere but my neck, I guess I will probably go along this time. He said we might get six months out of the treatment we just finished. So when I go back in November does not mean that is when we will do more chemo. It will all depend on the blood tests. I asked him about the Campath mop-up right now, suggested by the doctor at MD Anderson. He said he really didn't want to do that and I needed recovery time. Fine by me. He did say that if I was in my 70's, we would just keep repeating the chemo I just finished with. Knock it down for six months and then repeat. However, because I am still relatively young, we need to go stronger and get a longer response. Perhaps several years before having to repeat. Of course I have written about the downside of doing that, as has Dr. Hamblin on his blog. Even Dr. Hamblin is not totally opposed to FCR and he knows it does have its place.
So, I get a break for awhile. This will be the longest period between blood tests since my diagnosis. I am sure I will get anxious as the date approaches. I will get the next blood drawn on November 22 and see him again on November 27th. In the meantime, my inner chinese hamster is getting a break. However, I am putting her on a weight training program so when we do chemo again she is ready to really kick cancer's butt!!!!
My platelets made a big jump to 138! I am still somewhat anemic and, ironically, my iron levels are a little high. Everything else that was out of whack was only slightly above or below normal. What I really want now is to get my energy back. I am tired of feeling tired all the time.
Here is what it says in summary on the bone marrow biopsy report (it is five pages long):
Residual CLL/SLL involving 50% of marrow cellularity, nodular and interstitial pattern.
Normocellular (30-35%) trilineage bone marrow with mild mmegakaryocyte
Mildly increased iron stores
If anyone wants any of the technical details, just email me. I also posted many of the details on the CLL Forum.
So, to all you prayer warriors out there. Thank you so very much. This treatment intermission is truly and answer to prayer.
Then he sat down and said the bone marrow biopsy showed the marrow was still 50% involved with those little nasties. My heart sank as I knew if it was not below 30% it meant more chemo. However he really surprised me and said he didn't want to do more chemo now and after eight rounds, my body needed a rest. He asked me if I was OK with that. Well, as the kids say, "no, duh!" Of course I was OK with that. He said we will wait and test the blood in three months and take it from there. He did ask if I would follow his advice next time. He said that yes, the FCR was much harder, but he would expect much better results from it. Since my marrow didn't clear like I wanted and I still have the lymph nodes everywhere but my neck, I guess I will probably go along this time. He said we might get six months out of the treatment we just finished. So when I go back in November does not mean that is when we will do more chemo. It will all depend on the blood tests. I asked him about the Campath mop-up right now, suggested by the doctor at MD Anderson. He said he really didn't want to do that and I needed recovery time. Fine by me. He did say that if I was in my 70's, we would just keep repeating the chemo I just finished with. Knock it down for six months and then repeat. However, because I am still relatively young, we need to go stronger and get a longer response. Perhaps several years before having to repeat. Of course I have written about the downside of doing that, as has Dr. Hamblin on his blog. Even Dr. Hamblin is not totally opposed to FCR and he knows it does have its place.
So, I get a break for awhile. This will be the longest period between blood tests since my diagnosis. I am sure I will get anxious as the date approaches. I will get the next blood drawn on November 22 and see him again on November 27th. In the meantime, my inner chinese hamster is getting a break. However, I am putting her on a weight training program so when we do chemo again she is ready to really kick cancer's butt!!!!
My platelets made a big jump to 138! I am still somewhat anemic and, ironically, my iron levels are a little high. Everything else that was out of whack was only slightly above or below normal. What I really want now is to get my energy back. I am tired of feeling tired all the time.
Here is what it says in summary on the bone marrow biopsy report (it is five pages long):
Residual CLL/SLL involving 50% of marrow cellularity, nodular and interstitial pattern.
Normocellular (30-35%) trilineage bone marrow with mild mmegakaryocyte
Mildly increased iron stores
If anyone wants any of the technical details, just email me. I also posted many of the details on the CLL Forum.
So, to all you prayer warriors out there. Thank you so very much. This treatment intermission is truly and answer to prayer.
Tuesday, July 18, 2006
MD Anderson Visit and Current Chemo Round
Hello all. I am sitting in a hotel room in Houston, only a few blocks from MD Anderson. However this time I am here for my work all week. I arrived on Sunday and will leave Friday afternoon. Doing OK, but struggling just a little. I never sleep that well the first few nights in a hotel and combining that with the Prednisone steroid I am on...well, you know the story. At least I am staying awake so far in class, although I did feel myself getting frustrated today with some of the comments from some of the students in class. I always get more sensitive on the drugs.
We drove down here to MD Anderson last week Tuesday afternoon as I had lab scheduled for 8 a.m. on Wednesday morning. We took the hotel shuttle over Wednesday morning and arrived at the fast track lab about 7:20. They have moved it to the other end of floor six over to the left coming out of the elevator and their time starts at 7:00. I registered and was taken almost immediately. Well, my doc appointment wasn't until 2 but we had already checked out of the hotel, so we went down to the lobby to wait. We were by the fish tank area and Cheryl started on a puzzle and I read the paper and helped her some with the puzzle (I get too frustrated to work too long on them), watched the fish, and wandered around some. We got to meet Jenny Lou's husband for too short a time. Jenny Lou is a member of ACOR, both are on the CLL Forum and they live in Austin. We have been trying to figure out a time to go out for dinner for months now. May happen soon. He had just driven in from the airport and he didn't have very long before his appointment. He looked really good and said he was feeling great after such a rough time dealing with his CLL. He promised we would all get together soon in Austin. Then he headed upstairs and we did too, as soon as Cheryl finished putting the 500 piece puzzle together -- she is good at it. We checked in about 1:20 hoping we might get in early, especially since there were not many people in the waiting room at all! Wrong. We were called into the back about 2:45 and saw his nurse who checked all the paperwork and gave us a copy of the blood tests from the morning. I will post them below. They were terrific. Then we waited and waited. About 45 minutes later, his PA came in and interviewed me and asked about my treatment, why we had started and why I hadn't done FCR as recommended last year. She wanted to know how Dr. Wierda could help me now. She left and we waited at least another half hour for Dr. Wierda to come in. He asked me all the same questions. Even though my oncologist sends him copies of all his notes, he hasn't seen them. Luckily I had copies with me (that also showed him as cc at the bottom). At first he sounded like he was upset that I had even started treatment, but I showed him that we had followed all the signs to start that he had given me last year -- absolute lymph doubling of less than six months as shown by several consecutive tests, nodes continuing to grow, platelets below 100, etc. He then was OK with that. However he was very disappointed that I didn't do FCR and wanted to know why. I told him it was my choice as I wanted to start with something less toxic. I also said that Dr. Hamblin seemed to agreed with me even though he does believe in FCR for certain cases. I told him I knew many people were fighting lung infections, sinus infections and other infections after FCR even though they were in remission (primarily due to the Fludarabine component of FCR). He said people get them all the time anyway, especially sinus infections, without CLL. I also told him because I had mono many times I didn't want to risk hurting the T cells yet and having that cause problems. He poo-pooed that too as he said 90% of people carry the EBV virus. I told him I knew that, but the folks that had full-blown mono were more at risk, especially for transition to a much more aggressive form. He really didn't respond to that. He said that folks who do FCR as first time treatment have a much better chance of remission and much longer remission. I asked him about the fact that nothing has shown any advantage for long term survival. He said that is only because the expensive studies have not been done yet. He is convinced that FCR will show much better long term survival and even some "cures" once long term, "expensive" studies are started and completed. I mentioned how so many of the CLL experts even disagree on proper treatment in many cases and mentioned David Arenson (see his blog link over on the right) who had just completed a trip around the country consulting with many CLL experts who all had a different opinion for his treatment. He acknowledged there was often not a consensus and that he sometimes disagrees with his colleague, Dr. Keating. What can I say. He is totally sold on FCR (as is Dr. Keating). Anyway, he said since I have started down the path I chose, I needed to complete it. He suggested a bone marrow biopsy (BMB) in August. He also said I should consider a one month Campath mop up if the BMB indicated 30% or more of involvement and then another month after if needed. He did warn me that Campath is even more toxic than fludarabine. That really bothers me too. He wants me to come back before starting another full blown treatment to see what clinical trials might be going on then. He mentioned one that might start within a year with a drug I have not heard of and can't remember now. It starts with the letter O but that is all I can remember.
We ended up leaving Houston during rush hour and got home around 9:30 p.m. and then off to my local doctor and chemo the next morning.
All in all I am not sure what I got out of the Houston trip, other than an "I told you so" from Cheryl and another "I told you so" from my local doctor the next day. In fact my local doctor was concerned that I made it clear that it was my choice and not his not to do the FCR. He said he didn't want Dr Wierda to think he was some hick and wouldn't refer anyone else to him. SIGH. So all in all, I felt a little beat up. It will be much harder to follow my own path in the future.
Thursday's 8th round (and I hope last round for a long time) of chemo went fine. I did the benadryl by pill instead of infusion and thus avoided the very annoying restless leg syndrome. I also slept through most of it again. Then slept some more when I got home. And, amazingly, slept for 5 1/2 hours that night! I have never gotten more than one hour's sleep the first night before. Then the next night another six hours sleep!
I go for blood work again next week and see my local doc in a month. He is planning to do the bone marrow biopsy later in August and he really wants to do a PET Scan this time, too. He said it will tell him if the swollen nodes in my chest, stomach and groin are active or not. At least he wasn't thrilled with the Campath mop up approach either. I guess we will wait and see what the bone marrow biopsy says and I will do some more research, too.
Anyway, here are only the highlights from the blood test at MD Anderson as there were 48 separate things reported. I will post the things we usually look for and anything that was either high or low. Strangely, this report doesn't show what their normal range is. It only stated H for high or L for low.
White blood cell count 4.7
Red blood cell count 4.13 L
Hemoglobin 14.3
Hematocrit 40.1
Mean corpuscular HGB 34.6 H
Platelet count 126 L (but up from 81 two weeks ago)
Chloride serum 110 H
Glucose 184 H (that's my diabetes messed up and it was nearly 400 at one point today even after insulin, but that is the steroid effect.)
Eosinophil percent 5.0 H
Metamyelocyte percent 1.0 H
Anisocytosis Occasnl (red cells of unequal size)
Poikilocytosis Occasnl (red cells of abnormal shape)
Neutrophil absolute count 2.30 (first time in normal range in a long time)
Neutrophil percent 49.0
Lymphocyte absolute count 1.88
Lymphocyte percent 40.0
B2 Microglobulin, serum 1.6
Immunoglobulin IgG 465 L
Immunoglobulin IgA 70 L
Immunoglobulin IgM 21 L
As I said above, I am really pleased with this and feel like I have gotten a very good partial response. Even though it looks like a lot of red, most are only a very little off normal -- but then again, I am a little off normal myself, so I guess it fits well!
As usual, thank you so much for your support and especially your prayers.
We drove down here to MD Anderson last week Tuesday afternoon as I had lab scheduled for 8 a.m. on Wednesday morning. We took the hotel shuttle over Wednesday morning and arrived at the fast track lab about 7:20. They have moved it to the other end of floor six over to the left coming out of the elevator and their time starts at 7:00. I registered and was taken almost immediately. Well, my doc appointment wasn't until 2 but we had already checked out of the hotel, so we went down to the lobby to wait. We were by the fish tank area and Cheryl started on a puzzle and I read the paper and helped her some with the puzzle (I get too frustrated to work too long on them), watched the fish, and wandered around some. We got to meet Jenny Lou's husband for too short a time. Jenny Lou is a member of ACOR, both are on the CLL Forum and they live in Austin. We have been trying to figure out a time to go out for dinner for months now. May happen soon. He had just driven in from the airport and he didn't have very long before his appointment. He looked really good and said he was feeling great after such a rough time dealing with his CLL. He promised we would all get together soon in Austin. Then he headed upstairs and we did too, as soon as Cheryl finished putting the 500 piece puzzle together -- she is good at it. We checked in about 1:20 hoping we might get in early, especially since there were not many people in the waiting room at all! Wrong. We were called into the back about 2:45 and saw his nurse who checked all the paperwork and gave us a copy of the blood tests from the morning. I will post them below. They were terrific. Then we waited and waited. About 45 minutes later, his PA came in and interviewed me and asked about my treatment, why we had started and why I hadn't done FCR as recommended last year. She wanted to know how Dr. Wierda could help me now. She left and we waited at least another half hour for Dr. Wierda to come in. He asked me all the same questions. Even though my oncologist sends him copies of all his notes, he hasn't seen them. Luckily I had copies with me (that also showed him as cc at the bottom). At first he sounded like he was upset that I had even started treatment, but I showed him that we had followed all the signs to start that he had given me last year -- absolute lymph doubling of less than six months as shown by several consecutive tests, nodes continuing to grow, platelets below 100, etc. He then was OK with that. However he was very disappointed that I didn't do FCR and wanted to know why. I told him it was my choice as I wanted to start with something less toxic. I also said that Dr. Hamblin seemed to agreed with me even though he does believe in FCR for certain cases. I told him I knew many people were fighting lung infections, sinus infections and other infections after FCR even though they were in remission (primarily due to the Fludarabine component of FCR). He said people get them all the time anyway, especially sinus infections, without CLL. I also told him because I had mono many times I didn't want to risk hurting the T cells yet and having that cause problems. He poo-pooed that too as he said 90% of people carry the EBV virus. I told him I knew that, but the folks that had full-blown mono were more at risk, especially for transition to a much more aggressive form. He really didn't respond to that. He said that folks who do FCR as first time treatment have a much better chance of remission and much longer remission. I asked him about the fact that nothing has shown any advantage for long term survival. He said that is only because the expensive studies have not been done yet. He is convinced that FCR will show much better long term survival and even some "cures" once long term, "expensive" studies are started and completed. I mentioned how so many of the CLL experts even disagree on proper treatment in many cases and mentioned David Arenson (see his blog link over on the right) who had just completed a trip around the country consulting with many CLL experts who all had a different opinion for his treatment. He acknowledged there was often not a consensus and that he sometimes disagrees with his colleague, Dr. Keating. What can I say. He is totally sold on FCR (as is Dr. Keating). Anyway, he said since I have started down the path I chose, I needed to complete it. He suggested a bone marrow biopsy (BMB) in August. He also said I should consider a one month Campath mop up if the BMB indicated 30% or more of involvement and then another month after if needed. He did warn me that Campath is even more toxic than fludarabine. That really bothers me too. He wants me to come back before starting another full blown treatment to see what clinical trials might be going on then. He mentioned one that might start within a year with a drug I have not heard of and can't remember now. It starts with the letter O but that is all I can remember.
We ended up leaving Houston during rush hour and got home around 9:30 p.m. and then off to my local doctor and chemo the next morning.
All in all I am not sure what I got out of the Houston trip, other than an "I told you so" from Cheryl and another "I told you so" from my local doctor the next day. In fact my local doctor was concerned that I made it clear that it was my choice and not his not to do the FCR. He said he didn't want Dr Wierda to think he was some hick and wouldn't refer anyone else to him. SIGH. So all in all, I felt a little beat up. It will be much harder to follow my own path in the future.
Thursday's 8th round (and I hope last round for a long time) of chemo went fine. I did the benadryl by pill instead of infusion and thus avoided the very annoying restless leg syndrome. I also slept through most of it again. Then slept some more when I got home. And, amazingly, slept for 5 1/2 hours that night! I have never gotten more than one hour's sleep the first night before. Then the next night another six hours sleep!
I go for blood work again next week and see my local doc in a month. He is planning to do the bone marrow biopsy later in August and he really wants to do a PET Scan this time, too. He said it will tell him if the swollen nodes in my chest, stomach and groin are active or not. At least he wasn't thrilled with the Campath mop up approach either. I guess we will wait and see what the bone marrow biopsy says and I will do some more research, too.
Anyway, here are only the highlights from the blood test at MD Anderson as there were 48 separate things reported. I will post the things we usually look for and anything that was either high or low. Strangely, this report doesn't show what their normal range is. It only stated H for high or L for low.
White blood cell count 4.7
Red blood cell count 4.13 L
Hemoglobin 14.3
Hematocrit 40.1
Mean corpuscular HGB 34.6 H
Platelet count 126 L (but up from 81 two weeks ago)
Chloride serum 110 H
Glucose 184 H (that's my diabetes messed up and it was nearly 400 at one point today even after insulin, but that is the steroid effect.)
Eosinophil percent 5.0 H
Metamyelocyte percent 1.0 H
Anisocytosis Occasnl (red cells of unequal size)
Poikilocytosis Occasnl (red cells of abnormal shape)
Neutrophil absolute count 2.30 (first time in normal range in a long time)
Neutrophil percent 49.0
Lymphocyte absolute count 1.88
Lymphocyte percent 40.0
B2 Microglobulin, serum 1.6
Immunoglobulin IgG 465 L
Immunoglobulin IgA 70 L
Immunoglobulin IgM 21 L
As I said above, I am really pleased with this and feel like I have gotten a very good partial response. Even though it looks like a lot of red, most are only a very little off normal -- but then again, I am a little off normal myself, so I guess it fits well!
As usual, thank you so much for your support and especially your prayers.
Tuesday, April 18, 2006
Confused Again
Well, I am a little bummed out, a little confused and a little ticked for the first time with my doctor. Also, back on steroids of course . (Even took my Ambien three hours ago and still wide awake.)
Today, actually Monday because it is now 3 a.m. on Tuesday, was my fifth round of chemo. That went fine as usual except my heart rate got too low for the chemo nurse -- in the 40 bpm range which made her machine beep every time -- and some restless leg, more of a restless feet, syndrome. She said next time we will do the Benadryl by pill instead of infused and along with not taking my blood pressure medicine the morning of chemo, I now won't take my beta blocker, Tenormine, either. I take the blood pressure med and the Tenormine to keep my heart rate down. Without them my heart rate is 150 or above, even when sleeping. I have been taking this combo for 20 years and it keeps my pulse rate in the 60 and 70 bpm range. I slept through the vast majority of the treatment and didn't even hear her change the last three bags and Cheryl said I snored through BP and pulse readings, too. She said I snored louder than she has heard me since I lost all that weight a year or two ago. I am sure THAT pleased all the others in the infusion room. Maybe that is why when I woke up there were no other patients left.
However, I am upset about the doctor visit before the infusion. I had blood work first as usual. As you know from previous postings, I have been very pleased with the progress so far. Well, the first thing he said was, "I think we need to stop the treatment, do a bone marrow biopsy because I think we have plateaued and you are only getting a partial response. Then if the bone marrow biopsy still shows 50 or 60 percent involvement, as I suspect, we need to change treatment to CHOP or FCR." (When we started the marrow was 90% infiltrated) WHAT??? I told him I thought we were getting a great response because my nodes had disappeared, my WBC and Lymphocytes were in the normal range. He said that is true, but my platelets aren't coming up and the Lymphocyte percentage is still 57 percent (at least I thought I heard 57, but it is really 52.6% and I didn't have a copy of today's test, yet) . I was shocked and went into my "no Fludarabine" speech about the long term affects they are seeing and the chance of Richter's transformation. He basically pooh-poohed that and said it would be a waste to keep going with treatment that isn't working. He then said I had to be careful about all the internet research I was doing because you can always find anything to support your position and FCR has had great results. I told him I knew that FCR got great results but I was researching legitimate sites that quoted actual CLL research documents from respected doctors. (I am going to find a bunch and email them to him tomorrow. I hope he reads them.) We bantered for 10-15 minutes about this. Anyway, bottom line is he is again going along with what I want and I will finish up with the one more round scheduled for three weeks from now, May 8th, then do the BMB (which I will insist be done by conscious sedation). I hope and pray the marrow involvement is way, way down. Cheryl wants me to listen to him because he is the one with all the diplomas on the wall. True, but I also know from reading in the CLL forum and other lists that doctors are not the all-knowing OZ and some are down right scary. Although I respect him, I can't put blind trust in him. Remember he wanted to treat immediately a year ago.
My daughter, Cindy, who is more supportive of my research, suggested that maybe I go back to Dr. Weirda at MD Anderson, do the BMB there and see what his opinion is. I was due to go back to see him in May of this year after he put me on watch and wait last year in May. That might not be a bad idea.
Here are today's blood results:WBC - 5.4; LYM 2.8 & 52.6%; *MID 0.3; GRAN 2.2; RBC 4.31; HGB 13.9; HCT 41.9%; MCV 97.2; MCH 32.3; MCHC 33.2; RDW 14%; PLT 93; MPV 10.1"
*MID cells may include less frequently occurring and rare cells correlating to monocytes, eosinophils, basophils, blasts and other precursor white cells."
Now this is a different lab from the tests from a week ago. But, the ONLY ones out of this lab's range are MCV, high by .2; MCH, high by .3; and PLT obviously low by 47. So how the heck can he say it isn't working when EVERYTHING else is in the normal range???? Even the Lymphocyte percentage is within his lab's normal range of 10.0 to 58.5%.
Told you I am getting grumpy.
Today, actually Monday because it is now 3 a.m. on Tuesday, was my fifth round of chemo. That went fine as usual except my heart rate got too low for the chemo nurse -- in the 40 bpm range which made her machine beep every time -- and some restless leg, more of a restless feet, syndrome. She said next time we will do the Benadryl by pill instead of infused and along with not taking my blood pressure medicine the morning of chemo, I now won't take my beta blocker, Tenormine, either. I take the blood pressure med and the Tenormine to keep my heart rate down. Without them my heart rate is 150 or above, even when sleeping. I have been taking this combo for 20 years and it keeps my pulse rate in the 60 and 70 bpm range. I slept through the vast majority of the treatment and didn't even hear her change the last three bags and Cheryl said I snored through BP and pulse readings, too. She said I snored louder than she has heard me since I lost all that weight a year or two ago. I am sure THAT pleased all the others in the infusion room. Maybe that is why when I woke up there were no other patients left.
However, I am upset about the doctor visit before the infusion. I had blood work first as usual. As you know from previous postings, I have been very pleased with the progress so far. Well, the first thing he said was, "I think we need to stop the treatment, do a bone marrow biopsy because I think we have plateaued and you are only getting a partial response. Then if the bone marrow biopsy still shows 50 or 60 percent involvement, as I suspect, we need to change treatment to CHOP or FCR." (When we started the marrow was 90% infiltrated) WHAT??? I told him I thought we were getting a great response because my nodes had disappeared, my WBC and Lymphocytes were in the normal range. He said that is true, but my platelets aren't coming up and the Lymphocyte percentage is still 57 percent (at least I thought I heard 57, but it is really 52.6% and I didn't have a copy of today's test, yet) . I was shocked and went into my "no Fludarabine" speech about the long term affects they are seeing and the chance of Richter's transformation. He basically pooh-poohed that and said it would be a waste to keep going with treatment that isn't working. He then said I had to be careful about all the internet research I was doing because you can always find anything to support your position and FCR has had great results. I told him I knew that FCR got great results but I was researching legitimate sites that quoted actual CLL research documents from respected doctors. (I am going to find a bunch and email them to him tomorrow. I hope he reads them.) We bantered for 10-15 minutes about this. Anyway, bottom line is he is again going along with what I want and I will finish up with the one more round scheduled for three weeks from now, May 8th, then do the BMB (which I will insist be done by conscious sedation). I hope and pray the marrow involvement is way, way down. Cheryl wants me to listen to him because he is the one with all the diplomas on the wall. True, but I also know from reading in the CLL forum and other lists that doctors are not the all-knowing OZ and some are down right scary. Although I respect him, I can't put blind trust in him. Remember he wanted to treat immediately a year ago.
My daughter, Cindy, who is more supportive of my research, suggested that maybe I go back to Dr. Weirda at MD Anderson, do the BMB there and see what his opinion is. I was due to go back to see him in May of this year after he put me on watch and wait last year in May. That might not be a bad idea.
Here are today's blood results:WBC - 5.4; LYM 2.8 & 52.6%; *MID 0.3; GRAN 2.2; RBC 4.31; HGB 13.9; HCT 41.9%; MCV 97.2; MCH 32.3; MCHC 33.2; RDW 14%; PLT 93; MPV 10.1"
*MID cells may include less frequently occurring and rare cells correlating to monocytes, eosinophils, basophils, blasts and other precursor white cells."
Now this is a different lab from the tests from a week ago. But, the ONLY ones out of this lab's range are MCV, high by .2; MCH, high by .3; and PLT obviously low by 47. So how the heck can he say it isn't working when EVERYTHING else is in the normal range???? Even the Lymphocyte percentage is within his lab's normal range of 10.0 to 58.5%.
Told you I am getting grumpy.
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