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.

Catching Up -- Again!

Well, you would think that since I am retired I would be able to keep this blog updated, but I really think I lose track of time much easier now. I figured I better update the latest before my good friends, the Dunns, send a big, burly, San Angelo cowboy down here to slap me around.

OK, lots of news and it is all good! I had my heart doctor appointment and he told me the enlarged heart thing was really nothing to worry about and that many people my age have enlarged hearts and don't know it. Hmm, "people my age"?????????? The young whippersnapper!

(A paste from the Word Detective: "Whippersnapper" is a somewhat archaic term, rarely heard today outside of movies, and then usually from the mouth of a character portrayed as chronologically-challenged and hopelessly old-fashioned to boot. A "whippersnapper" is an impertinent young person, usually a young man, whose lack of proper respect for the older generation is matched only by his laziness and lack of motivation to better himself.
One might imagine that the term derives from the understandable temptation among more productive citizens to "snap a whip" at such sullen layabouts, but the whips in question actually belonged to the whippersnappers themselves. Such ne'er-do-wells were originally known as "whip snappers" in the 17th century, after their habit of standing around on street corners all day, idly snapping whips to pass the time. The term was been based on the already-existing phrase, "snipper-snapper," also meaning a worthless young man, but in any case, "whip snapper" became "whippersnapper" fairly rapidly.
Though "whippersnapper" originally referred to a young man with no visible ambition, the term has changed somewhat over the years, and today is more likely to be applied to a youngster with an excess of both ambition and impertinence.)

But I digress (as usual). He said to be on the safe side he was going to send me for a chemically induced stress test and nuclear test (inject radioactive dye). Bottom line, I had the tests and everything looked very good and even plaque build-up that showed years ago seems to be gone.

I then had my monthly oncology appointment and my blood tests looked good. My platelets made it up over 100 again (they have really been bouncing) but my neutrophils are low. Lymphocytes still climbing slowly and the percentage is up over 80%. Now I know the percentage isn't that important and it is the absolute count that matters, but for some reason my doctor puts a lot of stock and emphasis on the percentage. He is really looking forward to my appointment at MD Anderson in Houston on the 12th. He made an appointment to see him again the very next week.

Another piece of good news is that my insurance finally approved the IVIg infusions. The nurse called me Thursday and it is set up for Monday, tomorrow, over at the hospital. Now initially when we were talking about this, my doctor talked about being in the hospital and the first time it would be given over a number of days, however that has changed. I will be at the hospital, but it will all be given at one time. He said to plan on five to seven hours this first time as it has to go very slowly as they watch for adverse reactions. I have initially been approved for once a month for five months, but he told me on the phone I may be getting this once a month for the rest of my life. This stuff is antibodies to help me fight infections and I wrote about it in a May blog entry which you can read HERE. I have had nine infections since last January, including pneumonia twice, bronchitis, ear infections, throat infection, and sinus infections. I really pray it helps as Dr. Hamblin posted in a reply to me last time, "The clinical trials have only shown a benefit in CLL for patients with IgG levels less than 300 who have had more than one bacterial infection in the past year." Mine are in the low 400s (723 to 1685 is normal at my lab) but I do have it beat on the number of infections!

And talk about time sneaking up on me, last Saturday was the annual Light the Night Walk fundraiser for the Leukemia and Lymphoma Society. Now I have participated in it for the last three years and through the wonderful support of family and friends, I have raised thousands of dollars. This year I didn't even set up my page until the Monday before and sent out the emails asking for support that Monday. But then the site messed up and the emails never went out. The email finally went late Tuesday and early Wednesday! However, folks came through again and by walk time on Saturday I raised $1,111. Not as much as previous years, but fantastic in such a short time. I still have a couple of other folks who have promised to donate and I have until the end of November to turn in the money. I really believe in the work they do as I personally know folks who benefited. My fundraising page can be found HERE. It was a good night with several thousand people walking. It was at a new location this year and was at the old hospital grounds where they recently opened the new Dell Children's Hospital. We walked past the hospital and they had the children on the oncology ward lined up at the window's waving to us and of course we waved back as we walked by. Here is a picture from the night with Snickers.


Our grandson who is living with us this school year, Jimmy (oops, "James") had a rough couple of weeks, but his medication has been adjusted and things are back on track. Most of his problems happened here at home (daily) and the two incidents at school were minor (compared to last year). His three week progress report came out and he has four A's, two B's, and two C's. That is such a huge improvement over last year when he had all C's and F's. We are so very proud of what he is accomplishing this year. Since he passed, he is back playing football. I hope I get done with my treatment tomorrow so I can go see him play in his last game.


Jonathan, my other grandson, got all A's and one B and I think my granddaughter also had all A's and one B. They get their smarts from their grandmother.


This morning a lady in my Sunday School class told us she just found out she has breast cancer. On the fifteenth she will have a lumpectomy and then radiation treatments. I don't want to put her name here as I didn't ask her for permission, but I would appreciate prayers for her. God will know who you mean.

Well, that is it for now -- all the news that's fit to print and some that ain't.