Tuesday, December 20, 2005

What If They Find Nothing Up There?

I saw the neurologist this morning. I was impressed with him, a great doctor. I really have been fortunate to see some great folks. He thinks the pain in my, hmm, how to say this delicately, butt, and the backs of my legs is from lower back problems from my spinal deterioration. He thinks the numbness that happens on the top of my upper legs is from pinched nerves. Perhaps from swollen lymph nodes or perhaps from the back again. He has ordered an MRI, since earlier this year only X-rays were done on the lower back and the MRI was only done on the middle, upper, and neck region. I will then go back to his office on January 4th for some type of nerve tests. I don't know what that test is other than he said to bring a pair of shorts to change into. You would think I would learn to ask those questions while there and not wonder about it afterwards. He did say that it will be good to have a baseline on this nerve test because chemo can sometimes damage nerves and if that should happen, he will know where we started.

He doesn't know what to make of the memory loss. He said perhaps it is the stress of everything else that is going on with me. Perhaps that is true. I have really been making a lot of strange errors lately. I posted something twice to ACOR. Once last night and then again today. I noticed in a posting here on Dec 13, that I said to look for a link to David Arenson's blog on the left. It is on the right. I was giving away some stuff we had in our garage and I emailed the directions to our house to the person I was giving it to, but they were totally opposite. Every right turn should have been left and every left should have been right. I even had our house on the wrong side of the street. Then this Saturday we had a church Christmas party at our house and I sent directions to one person that had right and left mixed up again! My youngest daughter and my wife are dyslexic, not me! I have never mixed up left and right before. But then again, with my current memory, maybe I have and just don't remember. Ha! Anyway, the neurologist also ordered an MRI of my brain. They have an MRI from about six years ago when I had a mini-stroke and they can compare the results to that one. I am just wondering what he will do when the MRI shows just an empty cavity and there is nothing up there? I don't think brain transplants have been perfected yet.

Back to my treatment options. It sounds like I am on the right track with thinking about Chlorambucil as first line treatment from all the advice I am getting over on ACOR. I am also getting advice to slow down. Then, the great, fantastic, wonderful, Dr. Terry Hamblin, from the UK and one of the foremost CLL experts in the world, wrote to me. (It amazes me that a man of his stature and involvement in so much - just do a Google search on his name - takes so much of his time to help us out and answer questions and concerns over on ACOR.) I didn't even ask him specifically, but he took the time to answer me anyway. He is a wonderful, Christian man. Look at this post on his Blog for a Christmas Carol he wrote: http://mutated-unmuated.blogspot.com/2005/12/christmas-carol.html

Here is what he wrote to me:

"Dear John,
Good prognostic factors do not mean that the CLL will not progress, nor that it will never need treatment. On the other hand they do mean that the CLL is likely to respond well to treatment and that you are unlikely to die of the disease. I have certainly seen patients with good prognostic features eventually succumb to CLL or its treatment, but it has always been late in the disease at around 20 years follow up. Your lymphocyte count has gone from 15.94 to 29.4 in 6 months. This is just short of doubling in 6 months, you don't quite reach the threshold for treatment. However, this decision should not be calculated on just two tests. The trend should be measured with several tests so that an accurate assessment is made. Your platelet count has fallen from 118 to 100. Again, not quite reaching the threshold. The same strictures apply. You are not interested in a single observation. The next one may have gone up again. I do think that Chlorambucil is a good first treatment option for patients with CLL with good risk prognostic factors. Patients are likely to live for a very long time and if the suppression of CD4+ T cells that fludarabine induces can be delayed until later in the course of the disease, so much the better. Rituxin is moderately successful as a first line treatment, though CLL cells have less CD20 on their surface than other B cells and it seldom produces anything better than a PR.
Terry Hamblin"

(PR = partial remission)

What a terrific note, and so filled with optimism for my situation that it gives me great hope. I am taking his note with me to the Dr. on January 9th. He knows who Dr. Hamblin is and gave me some papers that had results from some of Dr. Hamblin's research. The only thing I wondered about was that if you look at the June lymphocyte count from the local lab that did the December work, that was 14.8. The lab in Houston had it at 15.94 in June. However, it is a small difference and still takes me to .2 away from the six month doubling time. His main point is well taken. You shouldn't base it on just one test, but should look at several. I do look forward to getting the swelling of the lymph nodes to go down, though.

David Arenson, among others, also wrote to me with lots of great advice. He also reminded me of his "three-day rule" that he wrote about on his Blog. A great analogy about being able to cancel sales of time shares that you might be pressured into. He further stated, "Sometimes that needs to be three weeks or three months! Don't let your doctor's scheduling drive the bus. It is important to take all the time you need to come up to speed on what might be best for you." Good advice. Slow down and smell the poinsettias, er roses.

As I reread the last couple of posts, someone might get the idea that I am panicking or scared of the treatment. Not at all. There is no fear at all! I am only concerned that I do the right thing and not mess up options for later on.

Well, I am off work until after Christmas. I took a couple of vacation days (nice change from sick time off). Tomorrow I am Christmas shopping for Cheryl and also trying to figure out a nice gift for our anniversary on Friday. Cheryl is off starting Thursday, until January 2nd! And it is free time, not charged to vacation days! If I can follow the directions for posting pictures, I will post a picture of our decorated home. I am the "Clark Griswold" of our neighborhood. (Reference to “National Lampoon’s Christmas Vacation starring Chevy Chase).


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