My calendar tells me that it’s been more than five months since the last update. As I’ve said before, that’s usually a good thing because it means I’m healthy and not needing treatment. Since August, I’ve been to Dr. Sayegh here in Sac twice, both times with reasonably good news. My white blood cell count has been fluctuating up and down, but all within the normal range.
When I last wrote, it was about Stanford, Episode III: The Revenge of the Smith. Truthfully, not much actual revenge going on. But if I continue that theme, Episode IV’s title seems appropriate for the discussion. Admittedly, I’ll have to be creative about incorporating Episodes V and VI into future updates. Or abandon the theme completely.
Back to the point……I met with Dr. Miklos at Stanford again on January 19. We discussed lots of technical stuff about cells and DNA and RNA and P53 mutation (*snore*, easier reading here), and then got into the reason for my visit, which was to see how the clinical trial was progressing and what it meant for my case.
Before I get into that, I know that there are some new folks on the list these days, and since I gave details of the clinical trial in my February 2006 update, you new folks don’t have the basic background info. Here it is.
One of these days, I’ll get around to posting all my updates somewhere on the interwebs so you all can read them from beginning to end, or fall asleep somewhere in the middle. More on that later.
The clinical trial is going quite well. Only two people out of 120 total patients have died, and one of those was by suicide, so it doesn’t count. Well, it counts as a death, sure, but it wasn’t from the transplant or related complications. Not that I’m making light of suicide. Or pre-apologizing for offending anyone, for that matter. Regardless, 2/120 is 0.016666667, or 1.7% mortality. Yes, that’s rounding up.
Another positive showing is that graft-versus-host disease occurrence is way down. A handful of patients have experienced chronic GVHD, and it was successfully treated with topical steroid creams with no long-term treatment required.
We then turned the conversation to the pros and cons and other reasons for moving forward with a transplant now. First, the cons, which are simple:
-New treatments could be developed in the future that would eliminate the need for transplant. The future is indefinite, and no currently existing research is moving in this direction. Hypothetically, I suppose anything is possible.
-The 1.7% mortality rate, while low, is not 0%. There is a risk of death. No other way to say it.
Now that I’ve cheered you up, here are the pros:
-I’m young, compared to the typical patient with CLL.
-My potential donor is a very good match. I say “potential” because the donor still has to pass a battery of tests to confirm that she is otherwise healthy and ready to donate.
-The treatment protocol is showing very positive results, as described above.
Finally, other reasons:
-There is disease present. Even though my overall white blood cell count is still normal, my lymphocytes are increasing (currently at about 50%) abnormally. This is an indicator of CLL.
-It’s been a little over six years since my diagnosis. On average, my brand of CLL transforms into something more aggressive 10 to 15 years after diagnosis. The longer we wait, the higher the risk of transformation becomes. Keep in mind that the time range is just an average, and it could occur earlier or later.
-I’ve already had two chemotherapy treatments. While it’s possible to have more chemo to postpone the transplant, it’s not necessarily a good idea because it will incrementally cause more damage to my body’s ability to handle a transplant later. In CEQA terms, this is called a cumulatively significant impact (Section 15355).
So, taking all this information, we’ve decided that it’s in my best interest to move ahead with a transplant. We have lots of homework in order to prepare, and have not set a date yet, though late spring or early summer seems to be our first choice. Specific prayer requests:
-Housing for the 3-4 months when I’ll be staying near Stanford. This is huge. Several of you have offered suggestions, and I appreciate all of them. We’ll be looking into many options, and won’t turn away offers of a free place to stay, as long as it meets the criteria.
-Finances: This may or may not be a big issue, depending on what my insurance will cover and what the housing situation is. My initial reading of my insurance coverage leads me to believe that they’ll fully cover everything except housing (not covered at all) and prescriptions (co-pay).
-Caregiver(s): During the 3-4 months I’ll be at Stanford, I’m required to have a 24/7 caregiver. This person will shoulder tremendous responsibility–cooking, cleaning, running errands, shuttling me back and forth to the transplant center, and lots more.
-Donor: As I mentioned, she still has to pass the medical evaluation before the transplant can happen. Since I don’t have another match at this point, it would be good if she passes.
-Whatever else that comes up. There are lots of details yet to be worked out.
We have not entered into this decision lightly, and have sought God’s guidance throughout this process. We honestly feel that this is His direction for me at this time, though it requires a great deal of faith on our part. It’s not easy to willingly submit to a transplant and all that goes along with it when I feel healthy. Nonetheless, we have chosen to follow.
One final note: One of the rules is that I won’t be allowed to use a traditional razor after transplant and during recovery. This is because they want to minimize infection risk, and if I cut myself, it would present an opening for bacteria. So, I’m now in the market for an electric razor. If any of you have experience with such a gadget, I’d love to hear your feedback on which brand is your preference and why. One caveat: the Philips Bodygroom is not an option.
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