I'm sure the title will be lost on most of you, but it's a song title.
As it happens, it also relates to chemotherapy.
I've mentioned recently that Dr. BB's work at least speaks in terms of a cure. That much is great. But now I'm researching a lot on it...and it involves hardcore chemotherapy. Four kinds of it, in fact. And it is daunting to think about how sick I will get. With the one-transplant standard protocol, we're talking about two days of very intensive chemo, and one kind (Melphalan). That's destructive enough. But BB has FOUR MONTHS of FOUR DIFFERENT KINDS of chemo in total, PLUS four days of intensive Melphalan.
The mortality rate for a standard transplant is about .5%, and given my age, Dr. SH told me my risk is about 1 in 1,000. Frankly, with my luck lately, that doesn't strike me as all that great.
But BB's treatment-related mortality is 5%. TEN TIMES as great. This stuff makes you very, very sick. Now granted, my age should be helpful. If the same co-efficient applies, I might still be considered a 1 in 100 mortality risk. I think I could live with that, if his data is true that there's a 50 percent chance that I'll be cured.
I heard back from one woman who went through BB's Total Therapy 3 protocol. It's the holidays and she is busy but she indicated she would write more to me later this week, and I will ask her all about side effects and her treatment experience.
More to come.
Monday, December 29, 2008
City of Dopes
These people, administratively, leave a lot to be desired.
We got a call at home today, informing me that my appointment tomorrow has been unceremoniously moved. They didn't bother asking me to see if it was okay, and of course it's not. So we've had this on the calendar for more than a month, and on 18 hours' notice they figure they can just call and change it? Sorry. I moved my whole day around tomorrow to accommodate the appointment.
I called and voiced my displeasure. I can't really have blood drawn right now anyway because I'm getting over a bad cold and that will cause a normal immunoglobin response in my blood, which will throw off all their tests. So for now, we're going to try for the 13th...which is later than either I or the doctor wanted.
I'm close to calling Dr. F who is the director of the City of Hope, and who a friend of mine put me in touch with. At this point, all that would happen is Dr. SF would get a slap on the wrist and I'm not sure I want to do that yet.
Meanwhile, Dr. BB needs me in his offices for an entire week, which is going to throw off scheduling the appointment with Dr. DW. I may just cancel the latter as I'm starting to get doctor fatigue...but perhaps I'd better do it anyway. I'm continuing to think of BB's treatment as something I should do. The way I look at it, there are three potential cures: (1) BB's program actually works, (2) a novel new drug comes out that, in combination with other drugs or on its own, prevents Myeloma, or (3) allogeneic transplants improve in safety. It seems like I can pursue #1 without affecting #2 or #3...I guess the only downside would be the effects of all the chemo and whether or not so many drugs actually hurt my body (potentially causing another kind of cancer, for example). Hard to say.
Spending two weeks away from home in the coming weeks is going to be challenging for the kids, especially Parker. I'm wondering if sometime soon we need to tell her something is going on...I'm hoping we can put that off, still.
We got a call at home today, informing me that my appointment tomorrow has been unceremoniously moved. They didn't bother asking me to see if it was okay, and of course it's not. So we've had this on the calendar for more than a month, and on 18 hours' notice they figure they can just call and change it? Sorry. I moved my whole day around tomorrow to accommodate the appointment.
I called and voiced my displeasure. I can't really have blood drawn right now anyway because I'm getting over a bad cold and that will cause a normal immunoglobin response in my blood, which will throw off all their tests. So for now, we're going to try for the 13th...which is later than either I or the doctor wanted.
I'm close to calling Dr. F who is the director of the City of Hope, and who a friend of mine put me in touch with. At this point, all that would happen is Dr. SF would get a slap on the wrist and I'm not sure I want to do that yet.
Meanwhile, Dr. BB needs me in his offices for an entire week, which is going to throw off scheduling the appointment with Dr. DW. I may just cancel the latter as I'm starting to get doctor fatigue...but perhaps I'd better do it anyway. I'm continuing to think of BB's treatment as something I should do. The way I look at it, there are three potential cures: (1) BB's program actually works, (2) a novel new drug comes out that, in combination with other drugs or on its own, prevents Myeloma, or (3) allogeneic transplants improve in safety. It seems like I can pursue #1 without affecting #2 or #3...I guess the only downside would be the effects of all the chemo and whether or not so many drugs actually hurt my body (potentially causing another kind of cancer, for example). Hard to say.
Spending two weeks away from home in the coming weeks is going to be challenging for the kids, especially Parker. I'm wondering if sometime soon we need to tell her something is going on...I'm hoping we can put that off, still.
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