So it's all over the news. Michael Jackson was allegedly taking Propofol for insomnia, of all things. This is the drug that they damn well better be giving me before the FNA and the bone marrow next week. If I am lying on the gurney getting ready to be wheeled in to the interventional radiology room with that snake handling maniac doctor, and they aren't going to give me Propofol, I will get up and walk out, it's as simple as that.
Meanwhile, I've been compiling some questions for BB (some of which I will also ask SF, in the odd chance that I get the opportunity to speak with him before going back to Arkansas).
1. My understanding is that the success rate of getting people into complete remission using thalidomide and dex for several cycles is quite high; adding Velcade to the mix should make it even higher -- perhaps close to 100%. Should I not have undergone more induction and thus put myself into remission, or close to it, BEFORE the transplants? If not, why not? What is the rationale for doing the transplants BEFORE the best possible reaction from induction therapy is reached?
2. Since it is better to achieve CR than not (there can be no such thing as "event free survival" when I have an ongoing event), given that I responded to induction, with the benefit of hindsight would I not have fared better with a second cycle of induction? [This question is close to the first one but gets directly at the potential shortcoming of the Lite arm of TT4)
3. If I do achieve CR now, given that I've already had the transplants (versus having them after remission has been achieved), is my CR less quality than would have been the case? Other doctors have described the transplant as a means of eradicating any cells left over after induction has created remission. Obviously in Arkansas the transplants are used as part of active therapy, not consolidation. What is the biological benefit to this?
4. If I respond to consolidation but I do not yet reach complete remission, can I get a second cycle of consolidation? If not, why not?
5. Of those enrolled in TT3, how many achieved remission AFTER consolidation? And how is their event free survival rate and sustainability of remission relative to those who achieved CR BEFORE consolidation?
6. Of those enrolled in TT4, how many achieved CR in the lite branch versus the standard branch?
It's hard to imagine answers to these questions that would put me at ease, frankly. But BB is a confident person, to say the least. Listening to my initial consult with him again, it reminded me of why I went there. I asked him "what's the typical treatment plan for a recurrence" and his response was "the likelihood of recurrence is so small, we don't have a typical program."
So perhaps he can answer the questions above very clearly and confidently...we shall see.
I called SH's office to try to get my results of this past Tuesday's blood tests, but they are closed for the holiday. So I shall have to wait until Monday to find out if my M-spike stayed at 0.3. And then on Tuesday, it's back to Arkansas. More news as it becomes available.
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What defines complete remission? What defines "cure"?ReplyDelete
My husband had "no detectable M-spike" for about three years on thalidomide and dex with great quality of life. He worked full time as a fifth grade teacher. BUT..that was before freelite was done routinely, do who knows if he was truly free of abnormal protein? (IgG was normal).
He also achieved "no detectable M-spike" with Revlimid for almost a year, but never had a normal freelite.
He had two transplants one autologous in 2001 and MUD allo in 2005...neither gave him CR.
I'll look forward to the answers you get from BB and I hope that you get your cure, and if not, may you have years of stability at 0.3.
I know your first two questions are at least partially rhetorical, but I nonetheless do have answers for them. :)
Complete remission is defined as the doctors being unable to find any trace of the disease. This is the state which Dr. SH told me that he would be 90% likely to put me in with an induction regimen of thalidomide and dex. As the ability of medicine to measure the disease has improved, the definition of complete remission has become more stringent. Your husband, to the extent he had elevated light chains, was never in complete remission. Although he was certainly with a very good partial remission if the M-spike was not detectable.
Your second question can be answered several ways, but my favorite definition is that "cure means growing old and dying of something else." As SH pointed out to me the other day, if somebody had Leukemia, lived another forty years, died of something else, and there were leukemic cells in the blood at the time of death, we he/she cured? I was call this a "functional cure", certainly. But this is not the type of cure that I came to Arkansas for. I came to Arkansas, and underwent the most aggressive possible treatment for newly-diagnosed Myeloma (short of a full-blown allogeneic transplant), in order to have all traces of the disease eradicated. Gone, and never to return. So anything short of that is going to be a disappointment -- both to me, and to BB, who joking said in my second meeting with him that if I wasn't cured he was going to be extremely "pissed off" at me. :)
I hope your husband is continuing to do well and that he will have a functional cure if not an out-and-out eradication of all traces of the disease. Thank you for your comment!
Despite the apparent setbacks, I'm still floored by how well your treatment has been going. I think it's clear from what you've written that while CR is going to take more work than predicted not long ago, it's an inevitability. Hopefully BB is telling you pretty much the same thing.ReplyDelete
When I was 10-12 years old, I had lucid nightmares that I couldn't get out of. I remember reflecting in the middle of one that I *know* I'm going to get out of here eventually, that's a given, but when?! How much more of this am I going to have to put up with? An unpleasant dream is hardly cancer, and maybe my analogy is grossly inappropriate, but hopefully it helps illustrate that getting through this successfully is a question of when, not if.
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