I finally have been able to speak with some actual humans at a couple of the study centers, and got some different and better news than I got from the person at Baylor. The contact at Baylor told me I must have tried and failed all four of the standard MS drugs in order to be considered for the study. There are three different interferon drugs, and two (Rebif and Avonex) are actually the exact same interferon, just a different delivery system, and then glutiramer acetate (Copaxone). I've done Copaxone and Rebif, but not Avonex or Betaseron. I was really upset to hear this because she told me I'd need to be on those other two drugs, one at a time, for at least "several months" and continue to show progression in my disease in order to have "failed," and therefore qualify for the study. This was upsetting because the last thing I should do is waste more months of my life trying drugs that already have been shown to be ineffective for progressive MS.
Anyway, I talked to contacts from Southwestern and University of Washington, and both of them told me I did NOT have to have taken all four drugs, and both thought I sounded like a good candidate for the study.
The Texas centers are just about ready to start recruiting patients (the next 3-4 weeks), and Seattle is already recruiting patients. In fact, they've already finished the procedure in 3 patients already. So I can start the screening process as soon as possible either in Seattle or at City of Hope in LA (I haven't talked with an actual human there, yet, but supposedly they are also currently recruiting patients), and then when the Texas centers are ready to go, they can switch me over to one of them. That sounds like a good plan to me!
The other thing I learned is that it will probably take around 6 months from the start of screening to the actual transplant. This is because I will have to get medical insurance approval for the trial. The funding for the trial doesn't cover the actual procedure and hospitalization. This is good and bad news. Bad news because it takes so long!! I'm afraid of what can happen in 6 months. Also bad because the point they "capture" my disability level is not at the very beginning of the process, but somewhere down the line. So I need to try to stay as healthy as I possibly can. They did say that even if I deteriorate after the point that they've "captured" my disability, it doesn't matter, I can still participate. But it is good news because apparently at least in Seattle, they have not had problems eventually gaining approval from the various patients' insurance companies. I guess they have coding procedures that help this along. The transplant itself is not experimental, just its application in MS. So anyway, if anyone knows anyone who works in claims for United Health Care, let me know!!! I need a friend there who can expedite things as quickly as possible. But the really good thing is that even if for whatever reason I do not get into this trial, apparently there is a possibility of getting insurance to pay for it anyway.
So, that's the news.
One other note. I know it may sound as if I am totally hanging my hat on the hope that this transplant will "cure" me. I can hear myself as some of you may hear me, and I know that some of you are concerned that I'm starting to really count on this working, and that I'm blinding myself to its risks, and the real possibility that it will not work for me. I just want you to know this is not the case. We understand the risks, believe me. But the mortality rates have gone down dramatically in just the 10 years this has been done in Europe, and the risks of me dying from this procedure are almost certainly smaller than the risk of me dying from this form of MS over the next 5 years. That's the dirty little secret about this form of aggressive MS. People actually die from it. There will be all sorts of psych evaluations to make sure we fully understand the risks before we'd ever be approved for this anyway. And as for us counting on this "curing" me, we're not. So far this procedure has not been a "cure." First of all, there is no way to reverse nerve damage that has already taken place. I'll never be "normal" again, and that's a fact. However, this procedure has been very successful in halting or greatly slowing the progress of the disease for at least a few years. The longest they've tracked patients so far is 5 years, and there are a good percentage of patients that have remained in remission for that long. And any time I do gain in remission is that much longer I can raise my kids without being totally disabled. And it buys me that much more time as new medications and treatments come down the pike. So in the event that my MS returns (and in all probability it will, eventually), hopefully several years down the line, my treatment options will (I hope) be better than they are now.
And the fact is, I don't have a lot of options. There are two other drug options that I could pursue (Tysabri, Fingolomid), and definitely will pursue if this transplant doesn't pan out for whatever reason. But taking these drugs now will disqualify me for the transplant, so I feel I need to follow this path to its end before I go the Tysabri/Fingolomid route. There are some clinical trials for new medications that I could sign up for, but none that are offering the kind of chance for remission as the transplant study. Plus, you enter into these trials for medications to take for 5 years or whatever, and you have a 50% chance of getting the placebo. Nice. Yes, I understand the need for double blind studies and all that, but I sure have a different perspective as the patient that is desperately looking for something to help me! I don't want a placebo!! Or I could do Novantrone for 3 years, hope it doesn't damage my heart permanently, all the while realizing it has never shown much benefit for anything other than secondary progressive MS which I don't have. And after 3 years, what then? The Cytoxan is still an option but this is apparently losing favor among neurologists because it is such a harsh treatment for such mild benefits. Honestly, my options are quite grim, and the transplant study has by far the most potential for really making a difference in my life. So we are running with it for now. It is giving me hope, and that's a big thing for me. I need to feel that there is some hope! But I'm not blind or stupid. I know it might not work, and if that happens, we'll deal with it. I'm not going to commit suicide or anything if it doesn't work. But I need to know I have tried EVERYTHING. And I need to try it NOW while I still have nerve function left to save!
So that is my big disclaimer. From here on out, I will probably act pretty enthusiastic about the stem cell transplant (because I do feel enthusiastic!), but please understand that I'm not blind or stupid. I won't give this disclaimer every time I speak of this procedure, so just consider it understood, ok?
I promise my next post will contain NOT A WORD about all this yucky stuff. I just know that some of you want to know.
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