Tuesday, June 8, 2010

Three more days

On Friday, at 8am, I will be in the Scripps Green Hospital, transplant unit, and the conditioning chemotherapy will begin. I will be there no less than a month, and possibly up to five. I hope 1) not to be killed by tumor lysis syndrome (TLS), and 2) that the experience will be less difficult than the one in September 2005, when I had a full autologous transplant from my own stem cells (which were collected and frozen in 1998). If I make it to a week from Friday, I will probably be OK, at least until we learn the extent to which I will have residual graft vs. host disease (GVHD). It could take months to discover, or be obvious right away (not good).

The essential difference, by the way, between a reduced-intensity allogeneic transplant from a matched but unrelated donor (MUD, which stands for "matched unrelated donor"), and an autologous transplant, is between chemical destruction of the old bone marrow (with melphalan) and biological destruction of the old bone marrow (by the donor's stem cells). The autologous does not cure, but the MUD can. However, even if the cancer is gone forever, there will be some GVHD that is often permanent. It can be mild, and it can be anything but mild to the point of attacking connective tissue or even the organs and causing death. I  believe that by having a donor with a 9/10 HLA match at the genetic level, the worst isn't going to happen. But...you never know.

It will also be good if the donor cells, which are being flown by courier here next Tuesday, are successful in attacking my cancer cells and my marrow. It is possible that I could end up with a bad result: both immune systems surviving in what is called a "dual chimera." The two won't be friendly to each other.

On the other hand, I found a new drug, recently approved for adults, that practically eliminates the risk of TLS, the only complication at all likely to kill me up front. A friend of mine, who had an autologous transplant, had TLS. His kidney functions stopped and there was risk of kidney death. He was on daily dialysis for many weeks, with other medications being pumped in to protect/restart the kidneys, but he was delirious, incoherent, and non-responsive for most of that time. I visited him often. I think he knew I was there but I could not understand him, and, later, he had only vague memories, but, amazingly enough, they pulled him through and the kidneys started to work. He was lucky. Sadly, though, he had waited too long for the autologous transplant and did not get a significant benefit from all of that suffering.

The new drug is called Elitek (rasburicase). Doctor and I agreed yesterday to add it to the protocol. The only potential problem for me is a severe allergic reaction to it, but, being allergic to nothing, I suspect I'll be ok. So the risk of immediate death drops from 20% to something much lower and I no longer am apprehensive about the next week or two. The Russian Roulette game is now being played with a couple of extra empty cylinders.


Today I must finish a revision to my will and add a codicil. It isn't what I needed (family trust, etc.) but it will be enough.

N.B. — My head is full of dex, so I might be incoherent myself today. Sorry.

8 comments:

  1. Good luck Lon . . .
    If you need help w/ that Grey friend of yours just say the word!
    Dr. J

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  2. Sounds like your new name is Hobson. If any one can survive all this uncertainty it is you.

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  3. Good Luck Lon. I hope that everything will go good with you. My husband died last year after 10 yrs with mm.I have been so tired of cancer and I tried not to think about it, but for some reason I have felt that I wanted to keep up with your journey and hope that you would beat this thing. I hope to keep up with you for a long time.

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  4. Lon-I will have you in my prayers on Friday. And since I live in Philadelphia, those prayers will be winging their way towards you before you arrive at the hospital. You sound like you have a good attitude about what may, or may not, happen so that will take you far in this latest challenge.
    Nancy Stewart, MM '08, ASCT 1/10

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  5. Lon - I will be joining the blog-angels prayer group with my megatron intention machine - it beams good intentions at warp speed to bring you through this adventure and in better shape on the other side... I'm starting it up today and will keep the fire under it until we hear from you. I'm not hoping, I'm intending - I believe your miraculous recovery from the four-month brain vacation is a good sign of more good to come.

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  6. Lon, I have followed you for a long time and expect to continue doing so! I have 2 'special' things that help me. One is the word HOPE.
    Learn from yesterday
    Live for today
    Hope for tomorrow

    The other is my ANGELS. I 'feel' my parents and a very special friend watching over me.
    I'm sure you have special things to give you strength...one being your beautiful new wife! But you may also use mine if you like! Everything will be OK!
    I will be thing about you and praying for you daily. Sylvia.... ASCT 8/08. In remission.

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  7. Lon,
    The best of luck, you will be in my thoughts and prayers in the coming days. I think it is a good decision on the rasburicase. One of my support group members was given Bendamustine, if I remember correctly you have taken, and her numbers dropped by 50% and she had kidney failure. I am fairly sure she did not receive rasburicase with her treatment. My husband was given a infusion of rasburicase 5 weeks ago when we were in Little Rock for high uric acid.
    Hang in there.
    Darlene Jessee

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  8. Medical musings is a great information about medical field thanks for sharing

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