6-15-10

Status: 9.5/10. Woke up this AM feeling just great.  A good night’s sleep with probably the highest hematocrit I’ve had in 6 months (still not up to normal as yet), but it’s amazing what you can do when your tissues are oxygenated.

Events:  That oxygen delivery system will get a test tomorrow when Lisa and I fly to Seattle, but before going into all that and the reason we’re taking off cross-country, I have to give you some background.

The usual treatment for acute myelocytic leukemia first involves a phase called “induction” (the treatment I just completed at Hopkins), whose purpose is the bring the leukemic process into remission by killing off huge numbers of the malignant cells and giving your bone marrow a chance to reconstitute a normal number of white cells, red cells, and platelets.  A complete remission means your peripheral blood and bone marrow look normal, albeit it’s known that some microscopic leukemic cells still exist.

 After letting you go home to heal, gain weight, and stamina for a month or so (what I’m doing now), patients are brought back in for another round of the same chemotherapy regimen (called “consolidation”) to bring the leukemic cell numbers down to as close to zero as they can get.  Now, a small percentage of patients (2-3%) will actually kill off each and every leukemic cell, and that fortunate small group is cured.  But the vast majority of patients don’t get every cell and the leukemia returns, and at that point you have to deal with it again. The period from going home after consolidation to recurrence may be 6 months, a year, even 18 months, but like ants at a picnic if you don’t stomp out every one, you’ve still got a ruined picnic.

In examining my leukemia, they were able to identify a specific genetic mutation in the gene called FLT3 (referred to as flit 3), which occurs in about 30% of leukemic patients.  Studies have shown that in patients with this mutation the recurrence happens rapidly.  In other words, you don’t have a year and half to wait.  So the question is what do you do and when.  The answer is a bone marrow transplant and relatively soon.

A bone marrow transplant involves giving what amounts to a lethal dose of chemotherapy to kill off the bone marrow (and with it the leukemic cells), and then giving bone marrow from a donor to (in a sense) bring the patient back to life.  You’re taking a flame thrower to the picnic, which will get rid of the ants, but pretty much guaranteed to destroy your afternoon.  You had better plan on bringing another blanket, picnic basket, and some lemonade, along with the flame thrower if you still want a picnic.  And the best time to do a transplant is when you are in remission – if you wait for a recurrence it’s problematic.

 So the plan is to proceed with a bone marrow transplant, and in about 6 weeks.

Just as it’s critical to give a blood transfusion with the same blood type, the bone marrow from the donor has to be genetically matched to the recipient.  I am truly fortunate that my brother Terry is a perfect match, and that he has graciously volunteered to be my donor.  I cannot tell you the love I feel for him and what this means to me.

Comments:  It would probably not surprise you to learn that Lisa has spent the last month talking to the Directors of the leading transplant centers in the U.S. (Fred Hutchinson Center in Seattle, Sloan-Kettering in NYC, M.D. Anderson in Houston, Dana Farber in Boston) as well as the transplant folks at Hopkins.  In fact, when she talked to the head of the NIH transplant group he couldn’t believe she had spent an hour on the phone with the heads of the top-tier centers.  His comment was, “You really spoke with all of them?”  No surprise on this end.  President Obama just ought to be glad she’s not on the White House beat.  I couldn’t have picked a smarter, more aggressive, non-stop, patient advocate – or a better friend and sweetheart.

The major issues now are what kind of transplant (the full flame thrower or a reduced intensity ant killer), where to have it (it will be about a 100-day process), and some other issues as you can imagine.  We have spent a great deal of time discussing all this with the Hopkins group, and we’re flying to Seattle to consult on Thursday with the folks there to get their considerable counsel.

I’ll tell you more about what the process entails and our schedule in the coming days.  But just wish us safe travel (I promised Lisa I’d keep my opinions and comments about air travel to myself, and not try to change the airline industry over the next few days).

 Love to everyone of you,

-Bruce

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13 Responses to “”

  1. Lewis Lefkowitz Says:

    Pass my appreciation to your parents that you are not an only child. Judy and I send our love to the whole family.

  2. wendy Says:

    Perhaps- it was fate that you met Lisa at a conference. Fate intended her to be your support team down the road that you didn’t know you were heading. Let’s count your blessings. Let’s see- Terrry’s match and donation, Lisa’s expertise, genetic family line that’s smart and strong…2 talented and adorable children and a community of family and friends pioviding support in all areas of your life and cheering you on… Yep -I think you’ve got all the ammunition you need to get that CURE that you so deserve… Yep, I said CURE… I do believe!!!

  3. Donna Hill Howes Says:

    I have always been a great fan of your beautiful bride, Lisa. Go, Lisa, Go! God speed on your important journey to Seattle, and God Bless perfect matches who also are generous and adored….and now by all of us! Love to you all. Donna

  4. Judi Golding-Baker Says:

    Oh this is such wonderful news! My dear Lisa and my dear Bruce, safe travels tomorrow…

    Love you both
    Judi

  5. Judy Moss Says:

    Bruce
    Although we hate what you have been going through we are so happy that you are in remission and that Terry is a perfect match. We hope and pray that the transplant is successful and that you both live many more happy and healthy years. Travel safely and good luck getting your second opinion.
    Love, Judy and Larry

  6. Margot Mahoney Says:

    Bruce, you are amazing – as is Lisa and Terry. I hope your trip will serve to make this next phase as simple, controlled and successful as possible. Your explanation was perfect – just what I would expect! I still have trouble coming to the reality that this is you – speaking of your own situation! But no one says it better – so there’s my proof. Let us know what we can bring to the picnic to support you from as close as we can when the time comes! Safe travels and Love to all.

  7. Debbie Blum Says:

    A 9.5/10 is something to celebrate! I have been following your blog and am so very glad you are doing so well. Your support network is truly amazing. Please, please let me know if you and/or Lisa would like to speak to me about my stem cell transplant (for AML/MDS) and all the decisions surrounding that. Briefly, I had a full intensity conditioning regimen and then a t-cell depleted transplant at Memorial Sloan-Kettering. I was also lucky that my sister was a complete match. I did not need immunosuppressives post-transplant and had no GVHD. Please let me know if I can help in any way with further information.

    Here’s to a 10/10 in the near future. Keep well.

    Debbie

  8. Bill Israel and Eileen Breslin Says:

    Bruce:

    We want to be flame throwers, ant stompers, whatever can be helpful in getting you through this. Who says a reporter isn’t everybody’s best friend?

    With love and hugs,

    Eileen and Bill

  9. Fred Southwick Says:

    Dear Dan,
    Glad your WBCs are up and that your gaining strength. Thanks for sharing your experience with all of us. It is critical to see things from the patients view point. As patient volume increases too many health care providers begin to see patients simply as objects. We must be constantly reminded of the suffering each patient is managing. Empathy and true compassion can go a long way, and are as necessary as the medications. Asking each patient how he or she is feeling and how we can help is so important.
    Thanks
    Fred

  10. Fred Southwick Says:

    Sorry I meant Dear Bruce, My apologies.
    Fred

  11. Karen Jaffe Says:

    Dear Bruce after reading this entry I am compelled to send you a note of thanks for including me/us in this amazing adventure. It may seem odd to use that word but you have turned your own medical crisis into an educational, philosophical, and personal journey for all of us and because we know this blog is read internationally and by some who don’t even know you – for the world.

    I feel like I’m getting on that air plane with you (skip the peanuts)

    xxooKaren

  12. joel steinberg Says:

    Thankfully you have a perfect bone marrow match ready and waiting. I don’t have to tell you how lucky you are in this regard. I have always thought that every baby born should have his cord blood/placenta frozen and kept forever, just for this situation. But maybe the costs would be too staggering. I’m sure you will come to the right decision and get the best possible treatment. Margaret and I send our best hopes and wishes.

  13. Gail Lehmann Says:

    Bruce, thank you for writing your blog in a way that lay people can understand it! Needless to say, I am very proud of my cousin LISA and never doubted she would rise to any challenge. It runs in the Engelman family women!!
    Glad to hear you are staying close to home at Hopkins for your transplant. Support systems are critical to success.
    Much Love,
    Gail

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