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Thread: Dianosed with CMML

  1. #11
    Newbie New User
    Join Date
    May 2019
    Po, Thank you. I just registered with BMT Info yesterday. The Huntsman doctor thinks that locating a matching donor should not be that difficult. Apparently, the Donor Registry in Germany is quite impressive and being German, I have at least that going for myself. I also have a friend in my neighborhood from Europe who is willing to get tested. The doctor further said that if a donor cannot be found, they would use cord blood. Siblings are 50% match, children and parents are 5%, at least that is my understanding.
    I am just glad that my type of leukemia does not require the whole body irradiation. Chemo is bad enough, but a 5 day regimen should be doable. I am such a chicken when it comes to invading my body. Always anticipating adverse reactions and then self-inducing them. I should use my powerful mind for more positive reactions!

  2. #12
    Hi Astrid!

    I am certain this whole process seems a bit intimidating. Hopefully, you will find a suitable match off the registry. I think most of us do, tho PO is a bit of an anomaly there. As in most all other things, he is apparently "Matchless"! His transplant, I think, was a Haplo, with his son as a donor.

    Anyway, my match was a 9/10 unrelated donor....a 28 yr old kid from somewhere in the Midwest. So far, so good. You previously asked me about my transplants. my first was an auto SCT, using my own cells, after some scorched earth chemo. that was in 2012, at Huntsman. I relapsed 2 1/2 yrs later, and had my allo in Feb. 2176. I've had very few issues with any of it since, and am feeling quite good all in all. I am 67 yrs old.

    I am not sure where you live, but somehow I have the impression maybe Western Colo? Like maybe Grand Junction? If so, you should know that you will be spending 3 to 4 weeks in the Hospital , followed by about 3 months close by in SLC, so you are nearby for appointments, etc. I live in Casper, Wyoming, or about 6 hours away from SLC. I STAYED AT THE university OF Utah's Patient and Family Housing facility. It is a very friendly and caring place, and they can work out accommodations for transplant folks and caregivers too. Anyway, again, if you have questions about SLC or Huntsman/University of Utah, let me know. Just in case, my email addy is [email protected]. Feel free to email me any time also. I don't check in here as often as I should.

    Best of luck

    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  3. #13
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    As to radiation, your body has absorbed more from the sun than you will receive pre-transplant. I'll grant you that it was somewhat more spread out, time-wise. Although it is in the "crude but effective" category, TBI is the only way to reach all of the marrow in all of your bones. The point being to kill the marrow, as well as all of the CMML cells, so as to give your new immune system a fighting chance.

    Transplant is a dangerous time. Consider: you have a very mature, very adult cancer in your bones. It has a lot of experience in fighting and defeating chemotherapy. A transplanted immune system is essentially a baby. It has to grow and learn. It cannot fight an adult cancer, so it needs some help.

    Conditioning chemo is one way, but there is no guarantee that it will reach all of the CMML cells, or that it will kill the which it reaches. Transplant, for me, was a "bridge of sighs" in that there is no going back. Yet, who wants to go back when there is a fire raging behind you?


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