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Thread: One haploidentical transplant experience (ongoing)

  1. #761
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by sacha39 View Post
    Hi po,

    I don't really understand what is happening but if someone can face this and beat it, it's you. Sending positive thoughts out of my anxiety ridden brain.

    Best,

    Marie
    Marie, my current status is "In between cancers" if you can accept that.

    Fear this!

  2. #762
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    Quote Originally Posted by po18guy View Post
    Marie, my current status is "In between cancers" if you can accept that.

    Fear this!
    Hi again po,

    What are the Interleukin thing and the damaged port? I don't really know much about all that,

    Have a great day,

    Marie

  3. #763
    Super Moderator Top User po18guy's Avatar
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    Well, my "vortex" port is designed with a lifespan of 200 sticks, or needle accesses. It seems that we are reaching the limit, as both the RN and I noted a distinctly unusual "access" about one month ago. There is a membrane inside the port, which allows the needle to pass and then self-seals when the needle is withdrawn. On that day, the needle pushed through with an odd sensation and little resistance. This is the first sign that the port is reaching the end of its life.

    We are also at somewhat of a crossroads as far as the ECP treatment I am receiving. I am 15 months into a 24 month max therapy, and its benefits are being weighed. We cannot seem to drop beneath 25/5 milligrams (alternating days) of prednisone to control the GvHD, so we are exploring other possibilities. One choice is treatment with the approved drug Ibrutinib, but that has potentially quite a few undesirable side-effects, especially considering my co-morbidities.

    As to the Interleukin2, it is in clinical trial for chronic GvHD, but I may not qualify, due to too many prior clinical trials. Doctor is checking on that. Interleukin2 itself is a cytokine, or a protein that is naturally expressed on some cell surfaces. It controls/moderates T-Cell activity, and it is the T-Cells that are the bane of my existence. ECP is intended to moderate the effects of T-Cells, so that they will not so aggressively attack the host (my) body.

    The clinical trial I am in currently (KD025) is a completely different type of drug, but has the same intent. Somewhat wistfully, neither ECP nor KD025, either alone or in combination, are as effective as hoped for. So, we essentially open the window and have a look see for other possibilities.

    As my hematologist states, "If we knew what we were doing, it wouldn't be called research."

  4. #764
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    Wow!!! You seem to always have the right thing to say to me and others. I am fumbling at the moment to return that favor. I think I am failing at it though. You have a gift of putting the words out there to be understood. How selfishly grateful I am you are here. Sending all my best vibes your way.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  5. #765
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    Quote Originally Posted by po18guy View Post
    Well, my "vortex" port is designed with a lifespan of 200 sticks, or needle accesses. It seems that we are reaching the limit, as both the RN and I noted a distinctly unusual "access" about one month ago. There is a membrane inside the port, which allows the needle to pass and then self-seals when the needle is withdrawn. On that day, the needle pushed through with an odd sensation and little resistance. This is the first sign that the port is reaching the end of its life.

    We are also at somewhat of a crossroads as far as the ECP treatment I am receiving. I am 15 months into a 24 month max therapy, and its benefits are being weighed. We cannot seem to drop beneath 25/5 milligrams (alternating days) of prednisone to control the GvHD, so we are exploring other possibilities. One choice is treatment with the approved drug Ibrutinib, but that has potentially quite a few undesirable side-effects, especially considering my co-morbidities.

    As to the Interleukin2, it is in clinical trial for chronic GvHD, but I may not qualify, due to too many prior clinical trials. Doctor is checking on that. Interleukin2 itself is a cytokine, or a protein that is naturally expressed on some cell surfaces. It controls/moderates T-Cell activity, and it is the T-Cells that are the bane of my existence. ECP is intended to moderate the effects of T-Cells, so that they will not so aggressively attack the host (my) body.

    The clinical trial I am in currently (KD025) is a completely different type of drug, but has the same intent. Somewhat wistfully, neither ECP nor KD025, either alone or in combination, are as effective as hoped for. So, we essentially open the window and have a look see for other possibilities.

    As my hematologist states, "If we knew what we were doing, it wouldn't be called research."


    Well, If I understand this well, nothing here is deadly: a pain in the butt, but aren't we used to that by now. Hang on, this too shall pass. You'll face this as you usually do: like a champ!

    Sending positive thoughts and prayers,

    Marie

 

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