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Thread: One haploidentical transplant experience (ongoing)

  1. #861
    Super Moderator Top User po18guy's Avatar
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    There are more physicians with quizzical expressions and scratching various body parts than I have witnessed in some time. The problem, you see, is that my motorcycle is still not road-worthy. As Dave Edmunds sang: "When I'm disconnected from the driving wheel, I'm only half the man I should be.."

    I won't give the title or the rest of the lyrics, for fear of further raising a certain British subject's hackles!

  2. #862
    Administrator Top User Kermica's Avatar
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    By now, bone marrow biopsies are old hat for you. Tho one would think that as many as you have had to endure, they couldn't just insert a permanent spigot of some kind, and save you some of the pain.
    Help me out, my friend. I have been under the impression that you have been NED for quite a while now. What is causing them to think BMB as a diagnostic tool at this point? I agree that they should be old hat by now (though the one I had three weeks ago was not old, brand new pain on the aspirant pull).

    Just curious (and a bit concerned).

    Good health,

    kermica

  3. #863
    Super Moderator Top User po18guy's Avatar
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    The concern is that, for some reason, my marrow might be failing. The Myelodysplastic Syndrome may not have been completely eradicated, or another marrow cancer, Myelofibrosis, is a possibility. I do not want either, but I do not get to choose. After an appointment tomorrow, we'll have a better idea if a marrow biopsy looms in the immediate future.

  4. #864
    Administrator Top User lisa1962's Avatar
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    My gosh Po, so much going on and a lot of head scratching. Hoping answers are found soon and not what you are thinking it is but some reasonable explanation that perhaps has been overlooked.

    It is amazing that throughout everything you always have that witty side which we have all come to enjoy so much.

    Hoping for the best tomorrow Po.

    Lisa

  5. #865
    Super Moderator Top User po18guy's Avatar
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    Call me NEO 2.0

    I either dodged yet another bullet, or more likely slipped and fell just in time. Marrow seems to have rebounded, as my hematocrit has climbed back up to my normal substandard level - a win. Mo more talk of a marrow biopsy, as it seems to be alive. As to what was wrong with me in recent times, it shall forever remain a mystery, even if a painful, costly mystery. So the plan is to take a diuretic for three days or so to ease the painful edema in both lower legs and ankles. After about two weeks, we will re-introduce Jakafi at 5mg daily and watch my blood closely.

    Research must be more fun from the physician's side.

  6. #866
    Administrator Top User Kermica's Avatar
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    Research must be more fun from the physician's side.
    Of this, I have no doubt at all.

    I am glad to hear that you have some improvement, POGuy. Good luck with the diuretic may it achieve the desired result. Nay the marrow doits assigned job without interruption!

    Good health,

    kermica

  7. #867
    Super Moderator Top User Baz10's Avatar
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    Po,
    pleased to hear the medical mystery (yourself) has notched up a point in your favour.
    No heckles raised from my side you mentioning the motorcycle, in fact I dedect a subtle stimulus as it remains on your to do list.
    Good idea as aspirations are in my book a darn good thing.
    wink, wink
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  8. #868
    Super Moderator Top User po18guy's Avatar
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    Jak2 take 2

    After more than a month off of the Jakafi, and increasing upper body itching, we have decided to re-start the drug, but at half dose. I suggested a bump, perhaps 20mg daily for three days, as is done with prednisone, but that proved to be unnecessary. 10mg daily (5 and 5) are controlling the itch rahter well. Unlike so many others, this is one drug whose effects are felt shortly after taking it. Like Benadryl stopping allergies, this drug soon slows the itch to a stop.

    The only difficulty is that it does not last 12 hours. A timed or sustained release form of the drug might be perfect - but I may be the only one to benefit. We are watching my blood numbers like a hawk, hoping to avoid another hospitalization. I am standing firm that I do not want to increase the prednisone.

  9. #869
    Administrator Top User Kermica's Avatar
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    Glad to hear that you are getting some relief, POGuy, I can agree completely about not upping prednisone.

    Things here are progressing pretty well so far. I am at Day-3 and will get reinfused on Thursday. We shall see what we shall see...

    Good health

    kermica

  10. #870
    Super Moderator Top User po18guy's Avatar
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    Thank you. Transplant is where our faith - in medicine, ourselves, providence - is tested. I knew that rough seas were ahead, but was at peace nevertheless.

 

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