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Thread: One haploidentical transplant experience (ongoing)

  1. #791
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    Po, you have nearly come close to out doing Baz - when the cogs stop turning it does push life to the edge - and we Brits thought hospital pharmacists were bad, they have been out done.

    hope things settle for you now
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  2. #792
    Super Moderator Top User po18guy's Avatar
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    Thanks, all! The problem is that all other drugs have been covered at the cancer center pharmacy - the only delay being the insurance approval. Even after approval came, it is a new ($$$/) drug, so the stipulation was that we use the insurance company preferred pharmacy, which will halt the earth's rotation if it saves five quid. It was then that all of the monkey motion began. DW says that it took this long only because she was pushy and abrasive in the multitude of calls she made. But for them, it might have taken another week or two. When the inevitable cost-containment enters in, the wheels grind even more slowly.

    First dose this AM - we will soon see. Also, I am under the care of a follow-up hematologist as well as the transplant Long-Term Follow Up team, so a bit of cross-talk must occur between those two floors in the same building. My original hematologist is a "%^&$ the torpedoes, full speed ahead!" type, and this might not have occurred to such a degree with him. But, after hearing of the minefield laid in the path by CVS, I am now forewarned.

    I know that private insurers did not begin their operations at the government's usual snail's pace, but apparently they are a rather quick study. I'm covered publicly by MediCare, but they are secondary to private insurance. It would be interesting to compare and contrast the two. I doubt I shall live that long.
    Last edited by po18guy; 11-11-2018 at 10:16 PM.

  3. #793
    Super Moderator Top User po18guy's Avatar
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    Baz, here is the Wiki on 'Pogo', who was a standard feature in the daily and Sunday US newspapers for decades.

    https://en.wikipedia.org/wiki/Pogo_(comic_strip)

  4. #794
    Super Moderator Top User Baz10's Avatar
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    po, had a quick gander at the Wiki Pogo link,
    “primeval forest” indeed and the old adage
    “Cant see wood for trees” springs to mind which just about summarises your recent insurance /pharmacy fiasco.

    Mind you, my very recent experience of hospital A&E with renal colic (kidney stones” for the uninitiated “ was nothing short or admirable and I walked out with antibiotics, Flomax and some rectal torpedoes (Painkillers) all delivered to bedside in A&E before the cannula came out.
    Slick I dare to suggest.
    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.

  5. #795
    Super Moderator Top User po18guy's Avatar
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    In my experience, from time to time, despite their best efforts, things go well.

  6. #796
    Super Moderator Top User Baz10's Avatar
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    Amen to this mate.
    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.

  7. #797
    Senior User
    Join Date
    Jan 2015
    Posts
    229
    Wishing you the best response to this latest drug - after all it took to get it, it better work!! As usual, I follow your GvHD thread to see if it can help my brother at some point. He thought he was doing better, but then it was clear the GvHD had it's own plan, so the steroids have been bumped back up. So far they are keeping it under control at this new level.

  8. #798
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Thank you, deb! I became quite wary of tapering the pred, as each time we tried, the GvHD would flare. At 25/5, we have reached the lower limit. This latest drug is now the 6th strategy to control it. I could say something, but do not want to jinx the situation. We will know shortly, and I have weekly blood draws to check my numbers, as Jakafi can raise havoc with the blood - and my default is anemia and chronically low hematocrit. From the Jakafi website:

    Common side effects of Jakafi include:

    Some side effects of Jakafi may be similar to the symptoms of myelofibrosis. Tell your doctor if you have serious side effects of Jakafi including:

    • pale skin,
    • lightheadedness,
    • shortness of breath,
    • rapid heart rate,
    • trouble concentrating,
    • easy bruising,
    • unusual bleeding (nose, mouth, vagina, or rectum),
    • purple or red pinpoint spots under your skin,
    • fever,
    • chills,
    • body aches,
    • flu symptoms,
    • vomiting,
    • sores in your mouth and throat,
    • pain or burning when you urinate, or
    • blisters or painful skin rash.
    My marrow was checked for myelofibrosis, as my symptoms were consistent with it. That is a fourth cancer which I definitely do not need. Fortunately, no evidence of it was found. Of one thing I am certain: succeeding generations will have it much easier than your brother and I. Still, I have two other drugs to try and in the coming months, perhaps another clinical trial if needed - and if I even qualify after the trials I have been in.

 

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