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Thread: One haploidentical transplant experience (ongoing)

  1. #851
    Super Moderator Top User po18guy's Avatar
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    Thanks Zorro and Richard. Am on fire watch today, as another fever has broken out. Too late for a transfusion reaction so it appears to be the as-yet unidentified virus, or perhaps an additional one, as symptoms are changing.

    Richard, you would receive an auto transplant, yes? Those are easier - no GvHD, not that this has been a problem for me. Mine is actually quite mild as some are confined to wheelchairs on oxygen. Puts it in perspective.

  2. #852
    Administrator Top User Kermica's Avatar
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    Jim, yes, I am scheduled for an Auto transplant. The process certainly seems daunting but not as challenging as an allo, by any measure. Here's hoping that fever calms down for you soon.

  3. #853
    Super Moderator Top User po18guy's Avatar
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    Good. GvHD is far far better avoided, as they are still quite early on the learning curve in controlling it. Well, another 8 hours in the ER last evening into this morning with more diagnostics and the world's largest known viral blood panel being sent in. The pneumonia seems to have almost completely resolved. Body temp is fluctuating from 95.7 to 101.5 which does not seem to be caused by any sort of infection. My heavily tortured immune system is just having a hissy fit. Overall a good sign, even if the road is painful and seemingly all uphill.

  4. #854
    Super Moderator Top User po18guy's Avatar
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    As expected, my case continues to be a medical enigma. So far, no pathogens have been found. What was seen in my lungs is being debated between the infectious disease and pulmonary specialists. I am one of the quickest on Jakafi to have my red cell production tank. My blood is generally falling in numbers, so occasional transfusions may be needed.

    The curious thing is hat only a very minor amount of itching has returned after discontinuing the drug. My symptoms still indicate the presence of some sort of viral agent, but none has been isolated. Another chest X-ray to monitor the nodules in my lungs. The red, bumpy rash on my upper arms and back have disappeared for the time being.

    Body temperature still varies from hypothermic to low grade fever, with little or no explanation. Depending on my blood results in a week, a bone marrow biopsy will be performed, in a search for Myelodysplasia (which has been up to 26% of my marrow) or Myelofibrosis. As with all searches for unknown illness, time will tell.

  5. #855
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    Po, so sorry to hear that the mystery continues! But I am SO happy to hear that the itching is not bad and the rash is disappearing - I know that is huge for you. Whatever "this" is, you can beat it like you have done so many times in the past. You have a strong will and intelligence on your side!

  6. #856
    Super Moderator Top User po18guy's Avatar
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    Thanks again, Deb. At this point, we are smply trying to identify what is active in my blood. I understand that it may remain a mystery. I have had two discernible viruses this year and this may be a third, or something else entirely. The good news is that I am starting to lose my pred-belly and facial fat. Got really tired of that. A lack of appetite helps in that regard., but hey, it's Lent!

    More blood work this Tursday and more guessing, unless one of the blood panels has revealed something.

  7. #857
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    Hi Po - just checking in to see how you are faring. I hope all is well - I get nervous when I don't see updates from you!

  8. #858
    Super Moderator Top User po18guy's Avatar
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    It has not been a banner year, but I am still here. Still in diagnostics and probably staring at a bone marrow biopsy.

  9. #859
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    Ok - one day at a time, right? Just know that I'm thinking about you and hoping for the best.

  10. #860
    Quote Originally Posted by po18guy View Post
    It has not been a banner year, but I am still here. Still in diagnostics and probably staring at a bone marrow biopsy.
    PO,

    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. Anyway, hope they get to the bottom of this.....sounds like your 2019 needs to get on a more sensible track so you can get out and ride the unit some in the nice weather. Thinking about you and cheering hard for you, Pal.

    David
    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.

 

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