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Thread: One haploidentical transplant experience (ongoing)

  1. #891
    Senior User
    Join Date
    Jan 2015
    I'm so sorry to hear you are not feeling well at all. I still wanted to wish you a Happy Father's Day - I'm sure you are a great father! I know for certain you are a good fighter! Fight on.

  2. #892
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013

    Hoping you are feeling better if only slightly but preferably much.


  3. #893
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Turns out that I have parainfluenza virus type 3 (HPIV-3). Another to add to my roster. Types 1 & 2 cause croup, so I dodged a bullet there. It seems to be clearing up, but I am still surrounded by trees.

  4. #894
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Well mate,
    At least you know what you have or a element of the long list.
    Good you are responding.
    Wood for trees syndrome, never nice position to be in, yet there are always ways out of this conundrum.
    Chain saw, axe or more tablets.
    Doesn't matter really does it, so long as you are going forward in the right direction.
    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.
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  5. #895
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    TY, all! DW is threatening to drag me to the local urgent care clinic once again if I do not improve from my current state. Simply put, colds and viruses last about 30 days, given my current level of immune suppression. As inconvenient as this may be, it is down from 2-2 1/2 months just a few years ago.

  6. #896
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Am feeling better, but was swabbed again today (Friday) for the presence of HPIV. Dr. palpated several submandibular nodes at about 1cm, but it concerned neither of us, since I am still in recovery from the virus. We agreed to begin the prednisone taper once again, since skin GvHD seems very well controlled by the ruxolitinib. Next up, lung function tests (oh, boy!) and a visit with the long-term follow-up crew on July 5th.

    EDIT: Called the UW hospital and had them access my records. Still + for HPIV-3. So, the hermit's life continues.
    Last edited by po18guy; 06-30-2019 at 06:14 AM.

  7. #897
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    No more swabs, as my symptoms have now subsided sufficiently for concern to decrease. As well, after putting me through the motions, poking, probing, photographing and scrutinizing my blood numbers, the decision is that I need not report back to long-term follow-up until next year at this time. I will still be under the care of my hematologist, but for more routine issues.

  8. #898
    Moderator Top User
    Join Date
    Mar 2010
    Yearly visits sounds like a positive move, so lets hope the routine issues remain as such and a sense of calm prevails

    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.

  9. #899
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    John, thank you for the well wishes. I appear to have the remainder of the month without a medical appointment. Odd, that bit. Nevertheless, we are holding our own. Having said that, I bear always in mind those were the last known words of Captain Ernest McSorley of the ill-fated Edmund Fitzgerald...

  10. #900
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Glad to hear you are feeling better Po and hoping with each passing day, you will improve even more to get out and about and not be so confined to the "hermit's life".


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