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Thread: One haploidentical transplant experience (ongoing)

  1. #881
    Hey PO!

    Just checking in myself to see how all is around here. Hoping you get to the bottom of the symptoms you are exploring. Am hoping it is not GVHD morphing....that stuff sucks. I have a friend in Ky. who is 2 yrs + post transplant, with really awful GVHD in her colon and tummy and is having to do the ECP thing. The treatment plus the diet plus having to stay out of sunlight is making her crazy. Made me remember your experiences. Ugh.

    Anyway, hope we're getting better and getting ready to enjoy an amazing Western Washington Summer. Hang in there....cheering hard from the cheap seats.

    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.

  2. #882
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Thank you, David! Just plugging along. Trying to find a dose of Ruxolitinib that will effectively control the GvHD while killing me at an acceptable rate. OK, maybe a slight exaggeration, but not all that far off the mark. Changing out brakes and shifters/cables on my MTB, so a bit of fiddly work before I begin the cardio once again. I trust that all is well at your end. Did you retire? I forget.

  3. #883
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    As always, here's hoping you (or they) can get the dosing so that it yields maximum benefit at minimal physical cost. Is that an MGB you are recabling? That would be a fun job, they are so simple, really...enjoy!

    Good health,


  4. #884
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Thank you, Richard. It appears that I need dosing which is not currently offered by the manufacturer. So we must settle on a two-day average dose, even though the drug seems to act for about a 10-12 hour period. 20mg daily (10+10) was killing my marrow. 5+5 is only barely controlling the GvHD. What I need is 7.5mg twice daily, but no such luck. I began at 10mg during the day, but fatigue became a major issue. So, today I am modifying it to 5mg during the day and 10mg at night.

    I see that side effects of at least one inhibitor class drug are moderated by taking it at bedtime. So, I am hoping that the 10 at night and 5 during the day will prove to be a workable compromise.

    At to the bike, it is a Motobecane dual-suspension mountain bike. The project has expanded from new cables to replacing the cable disc brake calipers with Shimano hydraulic, and the trigger shifters with grip shifters, if that makes snese. This was much easier before dual neuropathy set in, but I'll get it done.

  5. #885
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Patience, perseverance and commitment Po, just love it.
    that'll keep you occupied.
    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.

  6. #886
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Everything was going along halfway decent. Therefore, I had to develop a couple of infections. Worst is pneumonia in the left lower lobe - the usual suspect. However, the same (or another) infection is plaguing my ears, causing vertigo. Low grade fever (100/38c) So, three doctor visits later, I am wearing a scopolamine patch behind my ear, and am sleeping on guaifenisin/codeine. Doctor is concerned as this is the second semi-major infection this year. Nasal swab dne in an attempt to identify the culprit(s).

  7. #887
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Jim, so sorry to hear of this development. Infections are the one thing that scares me on this journey - get em anywhere and don't know they are there til they decide to show you they are there. Good luck with getting a handle on them and here's hoping the docs can use a good antibacterial to knock them out!

    Good health,


  8. #888
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Sorry to read this Po. My thoughts are with you that they can get to the bottom of this and get you back feeling better soon.


  9. #889
    Senior User
    Join Date
    Dec 2012
    Hello PO,

    Man, you seem to have a target on your back, so to speak. I worry about the ear infection as it can also cause deftness if in the inter-ear. I do wish you well, and wellness!!

    Ta Da...My son has mostly transitioned from mountain bikes to road bikes after having lots of pins in his ankle(s) and, thanks to Big Bear, a screwed up shoulder. Your mountaineer is a nice one and Im sure the mods will make it easier to handle. SO, bike on!!
    (I should add.....West Virginia Cannan Valley just LOVES you "rock hoppers").

    See you at SCCA, zim

  10. #890
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Thanks, all! I must eay that I feel substantially worse than when I was in the hospital - but that was infections+anemia. Will simply have to wait this one out. As to my mountain bike, I ride essentially all pavement on it. Road bikes were out, as my back requires rear suspension.


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