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Thread: One haploidentical transplant experience (ongoing)

  1. #801
    Super Moderator Top User Baz10's Avatar
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    May 2011
    Posts
    5,261
    Echo K’s remarks po.
    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.

  2. #802
    Experienced User
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    Jan 2015
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    62
    Thatís good news PO! I did a quick read up on Jakafi and it sounds very promising for GVHD. Once again you are leading the charge. May you be a model patient and sail through with all the benefits and none of the side effects.

  3. #803
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    9,861
    Thank you deb, baz, Kermica and Alison! At this point, I will venture only that the signs are positive. F/U appointment next week and we will see how the blood is doing.

  4. #804
    Senior User
    Join Date
    Oct 2013
    Posts
    207
    Checking in and hoping you are doing well with meds. It took me a moment to figure out F/U meant follow up appt. uhmmm, you don't want to know what I thought at first.
    All my best as always
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  5. #805
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by zorro View Post
    It took me a moment to figure out F/U meant follow up appt. uhmmm, you don't want to know what I thought at first.
    Honestly, there are times when you seem to be correct...

  6. #806
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Alison60 View Post
    Thatís good news PO! I did a quick read up on Jakafi and it sounds very promising for GVHD. Once again you are leading the charge. May you be a model patient and sail through with all the benefits and none of the side effects.
    Benefits I am receiving, and my blood numbers remain fine. Kidneys are stable and my liver is reportedly doing excellently.

    Fatigue. Chemo-level. But, I can deal with that, as it is the price I pay for relief from the most vexing of GvHD symptoms: pruritis. The fatigue may be due to doubling the dose after starting at half-dose.

 

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