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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
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    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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    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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    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
    214
    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.

  7. #807
    Super Moderator Top User po18guy's Avatar
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    Back on the Tac

    Time for a litle update. Last week had a follow up appointment. After the initial period of 10mg of Ruxolitinib daily (half dose out of concern for drug interaction) I was ramped up to 20mg daily. Also had a 24 hour virus that threw me for a loop. Fairly intense ileum pain, as it was with the lymphoma, but the onset was sudden rather than gradual. Chills > tremors, fever, nausea - then gone in 24 hours.

    The Ruxolitinib has been so effective that itching (pruritis) is 90-95% reduced. Imperceptible much of the time. My skin still does not look all that well, but the sclerosis is not increasing and joint flexibility remains. I was prescribed topical Tacrolimus for any problem areas. The good is that after being poked, pinched, prodded and photographed, it was decided that I need be seen only twice yearly.

    Oh, and we once again tempted the devil by initiating yet another predniisone taper. Who know? This time, it may actually work.

  8. #808
    Experienced User
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    63
    Does that mean you are all done with Ruxolitinib? That sounds awesome. I hope Prednisone taper goes well too...
    Aloha,
    Alison
    1/31/14 - Dx T cell lymphoma (ALCL ALK-neg CD30) 50+ nodes Stage IIIB
    4/15/2014 - 4 rounds of CHOP. PET scan clean but two new areas. 5th round of CHOP.
    5/15/2014 - New nodes in neck, fever returns, leave for City of Hope
    5/28/2014 - One round of ICE at City of Hope, admitted to hospital, high fever, nodes in lungs.
    6/15/2014 - 3 rounds of Brentuximab, prep for ALLO SCT.
    7/15/2014 - PET scan shows only one active area under port.
    8/7/2014 - ALLO SCT at City of Hope, brother 100% match
    10/7/2014 - Day 60 PET shows same node 1.5cm under port, everything else clean. Reduce immunosuppressants to get GVL effect.
    11/15/2014 - Day 100 PET shows same node is bigger, and there's a new one.
    11/18/2014 - Brentuximab again 5 rounds, return to Hawaii
    11/25/2014 - GVHD skin rash, back on steroids 30mg/day
    1/13/2014 - GVHD eyelids, back on steroids 30mg/day
    2/9/2015 - First clear PET NED
    2/9/2015 - Chronic GVHD, lips, skin, eyes - steroids 5mg/day
    9/31/2018 - Clear scan - NED

  9. #809
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Alison60 View Post
    Does that mean you are all done with Ruxolitinib? That sounds awesome. I hope Prednisone taper goes well too...
    Aloha,
    Alison
    Aloha! Actually, I will be on Ruxolitinib until it is no longer effective or something better comes along.

    Forgot to mention that Thursday, I go in to have my port removed. After 10 years, it will take some time getting used to not having a port.

  10. #810
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,299
    Po mate,
    A positive step getting shot of what i term detritus.
    Hopefully a key indicator for the future.
    Keep on, keeping on mate.
    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.

 

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