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Thread: Poll/Questions for all those who have been through allo transplant

  1. #1
    Senior User
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    Poll/Questions for all those who have been through allo transplant

    Greetings to all,

    Just trying to gather info for Plan B. If you've been through an allo:
    1) What type of donor?
    2) Did you have a RIC-allo? What was your conditioning chemo? Particulary wanting to know if you had TBI (total body irridation-radiation) as part of the conditiong chemo before allo.
    3) If it's not included in your signature, did you deal with acute GVHD? Chronic GVHD?
    4) How long actually in the hospital?
    5) How many months before you went back to work, school or etc.?

    Thank you, thank you!
    Last edited by VMarie; 04-29-2018 at 11:29 PM.
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  2. #2
    Senior User Chef's Avatar
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    Hi VMarie - Polls are fine and all but you must remember no two transplants are the same! I know, it's scary! To answer some of your ?'s...

    1. Unrelated 10/10
    2. High dose Methtrexate (including spine), Cyclophosphamide, TBI (twice daily for 3 days @ 20 min per side).
    3. Nothing officially to date but notice things here and there, I dunno.
    4. 5 weeks (then daily blood work for the 1st. month, then every other day for the next 2 months, then one a week since coming home).
    5. I'm at 8 months and just starting to feel well enough (strength and muscle), wise to even consider it. It takes a lot out of you, way more than expected.
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies {-}
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet {+} 5/19/16
    Stop ABVD 9/01/16
    Pet {+} 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to {ALCL ALK-} stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = {ALK-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    ďIn the middle of difficulty lies opportunity."

  3. #3
    Super Moderator Top User po18guy's Avatar
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    My story is pretty much an open book. I certainly survived, but every other aspect seems to have been designed by Murphy. General rule: the younger, the better.

  4. #4
    Quote Originally Posted by VMarie View Post
    Greetings to all,

    Just trying to gather info for Plan B. If you've been through an allo:
    1) What type of donor?
    2) Did you have a RIC-allo? What was your conditioning chemo? Particulary wanting to know if you had TBI (total body irridation-radiation) as part of the conditiong chemo before allo.
    3) If it's not included in your signature, did you deal with acute GVHD? Chronic GVHD?
    4) How long actually in the hospital?
    5) How many months before you went back to work, school or etc.?

    Thank you, thank you!
    VM;

    1. I had an unrelated 9/10 donor.
    2. Not sure what an RIC- allo is, so I cannot answer that. I am not sure exactly what my conditioning chemo was, but the last part was Mephalon, or however it is spelled.
    3. Some mInor acute GvHD, controlled with topical steroids on shoulders and arms. Very brief in duration.
    4. Was in the hospital for about 28 days.
    5. I worked remotely from my hospital room while in-patient, about 1/3 time. And the same while I was in my 100 day out-patient period. I went back to work full time at about 110 days.

    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.

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Reduced Intensity Conditioning, I think it means. That is what I had, being over 60 at the time. 5/10 match. Acute, then chronic GvHD. Will have that for life - however long that may be. 14 days in custody, er, I mean hospital. Nearly drove me crazy - some say it did. Approaching three years, still no "baby shots." Still lots of drugs as prophylaxis. Still fighting GvHD and several co-morbidities. Don't like it a bit. Do like breathing, however.

  6. #6
    PO,

    I spent the weekend in Denver at a symposium for transplant folks sponsored by the BMTinfonet.org folks. I was fascinated by all the conditions that SCTs are used for, most of which I hadn't heard of before. Quite a few folks had Haplo transplants, and many, like you unfortunately, also were having a hard time with gvhd. Notwithstanding that, tho, most of those folks were still very positive, much like you, and fighting the fight with good cheer and amazing attitudes. So if your ears were burning, it was because I mentioned you more than a few times as one of my personal heroes. Hope all is well in the great Northwest. Ready for Springtime in the Rockies here.

    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.

  7. #7
    Super Moderator Top User po18guy's Avatar
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    You are too kind. Glad you were able to attend in good health. The paradigm in haplos seems to be shifting as the sheer number of recipients increases. GvHD was not expected, but it seems that we patients are surprising the doctors in that regard. Yes, it is starting to be spring-like, even in the Seattle area. Having gotten the crashing part out of my system, my motorcycle is calling...

  8. #8
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    1) Brother 10/10 match
    2) I think I had RIC - though I didnít know that at the time.
    3) 5 days outpatient Fludarabine, 1 dose of Melphalan inpatient. No TBI.
    4) Acute GVHD upper GI Day 14, diagnosed by endoscopy and biopsy. Chronic GVHD from Day 130 to present skin, lips and eyes
    5) Stay in hospital 22 days. Stayed 15 minutes away from hospital with two visits a week for 100 days. I had to get chemo again after transplant so I donít think Iím representative but it probably took me about 18 months post transplant to recover.
    Hope this helps,
    Alison

 

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