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Thread: One haploidentical transplant experience (ongoing)

  1. #691
    Super Moderator Top User po18guy's Avatar
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    Thanks, you two. GvHD is the "cost of living" free of lymphoma. As refractory and relapsed as my two variations were, probably nothing else could eliminate or even contain them.

    Received a call from the nurse-practitioner regarding the study drug. After contacting the pharmaceutical company, it is OK for me to re-start, but at half dosing/200 mg daily. We will then see how that goes. In any event, this is an early trial, stage 2A dose escalation - using the ancient FDA protocol of determining just how much of the drug the human body can tolerate.

    My hematologist has a saying that is not popular with many of his cohorts, but remains nevertheless true:

    "If we knew what we were doing, it wouldn't be called research."
    I love that man!

  2. #692
    Senior User Chef's Avatar
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    So true, lol...
    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

    “In the middle of difficulty lies opportunity."

  3. #693
    Super Moderator Top User po18guy's Avatar
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    I waited (and the center held a spot for me) for a year for this current trial. First, it was dual viruses in early 2017, then a certain incident of motoring mayhem, then it was the discovery that the MDS had rebounded to a measurable extent in my marrow, disqualifying me as an active cancer. Turned the new immune system loose a bit more as 2017 progressed (read: more GvHD) and miraculously the MDS was gone by December, 2017. No treatment required. As my son continually reminds: "Do not underestimate my immune system." Fair enough.

    Still, I began 2018 with my traditional dueling viruses. So when all is clear I get into the trial, only to have the GvHD suddenly flare for some reason and a level of fatigue that kept me on the sofa. After all of that, I was ready to drop out! Cooler heads prevailed and I stopped the drug for 10 days. Re-started at half dose (200mg daily) and, wonder of wonders, GvHD is definitely improved. Fatigue is still sorta meh, but I have Rockstars and Monsters to drink. No Red Bull - reminds me too much of Doxorubicin.

  4. #694
    Super Moderator Top User Baz10's Avatar
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    Hmmm po,
    but still you are alive and kicking so to speak, whether it be a sitting or standing kick.
    The good news is on half dose there is a improvement.
    No idea what Rockstars and Monster drinks are.
    I’ll stick with Fosters as red wine as well as cheese of any type and tuna etc are verboten due To extreme reaction to the meds.
    Interesting the data sheet does explicitly say
    Inder no circumstances should the above etc be consumed.
    ”If accidentally eaten go to the nearest A&E facility, do not wait to call your doctor or pharmacist”.
    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.

  5. #695
    Super Moderator Top User po18guy's Avatar
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    conundrum |kəˈnʌndrəm|
    noun (pl.conundrums)
    a confusing and difficult problem or question: one of the most difficult conundrums for the experts.
    • a question asked for amusement, typically one with a pun in its answer; a riddle.
    GvHD can flare, erasing all or much of the progress made against it, if there is an immune response to pathogens, allergens or even sunburn. My donor son has innumerable allergies to food and medications, which presumably I now share with him. I cannot be tested for allergies, as I am immune suppressed due to, once again, GvHD.

    catch-22 |katʃtwɛntiˈtuː|
    noun
    a dilemma or difficult circumstance from which there is no escape because of mutually conflicting or dependent conditions: [ as modifier ] : a catch-22 situation.
    Such is life of the chimera, the external bearing witness to the internal war being waged at the cellular level.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  6. #696
    Super Moderator Top User po18guy's Avatar
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    During ECP yesterday, doctor paid a visit. Lungs are fine - GvHD seems to gravitate toward the lungs of many. So far, I have been spared. We continue on the roller coaster dosing of prednisone, 27.5mg one day and 5mg the next. Two schools of thought, one being that the constant rise and fall of cortisone in the system keeps the adrenal glands in a semi-active state. A consistent dose might put them to sleep - a sleep from which they "should" awaken, according to specialists. If they do not awaken, then Adrenal Insufficiency is yet another likely fatal condition to add to the list. It's not on my bucket list and I passed my last cort-stim test, showing that the adrenals are still capable of awakening.

    On the GvHD front, I continue to notice a lessening of skin manifestations. Hot showers now cause more burn than itch - a good sign I am assured. But, chase the dreaded T-Cells away from one geographical area and you fight them in another. Today it is my shoulders. Good, actually, since I can reach them to apply topical steroids and skin lotion. The change in life that this entire journey has brought about is a sometimes humorous marvel. Back in the day, I used to physically battle with crazed meth-heads, sometimes having to beat them down and drag them off to custody, both of us bleeding and carrying the scars of combat. Now? I must pay attention to moisturizing.

  7. #697
    Super Moderator Top User Baz10's Avatar
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    Trying to add a little humour to a serious situation po.

    Now you have to put “cuffs” on your own thought processes, somewhat of a conundrum I’d say for you.

    For me the all body itch has somewhat lessened thanks to increased dosage of anti histamines. Yet, I found that one particular natural shower gel that contained a mint extract magnified the all body itch to new dimensions.
    to be told, I shouldn’t use any shower gel that contains alovera and or mint extract.
    Somewhat late advice. Never the less the itch that can’t be scratched has lessened and long may it remain so.
    two weeks ago I would have needed cuffs to stop me scratching.
    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.

  8. #698
    Super Moderator Top User po18guy's Avatar
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    Well my friend, overall, there seems to be a fair-to-middling good response since I stopped and re-started the trial drug. No explanation known for 200mg being more efficacious than 400. As to moisturizing, I have entered the genteel age of retirement. I formerly "moisturized" offenders' faces with oleoresin capsicum, aka pepper spray. Of course, it got on both of us, but I learned to put up with it. I was not a fighter - I was a fight stopper, and the Marquess of Queensberry rules were temporarily suspended.

  9. #699
    Super Moderator Top User Baz10's Avatar
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    Quite so po.
    As a ex cop this may amuse you.
    A friend of more than 40 years Dave B (name withheld for obvious reasons was a copper in Durham Constabulary he then went into CID, during his tenure rose to the rank of DI and then transferred into Special Branch , I With 2 other friends were part of the positive vetting investigation as to his suitability assessment for joining the SB.
    They were to raid a target “criminal” who lived in a large detached house in a small village in Durham County.
    For weeks the target had been under surveillance.
    due to this persons history of firearms it was to be a armed raid.
    Dave B being a firearms officer was part of the lead entry team.
    So, at 4AM they smashed in the front and back doors, belted up the stairs to the bedrooms entering and with hand guns covering the two people in the main bedroom pulled the covers off.
    Big problem, the couple were in their 70’s both cringing in bed.
    Wrong house.
    What followed I don’t know.
    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.

  10. #700
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,477
    Wrong house.
    Well, that, my friend, would certainly constitute a bad day for everyone involved!

    k

 

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