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Thread: One haploidentical transplant experience (ongoing)

  1. #501
    Super Moderator Top User po18guy's Avatar
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    From a low of 27, and a minimum of 28 for treatment, my hematocrit was 30 as of Wednesday. So, we forged ahead with treatment. I took my hearing protectors along in case of centrifuge mayhem. That got a chuckle from my doctor and the Apheresis staff, but no such protective measure was needed. 12 liters of blood was processed, but that amounts to only about 8-10% of T-Lymphocytes, so numerous treatments are needed to ensure that the majority of lymphocytes are processed.

  2. #502
    Senior User Chef's Avatar
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    That must have been quite the shocking situation! Sounds like a scene straight out of a horror movie! I had a good wtf moment reading that post (I'm sure you must have too lol...wow), all kidding aside, I'm glad you're ok and able to push on with continued "successful" treatments. I had no idea they process so much blood and it only yields 10% results. That's huge for so little to me? Better than the alternative as always! Take care sir, stay well and quit breaking the gear lol. (Who! moment).

    Dx ~ NSHL StageIIIA
    CT ~ {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen ~ 02/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests ~ Good.
    Pet scan ~ Worrisome bone marrow ~ 03/17/16
    ABVD ~ 6 cycles started ~ 03/31/16
    Interm Pet ~ (+) ~ 05/19/16
    Stop ABVD ~ 09/01/16
    Pet (+) ~ 10/04/16
    Salvage GDP ~ 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B ~ 12/01/16
    Adcentris ~ 12/05/16 ~ 03/07/17
    Lumbar, Tri-fusion line,G-CSF, Collection ~ 03/17/17 ~ 03/18/17
    Sent home from transplant ward with infections ~ 03/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 ~ 04/26/17
    Restart Adcentris ~ 05/18/17
    Transplant TBD

    "Knowledge speaks, Wisdom listens." ~ Hendrix

  3. #503
    Senior User Kimv's Avatar
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    Dec 2015
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    Chico, ca
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    Dear Po and Chef,
    I was wondering if you have experienced any strange sensations "tweeking" in your lymph nodes since your transplant. Also, have either of you had issues with your stomach similar to IBS? I know that I'm lucky to have that as my only issues. I had another PET because of these issues and it was negative. I see a gastroenterologist in October.
    As always, I appreciate your expertise in this journey. Po I hope you get your hematocrit back up soon...that's scary stuff! Sending good thoughts your way. x0x0x0 kim
    Oct. 27, 2015 diagnosed with angioimmunoblastic T cell lymphoma.
    December 2016 began choep chemotherapy-6 treatments 21 days apart.
    February 24 scan showed no evidence of disease!
    Continue choep chemotherapy treatments.
    APril 2016 returned to Stanford for high dose Cytoxan, removal of port, and insertion of Hicckman catheter.
    Neupogen injections daily to increase white blood cell counts.
    MAy 5, 2016 Apherisis.
    MAy 21, 2016 HIgh dose chemotherapy VP 16.
    MAy 24, 2016 High dose chemotherapy Cytoxan.
    MAy 26, 2016 Autologous Stem cell transplant.
    JUly 27, 2016 Scan shows no evidence of disease. Still In remission!
    October 31, 2016 Scan shows no evidence of disease...NED again!
    April 1, 2017 Still NED!

    love strong....live long❤️💜💚💛💙

  4. #504
    Super Moderator Top User po18guy's Avatar
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    Thank you, Kim. With transplant, each of us will have a few common side effects, but then there are the particular or individual effects. Those can be as unique as our donors are. Fortunately, my immune system is pretty much leaving my digestive tract alone. I do have some reflux, but that is controlled and may be a result of the various chemo drugs - no one knows. I do know that the tract is somewhat more fragile than before, and less tolerant of certain foods, but it is all within reason. I am thankful that it is functioning, actually more regularly than before, if you can imagine that.

    As to your nodes, that is quite distinctive. I have not experienced any such symptom although I can understand why it would be alarming. Yet, if you did not have this sensation before, during or immediately after treatment, it should not be quite as worrying, right? It may simply be the new immune system 'adjusting' to its new residence. In any event, I think it is good at times to have the doctors scratching their heads, as they must then think outside the box.

    Let us know what, if anything, if found out.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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 TREC (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.
    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 measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow aspiration/biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

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

  5. #505
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Location
    Pacific NW, USA
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    In my ever advancing klutziness, I lacerated the back of my right hand. With prednisone-thinned skin that now measures in microns, I have done this countless times as I putter about in my garage. That's life. But, the hand began to puff up and become tender. So, off we went for blood work and an exam. There have been some concerns about both my chronic kidney disease as well as the state of my bone marrow. Being diagnosed in 2015 with a marrow cancer (MDS), I must admit this was a bit of an eyebrow raiser.

    So, it was also a comfort to hear that my hematocrit was up/steady at 30, and my creatinine was down to 1.39. Hematocrit had been as low as 27 (the numbers are meaningless outside of the lab) and creatinine above 1.5. So, my kidneys are maintaining, possibly improving and my marrow is also producing - it is just suppressed by the prednisone. So, a short course of antibiotics and life resumes.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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 TREC (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.
    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 measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow aspiration/biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

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

  6. #506
    Moderator Top User jorola's Avatar
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    May 2014
    Location
    Alberta
    Posts
    1,256
    And maybe some bubble wrap - inside and out?
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

  7. #507
    Administrator Top User Kermica's Avatar
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    Jul 2009
    Location
    New York
    Posts
    6,039
    its good to hear that the systems are working, poguy. My DW is all over me every time I get a little cut. I suppose she is right, though, bad things can get at us that way and caution is the right course.

    Good health,

    kermica

  8. #508
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
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    Warm weather is here and so is the itch. Not as bad as last year, but I still have to deal with it. My hematologist's nurse/practitioner also thought that they should simply give me another off-label infusion of Ofatumumab to control it, but this time without the steroid boost. That might throw a wrench in the gears of the clinical trial, but there are sufficient patients in it to collect some useful data in any event. The only concern would be that it might deplete too many of my B Cells, or for too long. I shall surely ask my ECP hematologist (very good, but not as aggressive as my primary) about this, although it is still a little too early to expect the full effect of the ECP to be realized. Kinda wish we had started sooner...
    Last edited by po18guy; 07-18-2017 at 04:03 AM.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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 TREC (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.
    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 measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow aspiration/biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

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

  9. #509
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Location
    UK
    Posts
    4,681
    po mate, sounds more than familiar, every single time I trim our hedges I get cuts and extensive bruising.
    A thorough wash using hand wash and on the deeper cuts a anti bacterial cream and I'm good to go.
    Unsightly most definately.
    DW keeps pressing me to use long sleeved gloves or long sleeves or pay someone to do it for us.
    No thanks, I'll suffer the minor abrasions as I'm a potterer in the garden.
    Bubble wrap that sounds a good idea.
    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.
    Prostate Cancer confirmed Gleason 3+4.
    Active surveillance ceased and intervention recommended.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 07/09 to be done.
    Just a little recurrence and another 20 cm of colon vanished under the knife.

    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. #510
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,820

    Made the two year mark

    As I was being prepared for ECP this afternoon, doctor made a visit and reminded me that this was the two year anniversary of my transplant. And, so it was! Also just over two years in remission from Peripheral T-Cell Lymphoma - Not Otherwise Specified (NOS - dontcha' love that?) and Angioimmunoblastic T-Cell Lymphoma (I like how that rolls off the tongue). In a slight reversal of fortune, my hematocrit was down slightly while my creatinine was up from last week. Both seem to bounce around within a narrow, if less than optimum range, but that is OK with doctor. So, ECP treatment as planned. Chronic Graft-versus-Host-Disease was ruled stable, so alright on that front.

    Due to various blood factors being slightly askew, it is suspected that the MyeloDysplastic Syndrome (MDS) might be in play, so a bone marrow aspiration will be announced with the week or so for pathological examination. I got to choose the specialist - my hematologist's nurse/practitioner, who performed the best marrow aspiration I ever had. The funny thing about MDS is that, up to 19% blast cells in the marrow, it is considered to be MDS. Hit that arbitrary 20% mark, and it is Acute Myeloid Leukemia. I must admit that last bit was not terribly comforting. There is no clear evidence that this is actually the case, although it is a common problem as we age - the marrow essentially showing signs of simply wearing out.

    None of this affects today, which was sunny and clear - about 80F. Essentially a day in which I was delighted to be anywhere.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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 TREC (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.
    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 measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow aspiration/biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and a myeloid malignancy lend a certain symmetry to the journey.

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

 

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