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Thread: MDS & Bone Marrrow Transplant

  1. #1

    MDS & Bone Marrrow Transplant

    Hi All,

    I'm sure that what I'm about to get in to has been discussed a zillion times but I'm feeling a certain sense of therapy just being here and posting so I'm being selfish at the moment; forgive me.

    My dad (he is 64 years old) has recently been diagnosed with MDS. I don't know some of the details off hand that I wish I did, but I know his is characterized by a very low platelet count, and I believe 5-10% blasts. In addition, some gene / chromosomal issues / damage that seemed to be what the biggest issue was (?) I could be wrong on it's relative severity but this is what was brought up at the last visit. He was given 8-16mo.

    His 3 "treatment" options were some chemo (I have the exact drug written down but it's upstairs and I'm lazy atm) that would be 7 days / mo. Mon - Fri, no Sat or Sun, then continuing for the following Mon & Tue. The 2nd option was a bone marrow transplant with all the major caveats that brings, and the 3rd option was a potential clinical trial.

    My first reaction is/was to get as many eyes on this as possible. I pushed for a 2nd & 3rd opinion which basically just meant engaging the VA and UCSD medical center which are sort of connected. His initial oncologist as at Kaiser Zion in San Diego. The lady at the VA was absolutely heartless in our plea to please take our paperwork and get the process started (mind boggling how cold hearted some Dr.'s can be), but UCSD medical center was very willing to expedite and jump in so many people are looking in to this now as we speak.

    My question: I know that BMT is risky and grueling. In my dad's case though, anything other than that is going to lead to death. We were told 1 : 5 people die just from the procedure. HOwever, I read online in some places that people have been cured from MDS doing this. I was thinking, if I had this, I would want the BMT. I would want to live, I would fight for that BMT. I'm just curious why isn't it something that our doctors are trying to promote? It's confusing me, I'm not understanding. I know that it will be a year of hell. I know that he could die. But the alternative is death too plus, this way, he may actually live. There is hope there. What am I missing here? Or, am I wrong, I'm not missing anything and yes, this is an option, and yes I should go after it? My dad has 1 brother and I know that means a possible 1 : 4 match, otherwise it's a stranger and that's a 1 : 1M chance of a match. I don't know how big the donor pool is but I'm predicating this (possibly being very naive) that we find a match. Anyway, I would appreciate any input on this and thank you.

    ~billy

  2. #2
    Administrator Top User Didee's Avatar
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    What does your father want to do? You haven't mentioned his feelings on this. Yes it is a very big decision.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Newbie Regular User
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    Hi Billy,

    Yes, BMT is an option. It's very hard on the body. From what I understand, it's a more difficult recovery for older people. I was 51 when I had my stem cell transplant. None of my four siblings matched me, but two donors were found that were 10 out of 10 match for me. It was a very tough road: kidney disease, infections, graft vs host disease and a number of other issues. But this was my only chance for a cure. I took it. I am 14 months post transplant and am still in remission.

  4. #4
    My father is panicking and wants to start the initial chemo. The problem is that I don't believe he understands that the chemo treatment is more about prolonging life and is not about beating cancer. My dad is this tough guy that has an attitude of "what is to be, will be, it's all ok, I've lived a great life, I'm ok." The truth though is that I know that's BS. He was about to retire. Has gone through massive efforts over the last year to position himself perfectly for an amazing retirement. I mean really, he has really done well and got things setup so perfectly. He just finished remodeling his home to sell it and they were taking all this money out to Arkansas to build a home in this beautiful area where some of his other family is. My cousins (his nieces and nephews have bought land there). My uncle and aunt moved out there but unfortunately my uncle just lost a bought with cancer (Agent Orange from vietnam) so now my aunt is there lone until the rest of the of the family starts building their homes on this big 20+ acre area overlooking a river. He hasn't stopped talking about that for the last 5 years. Now it is being taken away and I'm not buying in to him being just ok wtih it all. So, his feelings are hard to decode. I'm going to push my weight around on what I think is right and, of course so long as he is ok with any idea I bring up, I willl attack that angle like a

  5. #5
    He's 64. He's in good health. Is 64 considered "old?" I noticed lots of material mention "old" and "young" but seldom include actual numbers.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this situation with your dad. The final decision is his, naturally. A lot would depend upon the proliferation rate of the blast cells. If they are slow-growing, there is certainly time for a clinical trial. Clinical trials are the only way in which medical science is advanced, and I highly recommend them, if one is appropriate and available. If his platelets are so low that he is bleeding internally and needs transfusions, it is more urgent. Much of chemotherapy raises the specter of further marrow damage as well as a secondary cancer, and that occurred in my case - the secondary being 20q deletion MDS. However, I was at 26% blast cells at the time of my transplant.

    60 has been the arbitrary age cut-off for transplants, but is widely being disregarded as experience with geriatric BMTs is gained. His overall health weighs in. As well, there are at least two types of allogeneic transplants: the full, myeloablative and a mini allo. Myeloablative means that his marrow is destroyed in the hope of eradicating the blast cells along with the rest. The hope is also that the donor cells will engraft. A mini-allo would be non-myeloablative, in that he would retain some of his marrow so as to fight infection until engraftment. The hope is also that his donor cells would dominate and eventually overcome any of his original marrow.

    A third potential variety is a moderate-intensity allo transplant. This is more properly a stronger version of the mini allo, bridging the gap between mini and full allos. Some marrow is retained, but conditioning chemo and radiation are perhaps more intense than with a mini. The BMT downside is that old bugaboo of graft-versus-host-disease. In it's acute form, it can be fatal. In its chronic form, it can cause many auto-immune conditions as the new immune system may choose to attack various organs. There is much uncertainty and little assurance.
    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.

  7. #7
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    An acquaintance in San Francisco area - male, age 67 - had a good result about two years ago having his MDS treated with a BMT by a Dr. Lloyd Damon at UCSF (UC San Francisco). He was treated for abou 6 mos. with azacitidine (hypomethylating drug) as preparation for BMT, and then given normal heavy conditioning (heavy chemo) and transplant. He seems to have done very well, with minimal graft-versus-host disease,mand is back to work and normal life. He WAS very lucky in finding a perfect (10/10) donor mateh in the database, however, (unrelated donor; not family; but perfect match). I think this was a large factor in his success (minimizes GVHD the more perfect the match), though patients are individual, and other factors of individual's makeup, as well as skill of doctor and transplant process, also influence success. You might investigate Dr. Damon or see if his office could refer you to an equivalently excellent transplant doctor in San Diego or L.A. The closeness/perfectness of match will matter greatly also I think, however.

 

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