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Thread: Transplant or not???!!!! Help

  1. #1
    Newbie New User
    Join Date
    May 2014

    Transplant or not???!!!! Help

    My Dad is 69yrs old and has AML with no genetic abnormalities. He went through the initial chemo treatments and has been cancer free for 14 months. The cancer has now returned. They have tested his heart which is fine but Dr is still suggesting he only take the mild treatment to extend life (9 months).She also was leaning this way when he was first diagnosed over a year and a half ago.She has indicating she will do transplant if that is his wish but will not or at least has not provided any stats for my dad to make an informed decision on. IE chances of survival are approx 10-20% if he does transplant . her position is my dad is elderly but he walks routinely and is a young 69 as his heart test proved. Where can I get info on transplant success/mortality rates. Any help is appreciated.
    Thank you

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I would visit the websites of various institutions that are National Cancer Institute certified treatment centers, and which offer transplants. Send a few emails or make a few calls and I think that you will receive more clarity on this issue.
    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.

  3. #3
    Regular User
    Join Date
    Apr 2014
    The HRSA website for Blood Cell Transplant has data on every disease by remission, age, gender and survival at 100 days, 1 year and 3 year. Depending on which type of transplant (Autologous or Allogeneic) you can see the results for 2nd remission at http://bloodcell.transplant.hrsa.gov/research/transplant_data/us_tx_data/survival_data/survival.aspx. Note that these stats are from 2003 to 2008 so the numbers are likely better today. Nonetheless, you can also look up each center in a particular State and see how many transplants they have done and then look at the recent numbers from 2008 to 2013 as well as overall survival stats for each individual center at http://bethematch.org/for-patients-and-families/getting-a-transplant/choosing-a-transplant-center/u-s--transplant-centers/. [COLOR="Black"]I called and spoke to a Ms. Diane Carr at Be The Match who was just great and very helpful about ALL my questions anyone there I am sure will be great. I armed myself with all the stats for each Center and was prepared to discuss the options. The issues you face are age, overall medical condition, GVHD and other possible complications. Get a 2nd opinion or even a 3rd as I did to make sure the decision you make with him is the right one weighing all the factors. Good luck, and don't lose hope, in my case we ended up with 3 different opinions so you need to arm yourself with as much knowledge as possible to be prepared to discuss the issues with the doctors.
    J. G. Fitzs

  4. #4
    Newbie New User
    Join Date
    Jun 2014
    hi stevegill,
    I feel sorry for your Dad. but i hats off to him as he is very positive and full of life despite this. i m replying you by just thinking that it may be helpful of yours. AML has various treatments chemotherapy, radiation therapy and stem cell transplant (bone marrow transplant). As per my knowledge, stem cell transplant has high success rate in India and most cost flexible rather than other countries. Around 500 bone marrow transplants have been taken place with excellent success rate. There are some healthcare agencies, m in touch with. One of is <link removed per forum policy>. you can send them your query. they will refer your case to good surgeons in Indian hospitals and will also tell you the cost, success rate in your case and other facilities like accommodations etc. I had a very good experience with them. Feel free to contact them. hope this helps
    Last edited by po18guy; 06-09-2014 at 07:33 AM. Reason: link in first post


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