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Thread: Dianosed with CMML

  1. #1
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    May 2019
    Hello, I am new to this forum. Was recently diagnosed with CMML. Will start Chemo next week (decitabine), 5 days, then 4 weeks off, repeat. I am waiting for a consult with a stem cell transplant specialist in Salt Lake City. Are there any people on this forum with CMML. Amy suggestions, experience? Without the stem cell transplant (which is high risk, even for me at 63 years), I am looking at being done with life in about 2 years.


  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    A reluctant welcome to you! The blessing - if there is one - in CMML is the "C" which stands for chronic, or slow-growing. As to transplant, that would depend on whether or not the leukemia shows sigs of becoming aggressive, or if treatment has not been effective and blast cells are above 20% or so of your marrow.

    Here is a link to information relating to CMML (Chronic Myelo-Monocytic Leukemia). It is always good to know as much as possible about "the enemy" so as to make informed decisions with your doctor.

    Last edited by po18guy; 05-16-2019 at 03:52 AM.
    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
    Hi Astrid,

    PO is surely the expert around here on hematologic cancers. But I have had two transplants in SLC at the Huntsman Cancer Institute....so if that is where you are being treated and where your transplant might be, drop me a reply. Be glad to answer any questions about that place, which I am very proud of and fold of. I am 67+, and 3 1/2 yrs out from my allogeneic SCT. doing fine. Best of luck to you.

    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.

  4. #4
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    May 2019
    Po, Thank you for the link.

  5. #5
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    May 2019
    Dave, I apologize to you and Po for not replying earlier. I go through phases where I need to stay off Dr Google and anything related to it because it makes me depressed.
    It looks as if your journey was uncomplicated. May I ask when you had the two transplants and how far apart were they?

    I have been to Huntsman for a second opinion and left with the same impression as you: absolutely awesome. I wish I lived closer to Salt Lake. On July 2nd, I have a consultation at the partner hospital in Colorado with the BMT doctor from Huntsman.
    2 weeks ago, I started with chemo; changed it from decitabine to Vidaza. Vidaza can be injected subq which I prefer to a port. Protocol is 5 days 2 injections, 3 weeks off, then repeat. If it does not elevate the blood count, I will have to switch to decitabine. I was told at Huntsman that the best time to do a BMT is when patient is in remission.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Quote Originally Posted by Astrid56 View Post
    I was told at Huntsman that the best time to do a BMT is when patient is in remission.
    Without a doubt, yes. During a transplant, your existing immune system is essentially killed, purging your marrow of the traces of your former immune system. At this point, you have zero defense against the cancer - except for that which is either injected or infused into your body.

    Therefore, even though the treatment which is designed to get you into remission may indeed be harsh and quite a trial, the intent is to give you the absolute best chance of beating this once and for all.

  7. #7
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    May 2019
    Po, I have to admire your mental stamina to keep going. I was ready to quit at the first undefined leukemia diagnosis. Had breast cancer stage I 10 years ago; treated with chemo and radiation after lumpectomy. It cured the breast cancer alright, but gave me CMML. 10 years ago, the medical approach to stage I cancer was still "let's shot at the sparrow with a canon". I was too uneducated at the time to resists chemo which - according to studies - was only given me a 4% improved chance of long-term survival. Well, no use crying over spilled milk.
    Is my understanding correct that the difference between BMT and SCT is this: BMT requires chemo (high dose or the standard protocol chemo for my type of leukemia?), radiation of the spine to kill the cancerous bone marrow, then BMT. Whereas SCT is without the high dose chemo and radiation.

    Thank you....

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    You are very kind. I too have had to learn the old-fashioned, hard way. Generally marrow transplants are fewer and fewer as they require the donor to submit to hip surgery to extract actual marrow for transplantation. The upside is that marrow transplants have less risk of Graft-versus-Host-Disease (GvHD). Due to the "relative" simplicity of a stem cell transplant, they are generally favored. I would guess the exception would be a family member/donor who was willing to give actual marrow from their hip.

    However, as far as I know, high-dose chemo is given in both occasions, since one's immune system will be essentially killed and a "baby" immune system put in its place. This baby has to fight the adult cancer, so the point is to be in remission or as close as one can reasonably get before transplanting.

    The theory behind high dose chemo is to saturate the blood with the drugs so that no cancer cell could survive. Practically speaking, the high dose part is scary, but it is of such short duration that the usual cumulative side effects do not show up. I am not saying it is pleasant, but rather, do-able.

  9. #9
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    May 2019
    Happy 4th of July Everybody!

    Saw the transplant specialist from Huntsman last Tuesday. It was an encouraging consultation. In the absence of other major health issues and still being relatively young (63, his words), he considers me a good candidate for stem cell transplant. Because I have no blasts (?), bone marrow transplant would not apply. Finding a match for an allogeneic donor will take some months. In the meantime, I will keep up with the Vidaza injections and blood transfusions. I have had the 5th blood transfusion last week (one pint) and fear is beginning to rise that my body will demonstrate adverse reaction to the other blood. I am sure the answer is out there somewhere as to how many transfusions can be done, but I am too scared to research this further. Supposedly, Vidaza will not bring about remission or even partial remission, according to the doctor. So is the protocol administered to keep the CMML at that level and not have it advance to AML?
    Stem cell transplants certainly have their risks, but with the poor prognosis of CMML, I would die anyway, sooner or later.

    I feel better this week. A little hope has come up at the horizon. I feel less doomed than I have in the last 4 months. Thanks for listening. Astrid

  10. #10
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    And, happy Independence Day to you! As to donors, siblings are best. Then children, then unrelated. In my case, we checked the world registry in both 2009 and 2015 and not a single match was found for this slice of white bread! They were not exactly stupefied, but perplexed. I had one brother who passed in 1994. Two children.

    "Have them tested" I was told. Miraculously, both were found to be acceptable for a haploidentical transplant. Since male-male and female-female transplants are best, I went with my son's stem cells, realizing that I would pick up his numerous allergies and possibly asthma.

    Go to www.BMTinfonet.org and snoop around. They are an absolutely great resource that I wish I had at the time.


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