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Thread: To anyone with ALL or AML - Weight Loss

  1. #1
    Newbie New User
    Join Date
    Apr 2011

    Question To anyone with ALL or AML - Weight Loss

    How much weight have you all lost..?
    Cause in about 3 weeks I went from a size 7-8 in jeans to a size 4.. I was 155ish and now I'm 135ish..
    Are any of you having this problem?
    Dont give up

  2. #2
    I lost 50 pounds and have now gained back 30. You will lose weight, especially with a long hospitalization. Walk as much as you can, but listen to your body and know when to stop. Eat everything you can. It will come back. Never give up.
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

  3. #3
    I have APL and lost around 50 or 60 lbs my first month after diagnosis. I would eat like crazy between chemo because i would loose 15 to 20 lbs each chemo. The sore throat was the major problem along with throwing up.

    I drank allot of protein drinks to keep from going on bagged food when in the hospital.

  4. #4
    Ensure is great. Lots of calories and isn't too effected by the mouth sores (mucositas). They also have a new one with lots of protein for muscle mass. It's made by Abbott Labs. It's expensive, but I was getting it in the hospital. Best of luck.
    Chuck was diagnosed with A.L.L. in Nov, 2009 at age 61,
    Remission, July 2010, Diagnosed with MDS in Jan. 2011
    Stem cell transplant in July, 2011, Just passed day 130 post Tplant.
    Cancer might rob you of that blissful ignorance that once
    led you to believe that tomorrow stretched forever.
    In exchange you are granted the vision to see each today
    as precious, a gift to be used wisely and richly. (UCSF 11 Long)

  5. #5
    I would use the Ensure provided by the Cancer Hospital when I ran out of Myoplex that I purchased. They even had small refrigerators in the rooms for cancer patients to store drinks etc.

  6. #6
    I lost about 65 pounds at the most. I was around 200 when I was diagnosed and went all the way down to 135 at my lowest. After having my stem cell transplant I gained almost all my weight back. The prednisone helps with that LOL. When I was having head and neck radiation I was having terrriible sore throat problems and actually coughed up part of my throat lining! It was scary!

  7. #7
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to welcome you here, but we have not heard from this member for 6 1/2 years. And, regarding the HCG diet, this is from the Mayo Clinic website:

    Has the HCG diet been shown to be safe and effective?
    Answers from Katherine Zeratsky, R.D., L.D.

    No on both counts. In fact, the Food and Drug Administration (FDA) has advised consumers to steer clear of over-the-counter weight-loss products that contain HCG. HCG is human chorionic gonadotropin, a hormone produced during pregnancy.
    As a prescription medication, HCG is used mainly to treat fertility issues. HCG is not approved for over-the-counter use, nor has it been proved to work for weight loss. Some over-the-counter HCG weight-loss products are labeled "homeopathic" but the FDA says they're still not safe. Companies that sell over-the-counter HCG weight-loss products are breaking the law.
    We are strictly science-based here. Alternative, homeopathic and all other unproven therapies/diets/treatments can best be discussed on other websites. Thank you for understanding.
    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.

  8. #8
    Super Moderator Top User
    Join Date
    Dec 2011
    Quote Originally Posted by susanjade View Post
    Hi Jacobey,
    Have you followed any diets to lose weight? As you are all down to 135 pounds, I am anxious to know your diet secret. Have you heard of HCG Diet which is a very low calorie diet?
    My suggested me to follow hcg for weight loss. Please post a reply.
    Susan, this is a cancer forum and losing weight is generally not considered desirable here. If you want people to post replies to you about weight loss, please go to a weight loss forum. Thank you.


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