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Thread: AML - Weight loss/eating tips

  1. #1
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    AML - Weight loss/eating tips

    Hello. My 76 year old mom was diagnosed with AML in March. She is taking chemo pills twice a day. Her bloodwork is improving, but her appetite is gone and she eats a bite here or there, but not much more. She has lost 10 pounds in the past month. She has ulcers in her mouth (currently on meds for that) but she says things don't seem to go down well when she eats. Too dry, tastes bad, gets full after a bite, and every time she thinks she's interested in something she isn't once it's in front of her. She hates milk and is struggling with Ensure/Boost. Pretty much all food has lost its appeal. She's also stressing out about eating because she knows she has to.

    What can we do to help her? My sister and I are worried that things will go badly if she doesn't keep up her strength and fuel her body. Our mom is tired and ends up going back to bed in the middle of the day. She complains that her stomach doesn't feel well, but we think maybe it's because she takes medication on an empty stomach.

    If you have any suggestions on how to get nutrition into a tired, frustrated woman, please let me know. Thank you!

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Very sorry to hear this. What is mom's attitude? They range from full speed ahead to I'm done. As to appetite and nausea, there is a prescription called Marinol which helps with that. From the Wiki:
    "Dronabinol trade names Marinol and Syndros is a synthetic form of tetrahydrocannabinol (THC) approved by the FDA as an appetite stimulant for people with AIDS and antiemetic for people receiving chemotherapy."
    Since it addresses both issues, it is certainly worth asking her and her doctor about. I used it in the hospital post-transplant. It jump-started my appetite, and I needed it only for a few days.
    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 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 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 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 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.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, treatment with Imbruvica (Ibrutinib) or clinical trial of Interleukin2 being considered.

    To date: 1 cancer, relapse, 2 cancers, then 3 cancers simultaneously, 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 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. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

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

  3. #3
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    What worked for me was making fruit smoothies: strawberries, bananas, half a packet of vanilla Carnation Instant Breakfast, milk and/or vanilla ice cream. I didn't care for sugar, but the taste of fruit still was very pleasant.

  4. #4
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    Thanks for your suggestion. I just came back and saw your reply to my post. I'm going to fly up to see my mom tomorrow. I think she is at the point of hospice. She is unable to take care of herself and she stopped chemo on Sunday because she felt so sick the doctor said it was doing more harm than good.

  5. #5
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    My problem, I had Dry Mouth, No Taste from my taste buds getting destroyed by radiation and chemo. I also had no appite and went weeks without eating in hospital, they put me on TPN then took me off due to liver going high. However when I got out finally, I had and still do have a very hard time with food, no taste Dry mouth. The Dry mouth is the worse. However I eat a lot of Soups, anything with liquids and lots of spices.

    I also like bananas popsicles from wal-mart. I've also used biotien mouth rinse, gel and other things to help with dry mouth. As far as my appetite I found out if you do two things you can get your share of food. Eat small portions through out the day. Also don't drink anything before you eat, it ruins your appetite. It's a matter of getting your appetite back first, then finding what you can handle. Don't worry about weight loss, it will gain slowly. Just find something that works and small portions.
    You can follow my fight with AML leukemia at link below.
    https://www.leukemiafighter.org

 

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