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Thread: Is the "dying process" reversible?

  1. #1
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    Exclamation Want to feed family member juice but her stomach has a fluid problem

    So a member in my family (47 F) came back from surgery (Getting fluid out of her stomach) and hasn't been the same since. She is super skinny, her stomach however is huge, and she is always dazed, sleeping constantly, not eating and not exercising.

    I want to feed her lots of homemade healthy vegetable and fruit juice and help her exercise but I have two problems that I hope someone can help me about:

    1) Is it okay to feed her lots of juice (she won't touch hard foods) even though she has excess fluid in her stomach?
    2) I'm afraid if I take her outside in the winter she will pass out or something, what can I do to help her exercise and gain some muscle?

    Please, please help, thank you

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Does she have some type of cancer?

  3. #3
    Moderator Top User jorola's Avatar
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    And always seek professional medical advice for such questions.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Indeed - all of the above. What are her desires and concerns? As much as it may pain us, it is her life to fight for, or to forfeit.
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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.

  5. #5
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    Yes metastatic breast cancer for a long time now

  6. #6
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    Starting to become very thin

    A family member has been battling metastatic breast cancer for a long time and just recently it got really bad after coming back from surgery to remove fluid in her stomach.

    She is very, very thin right now so I'm trying to feed her as much as I can but she 1) won't eat and 2) pukes when she does.

    What can I do??

  7. #7
    Administrator Top User lisa1962's Avatar
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    Sorry to hear of your family members difficulties. I have merged your two threads as keeping things all together helps our members to respond better if the details are in one thread.

    My suggestion, reach out to her doctor and inform them of these events but keep in mind, it is her choice on what she is willing to do.

  8. #8
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    Quote Originally Posted by lisa1962 View Post
    Sorry to hear of your family members difficulties. I have merged your two threads as keeping things all together helps our members to respond better if the details are in one thread.

    My suggestion, reach out to her doctor and inform them of these events but keep in mind, it is her choice on what she is willing to do.
    Thank you. I'm just 17 so I'm not sure if I have the authority to call her doctors.. do you think I could?

  9. #9
    Administrator Top User lisa1962's Avatar
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    Probably not. Those conversations are left up to either the patient or the family member who has medical authority to speak on their behalf.

  10. #10
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    Quote Originally Posted by lisa1962 View Post
    Probably not. Those conversations are left up to either the patient or the family member who has medical authority to speak on their behalf.
    I thought so.. that's why I'm trying to as much as I can but it's just so hard to know what to do. Right now the best thing I can do is feed her as much as I can because she is looking like she's going into the anorexic phase, but she has a swollen belly because of fluids and she also pukes, do you still think it's a good idea to try and fill her up with calories?

 

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