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Thread: Relative with cancer and worried

  1. #1
    Regular User
    Join Date
    May 2016

    Relative had 6 months of chemo for a aggressive stomach cancer but isnít in remission

    She hasnít been in touch with anyone for months so I as well as everyone else I found out on FB that she had just finished 6 months of chemo. But she is not in remission. They are running tests to find out whatís next.
    What I was told is she has a very rare and aggressive form of stomach cancer that has spread to her abdomen. Isnít stomach and abdomen the same? The way they made it sound on FB is that chemo was done so I assumed she was in remission. What is the prognosis for this kind of cancer if she isnít in remission?

  2. #2
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Sorry to hear about your relative. Just because someone has underwent chemo, does not guarantee remission.

    You are getting info about this relative second hand and from social media at that.

    If you are concerned, why not call this relative.

  3. #3
    Regular User
    Join Date
    May 2016

    Relative with cancer and worried

    She hasnít been in touch with anyone for months so I as well as everyone else I found out on FB that she had just finished 6 months of chemo. But she is not in remission. They are running tons of tests to find out whatís next.
    What I was told is she has a very rare and aggressive form of stomach cancer that has spread to her abdomen. I am not sure the stage. The way they made it sound on FB is that chemo was done so I assumed she was in remission. What is the prognosis for this kind of cancer if she isnít in remission? Iíve tried to reach out but I get very vague answers so I donít want to pry. I just get responses from her sister like ďwe are hoping for the best and that she beats itĒ. And she said she is ďdoing good right nowĒ. Only a few pics online and one I notice a circular thing in her chest. Iím assuming that is a chemo port. And she looks very skinny. She also got divorced last year and met a new guy (before diagnosis) and just married again in Nov without telling anyone but close family and the guy has been helping her through this. So Iím happy she has a great guy to support her but of course it goes through my mind that they got married quickly because they know she is dying and he loves her so much he wanted to make her his wife.
    Last edited by joeyk4; 02-07-2018 at 04:40 PM.

  4. #4
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013

    I have moved your most recent post you started within the Coping and Support Forum and moved it here and merged it with your other thread you started a short time ago.

    We can not even begin to "guess" the prognosis. We are not doctors and you are also getting information through social media and second hand.

    Instead of trying to figure out the aggressiveness of her cancer, just reach out to her, tell her you are thinking of her. Leave the caregiving up to those that are there with her.

    If your able, perhaps a trip to see her or drop a card in the mail letting her know you are thinking of her.


  5. #5
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    Hi, joey-

    I'm sorry to hear of your relative's situation. Lisa gave some good advice--it's really hard for us to guess what might be going on with her. If she's undergone chemo treatment and doctors have not declared the cancer is in remission, perhaps they're running additional tests to see if other treatments might work better for her.

    To your question about the anatomy, the stomach is an organ, but the abdomen is the cavity or space where the stomach is located. You can also find intestines, liver, pancreas, etc. within the abdomen. If the cancer has spread from the stomach into the abdomen, there is now cancer in this cavity.

    As far as prognosis, we can't make a third-hand guess. I would echo what Lisa said--send a card to let her know you're thinking about her. If you have her number, give her a call or send a text.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    "Cancer" is like saying "sick." What does it mean? It can mean a tiny speck on your skin that is snipped off by the dermatologist, a slow growing cancer that need never be treated or, what folks fear the most. It may be esophageal cancer, stomach cancer, or some abdominal cance which has moved to the stomach or other abdominal area. It makes a huge difference which type it is. If the cancer is public information, just call! Drop by! Email. Fighting cancer is not like fixing a flat tire. Chemotherapy may or may not immediately eradicate it. Even if it does, the cancer can always come back. Not as a worst case, but I had 18 different drugs in nine regimens over seven years. It was my 5th "salvage" regimen that placed me in full response.
    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.


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