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Thread: Supporting friend with soft tissue sarcoma

  1. #1
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    Question Supporting friend with soft tissue sarcoma

    Hi guys, it's my first post on here but here we go and sorry to jump on the thread slightly off topic . I was looking for some advice as a close friend of mine was diagnosed with sarcoma last year , unfortunately it was caught late on and it's progressed to a cellular level however they have received treatment well so far and managed to fight against the growths but recently had news which has not been great but there are still options out there. My question really is that I, with others have been supporting through out , but is there any one in a similar situation could recommend anything they have done to offer that extra bit of support? I know it's a bit of an odd question as naturally someone would do what they possibly can to support a friend in such a time but I was just wondering if anyone had any advice even perhaps in general. Thank you for taking the time to read this

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of the diagnosis. I moved your post and turned it into its own thread, as the original thread has been dormant since 2015. Supporting a friend is highly individualistic, and while some needs are clear, others you may have to discern. Being a cancer patient is a true dichotomy in that we need both friendship as well as solitude - occasionally at the same time! However, you will have some great, helpful replies here.
    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.
    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.
    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. Active surveillance is the course of choice.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 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. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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

  3. #3
    Senior User Dead Man Walking's Avatar
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    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
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    Well, your question is indeed unique, and I guess that makes you a Square Apple in a round hole...... My 1st perspective on cancer came from being a therapy dog volunteer in a cancer-only hospice for about 7 - 8 years, and from that perspective it was a total non-issue, because everybody there had a terminal diagnosis. As such, the subject never came up unless the patient wanted to talk about it, and with Sasha and then Annabelle next to me, all they wanted to talk about was my dog or their dog(s). After I became a cancer survivor with a real "dead man walking" initial diagnosis, the last thing I wanted to hear from anybody (meaning people without cancer) was that they were sorry for my condition, or about what a horrible twist of fate this was. In conclusion, unless the patient themselves wants to talk about their own situation with their unique cancer, trying to bring up the subject is pretty much a wild goose chase.

    On the other hand, the question you can ask which will get results is "how has being a cancer survivor changed what you want to do with your life?" That should get you going wherever the survivor wants to go, and if they hadn't thought about that yet, it may start them on their own personal journey. Then you can start filling in the pieces, and offering up either solutions and/or help to do things they can't, depending on how hard the cancer is hitting them. Once you get into it, the whole concept of how having cancer can open up new vistas and possibilities is practically endless, and if you can get to that point then the great divide between the patient and yourself can vanish like a puff of smoke.

    Seeing as I am writing this the day after a 32 hour, three flight, totally screwed up journey from Milan to Louisiana, I'm not sure how this answer will be accepted, but as a true DMW you have to take the shot when you get the chance, and regrets are utterly useless.

    I hope this helps in some way, and feel free to ask more questions, as a lot of us are here for the duration.

    Sincerely, DMW
    05/6/16 pre-op physical for knee surgery show low WBC & RBC
    05/22/16 [Birthday] Results of BM biopsy: AML 25% blasts CD34 with inv t(3:3) mutation, HIGH risk
    05/30/16 Undergo 3+7 chemo regimen
    06/??/16 TSHTF!! 3+7 doesn't touch AML, knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML. [:tombstone:]
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows CD34 cells 12%
    Three 5 week cycles of azacitidine.
    04/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks.
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added
    Oncologist estimates survival time now 2 - 4 YEARS!!!

 

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