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Thread: Palliative chemo

  1. #1
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    Palliative chemo

    My wife has now gone through 25 bouts of palliative chemo. They are beginning to get very difficult for her and recoup time is getting longer. How many rounds can a person handle normally? I realize we are all different and our situations are different but there must be an average number that one can tolerate. She can barely get out of bed, walk or eat even the smallest amounts and this is lasting nearly a week. She feels she has no choice as some abdominal tumors cause her great pain and she is trying to shrink them to lessen the pain. Meanwhile the mets in her lungs are also growing and she hopes to knock them back again. She has had good response to the chemo up to this point but at what point does the chemo become too detrimental? In other words when does the treatment become more harmful than the disease? She won't want me discussing this with her doctor.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Does HealthCanada currently have any clinical trials available? A provision for second opinions at this point?
    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.

  3. #3
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    No trials available and I don't understand the value in a second opinion at this point.

  4. #4
    Top User mojo's Avatar
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    Hi Belcoron, I was sitting here trying to remember how many palliative chemotherapy is my husband went through and Iím thinking it was 52. He also was trying to keep the cancer at bay. He went through two different types of chemo and it pretty much helped until finally one area in his chest was bleeding and caused pneumonia. We then went to another doctor to see about a different clinical trial which he was accepted into until the brain tumor started growing back and that automatically kicked him out of the clinical trial at that point it was really time for hospice but he did not want hospice and myself took care of him at home until he passed away 3 1/2 months later. The good thing with us is that everything was above board we all spoke to the doctor everything was discussed. We did it his way Because he was the one fighting this disease. I am hoping that you could talk to the doctor with your wife and work out the best plan for her. If thereís anything else I can answer help you with I would be glad to. Itís a rough time when you get to this point I wish you both the best and Iíll be praying for you both. Sharon

  5. #5
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    Thank-you Sharon and it's very helpful to know she may be able to have a number of rounds yet. I'm sorry you lost your husband. We have discussed a plan with the doctors and we know that palliative chemo is what she must endure until such time as she can no longer bear it or it stops working. I wanted to know as the chemo is now much much more difficult for her but to discontinue is not an easy option as she has tumors in the abdomen that cause her quite a bit of pain. The chemo settles it down until she takes a break and they grow again. Thanks again for your frank and caring answer.
    Ron

  6. #6
    Top User mojo's Avatar
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    Thinking of you and your wife. Hoping things are going ok.

  7. #7
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    It's all going quite well right now except for the hiccups. We are taking a trip to Ontario to see family, leaving tomorrow. We went to Germany in June which is where her family is located so we have been very fortunate to get these trips in. She has abdominal pain that comes and goes, too often for a good quality of life. They are deposited tumours from the laproscopic removal of a section of the sigmoid colon. The lung mets are not causing her any distress at this point.
    On our return trip we will stop and she will receive her 26th treatment of chemo. Thanks for asking and I hope you are also well and as happy as you can be.

  8. #8
    Top User mojo's Avatar
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    I’m so glad you were able to go on those trips. Kenny had some hiccups and he had some medication that stopped them but I’m not positive what it was. It was a side effect from chemo. You might ask the oncologist. I’m fine, me and my dog Max.

 

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