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Thread: Unsure about chemo

  1. #1

    Unsure about chemo

    I am a 41yr old single mom that is supposed to start chemotherapy in a few days, but am very unsure if I want to go through with it. Iím terrified and canít seem to wrap my head around why I would want to walk into the hospital feeling great, and knowing that they are going to poison me and I wonít ever feel the way I do now again. Would love to hear someone else thatís been through chemo tell me itís worth the risks.

  2. #2
    Senior User
    Join Date
    Jun 2017
    I have not gone through chemo yet but am at the present going through immunology, 2 different drugs being given. I can completely understand being terrified, and even though right now I feel really good, these drugs they are putting in my body are giving me the chance to live and hopefully not let my cancer grow. I think that after chemo or immunology or radiation, we hopefully can feel ourselves again. Last year I had radiation and after a few months I felt totally like my former selve. You are young and chemo will give you the chance to live a long life, hopefully cancer free.

  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear this. You're a mom, so the picture is bigger than yourself, right? You would do anything for your children! Well, the picture has suddenly changed and now cancer treatment is part of that "anything" that you would do for your children. I am guessing that much of what you have heard about chemotherapy is either out of date, exaggerated or possibly just false.

    It is not a bomb that they inject you with and hope that you survive once it explodes. It is carefully planned and dosed so as to be most effective against the cancer and the least harmful to you. The monitoring of it is on-going. As well, you can stop at any time if you make that choice.

    Now, for some perspective, over the past 10 years, I have received 18 chemotherapy drugs in the most heavy doses that I could tolerate, as I have had two aggressive cancers on three occasions which had to be stopped as quickly as possible. After all of this, I am still alive, and very happy to be alive. I think your worries are groundless.

    Life has forever changed. The new bottom line: Everything must be balanced against what will inevitably happen of you do not have treatment. Your kids both want and need you to stick around.
    Last edited by po18guy; 09-27-2018 at 09:09 PM.
    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.

  4. #4
    Moderator Top User IndyLou's Avatar
    Join Date
    Jan 2014
    My mother in-law was treated for breast cancer over 7 years ago, and is enjoying a very healthy life post-cancer. It is true however, that the treatments (chemo) were very toxic, and neuropathy in her extremities was excruciating. Part of that was on her--she neglected her pain medication for fear of "becoming addicted," and she readily admits to it now. Otherwise, she's recovered quite well, and enjoys her family and especially her grandchildren.

    You present a scenario where you "feel" fine walking into that hospital, and you wonder why you would willfully accept a poisonous cocktail of chemotherapy. The truth is, your feeling fine is relative to the deadly cancer growing inside you. Six months from now, if untreated, the cancer could grow progressively larger and metastasize throughout your body. Your chances of survival if left untreated may grown significantly smaller, and future treatments might not help.

    Your best chances to eradicate this beast will occur if you treat early, as opposed to waiting. You don't want to have to explain to your young children that you can't be around for them because you chose not to be treated.
    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


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