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Thread: Does the body "get used to" chemo?

  1. #1
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    Does the body "get used to" chemo?

    Hi all - I'm just wrapping up my 5th bi-weekly of Folfirinox regimen. One thing I'm noticing is that the side effects that were absolutely brutal during the first and into the second cycle, now seem to be diminished. They're still there, but the severity has gone down for all but one of the side effects. The peripheral neuropathy has continued and seems to linger longer than previous cycles. Has anyone else experienced this? I'm worried that this might be a sign that the chemo is becoming less effective, but have no clue. TIA.
    -----------------------
    Brad
    Central Massachusetts

    April - June, 2019: mild to moderate abdominal and back discomfort -- wouldn't describe as pain
    June, 2019: Diagnosed stage IV, 4cm pancreatic body tumor, 1 suspected met to liver
    June, 2019 - Present: Folfirinox

  2. #2
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    Beginning abraxane/gemcitabine/cisplatin my hair fell out. When it became less effective, my hair was growing back in. Seems like the whole body responds, not just tumor.
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose

  3. #3
    Super Moderator Top User po18guy's Avatar
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    The body? No.
    The mind? Maybe.

    I have been in treatment for 11 years now. Have almost completed my ThD (Test of human Durability). I have found that it helps if you remain focused on the long-term strategy.
    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
    Super Moderator Top User ddessert's Avatar
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    Peripheral Neuropathy: It probably depends on the ultimate cause of the neuropathy. Mine was caused by weight loss (the nerves got exposed to raw bones due to loss of fat and muscle) and improved as the treatment worked and I regained weight.

    Others have neuropathy from the platinum itself. I was evaluated by a neurologist before my chemotherapy started so we could have a baseline for later to see if it was getting worse, and why.

    So here's my theory on how I'd tackle neuropathy if I had to again:
    1) Chemotherapy works against rapidly dividing cells
    2) Cold (skull) caps worn during chemotherapy have been shown to prevent hair loss. The theory is that the hair follicle cells are cooled so that they slow down and do not take up so much chemo and remain working later.
    3) Keeping the affected nerve areas cold during the chemotherapy treatment and another 30 minutes *might* reduce the neuropathy.

    So, still a lot of question and concerns about this, but I'd be willing to test it out on myself if I had to.

    a) An oncologist friend of mine said this won't work and it will be painful as we are cold sensitive.
    b) If nerves are affected, where are they affected? Those nerves go from the spinal cord to distant areas of our body. Where is the right place to cool?
    c) A patient who did try this said it worked for them. Now that's just one person and there is no way to know it was *better* than not doing it.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  5. #5
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    Quote Originally Posted by FattyLumpkin View Post
    ...The peripheral neuropathy has continued and seems to linger longer than previous cycles. Has anyone else experienced this? I'm worried that this might be a sign that the chemo is becoming less effective, but have no clue. TIA.
    Yes. I just had my 8th Folfirinox infusion. I started noticing post-treatment neuropathy sometime after the 2nd infusion, if I recall correctly. It's been a slight burning and sometimes a very light pins-and-needles feeling in my feet and hands. It comes and goes throughout the days. The intensity of it has not gotten worse... well, perhaps in my left foot it has, but the rest is no worse. However, it does linger much longer, meaning I feel it for more days after infusion.

    My oncologist is already talking to me about taking out the Oxaliplatin (the drug that has neurotoxic side effects) from my chemo treatment. If I can continue to tolerate the neuropathy, then she'll allow me to get to 12 infusions before stopping it.

    I don't think that the chemo side effects (outside of neuropathy) getting more tolerable is anything to worry about. I think your body and mind just become used to it and it's easier to handle as time goes on. Just keep your head in the game and your mind focused on getting better. I know it's hard but stay positive. And you're not alone in this. There are a lot of folks battling the same battle, and we're happy to talk about it.

    -TJ
    Apr. '19 - Diagnosed Stage IV with many liver mets, CA 19-9 500,000
    May. '19 - Started chemo - FOLFIRINOX
    Jul. '19 - CA 19-9 100,000
    Aug. '19 - CA 19-9 77,000 CT scan shows shrinkage in tumors
    Sep. '19 - CA 19-9 52,000 (continuing chemo)
    Houston,TX

  6. #6
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    When I was about to have Folfirinox, I read somewhere that neuropathy from Oxaliplatin could be permanent and it was the worst side effect of this regimen. My neuropathy got worse every time with treatment but I always got fully recovered from it before the next treatment, just taking longer each time. My doctor said there was no good medication to help but acupuncture was always something I could try. I didn't have any permanent nerve damage from chemo. My nerves were damaged in surgeries but they seem to have recovered.

  7. #7
    Qlu, you've done so well. What stage were you at diagnosis?
    February 2016- diagnosed with PC
    March 2016- inoperable due to arteries, also liver mets suspected
    March 2016-January 2017 -Gemzar/Abraxane
    February 2017 surgery-PC tumour and liver mets removed at same time
    July 2018 Back on Gemzar/Abraxane due to rising CA 19-9. Scans were clear.
    January 2019 Tried FOLFIRINOX after G/A became ineffective. FFX doesn't work. CA 19-9 rising
    February 2019 two small tumors appear on liver
    May 2019 - CA 19-9 skyrocketing. Started IMRT radiation treatment.
    August 2019 MRI done. No Evidence of Disease (NED). CA 19-9 dropped significantly. Still not normal range.

  8. #8
    Moderator Senior User BrigitteM's Avatar
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    "I'm worried that this might be a sign that the chemo is becoming less effective, but have no clue. "

    I personally never heard about lingering neuropathy being a sign that chemotherapy is less effective. This is a question I would ask to the oncologist or oncology nurse.

    Brigitte
    __________________________________________________ ___________________
    1/12/2016 No symptoms except ongoing fatigue; blood test revealed elevated liver enzymes
    1/18/2016 Liver ultrasound, then MRI confirmed enlarged bile duct
    1/21/2016 ERCP and placement of a temporary stent
    1/28/2016 CT-Scan showed a lesion on the head of pancreas
    2/09/2016 2nd ERCP + EUS + FNA
    2/12/2016 DX Borderline resectable pancreas ductal adenocarcinoma - Stage 3 @ 61
    2/24/2016 FOLFIRINOX 3 cycles (6 infusions)
    5/12/2016 CYBER-KNIFE Stereotactic Radiation 3 sessions
    6/16/2016 WHIPPLE + portal vein and right hepatic artery reconstructions - 0/19 nodes pos - no mets. Restaged to 1A
    8/31/2016 FOLFOX for 3 cycles (6 infusions)
    Sept 2016 Know Your Tumor - PANCAN.org
    11/4/2016 CT Scan clear - NED
    May 2017 Liver lesion - DX mild fatty liver disease - NED
    Aug 2017 Several small lung nodules - slow growth - NED until August 2018
    Aug 2018 Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    March 2019 Lung nodules are stable

  9. #9
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    Quote Originally Posted by jackieb501 View Post
    Qlu, you've done so well. What stage were you at diagnosis?
    Stage 2B at diagnosis but has been at stage 4 for more than 2 years. No chemo since May 2016 though.

 

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