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Thread: Had to stop Oxaliplatin - what are my options?

  1. #1
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    Had to stop Oxaliplatin - what are my options?

    After 9 rounds of FOLFIRINOX, my peripheral neuropathy has gotten so bad that my doctor discontinued Oxaliplatin from the protocol. Since then I've had two rounds of FOLFIRI (just FOLFIRINOX without the Oxaliplatin). My doctor also explained that other chemo protocols with platinum-based drugs are not advisable right now due to the neuropathy.

    The plan from the doc is for me to continue FOLFIRI and wait for the neuropathy to ease up, and maybe we can return to using platinum based drugs in my therapy. I don't know how long that is going to take. My fingertips have been numb for over 4 weeks and don't show signs of improvement (I've been taking Gapapentin, but it hasn't seemed to make much difference).

    What scares me right now is that I understand that the chemo protocols that usually work are made up of multiple drugs. I fear that FOLFIRI may not cut it and my cancer will start growing again. I can't seem to find anything on the internet that compares FOLFIRINOX vs FOLFIRI.

    What other chemo protocols exist that lack platinum based drugs but show promise or effectiveness? Does anyone have experience with this?
    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 after 9 rounds of FOLIFRINOX, switched to FOLFIRI due to neuropathy
    Oct. 1, '19 - CA 19-9 44,000
    Oct. 28, '19 - CA 19-9 26,000 (cont. w/ chemo...)
    Houston,TX

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Gemcitabine/Abraxane (GAX) is the other front-line treatment option.

    If the FOLFIRI still shows efficacy (watch those CA19-9 numbers), then perhaps it still has legs for you? If not, a switch to GAX might be in order.

    Another option (in trials only) is substituting a PARP inhibitor for the platinums. The PARPi's work in a similar fashion but without nearly as many side effects. I'm hoping those trials pan out and we can switch over to PARPi's.
    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

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Are you being treated at MD Anderson?
    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
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    Quote Originally Posted by ddessert View Post
    Gemcitabine/Abraxane (GAX) is the other front-line treatment option.

    If the FOLFIRI still shows efficacy (watch those CA19-9 numbers), then perhaps it still has legs for you? If not, a switch to GAX might be in order.
    My oncologist said that neuropathy is also a symptom of GAX. We talked about it and she did not recommend me switching to it. Again, her plan is to wait and see if my neuropathy improves and then go from there.

    I'll definitely keep an eye on the CA 19-9.

    Quote Originally Posted by ddessert View Post
    Another option (in trials only) is substituting a PARP inhibitor for the platinums. The PARPi's work in a similar fashion but without nearly as many side effects. I'm hoping those trials pan out and we can switch over to PARPi's.
    I am looking at trials. Well, I have been all along, but now I'm looking at them very seriously.

    Quote Originally Posted by po18guy View Post
    Are you being treated at MD Anderson?
    No. But I have been to them before for a second opinion, and currently I'm trying to get an appointment with them for another second opinion or possibly switch to their care.

    Any recommendations?
    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 after 9 rounds of FOLIFRINOX, switched to FOLFIRI due to neuropathy
    Oct. 1, '19 - CA 19-9 44,000
    Oct. 28, '19 - CA 19-9 26,000 (cont. w/ chemo...)
    Houston,TX

  5. #5
    Super Moderator Top User ddessert's Avatar
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    MD Anderson should have some clinical trials available that have lower risk of neuropathy. It may take several weeks to get officially enrolled and started. You can always contact PanCan.org for their latest info on clinical trials anywhere in your area (like Baylor, UTSW). They work hard to have up-to-date information on all the trials.
    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

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,466
    Quote Originally Posted by legodude View Post
    No. But I have been to them before for a second opinion, and currently I'm trying to get an appointment with them for another second opinion or possibly switch to their care.

    Any recommendations?
    I would definitely seek another opinion on your options. An anecdote: There was a young fellow (26) who was diagnosed with a rare lymphoma and treated at a major California facility. Even after a transplant, he relapsed. The facility told him to get his affairs in order.

    He sought another opinion, as he could not believe that this was it. He consulted with a hematologist at an NCI facility in Washington State and was immediately given three additional drug options as far as treatment goes. He ended up entering a clinical trial, which was his 4th option.

    So, he went from zero to four options by making a single consultation at a research facility. Such facilities have the expertise, the research data and the willingness to think outside the box.
    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.

  7. #7
    Newbie New User
    Join Date
    Aug 2018
    Posts
    8
    My mom has gone through 14 cycle of GemOx but due to neuropathy and stomach inflammation she cannot take anymore Oxaliplatin either. her feet is almost numb now and she tends to fall down due to not feeling anything in her legs. and we have already gone through folfiri and it didnt work on her in 2018.
    So doctor is thinking of going back to Gem+Abrx. We dont live in USA and unfortunately no clinical trials available here so we cannot even try for that.
    Aug 2017-moms severe stomach pain & back pain
    Oct 2017-detected pancreas adenocarcinoma. Metastasis to lungs, lymph nodes and liver.CA 19-9: 320
    Nov 2017-started with gem+abrexene.CA 19-9 rise to 1840
    Dec 2017- mom doing well except weakness
    Feb 2018-finished with 6 cycles of gem+abrexene and no more stomach pain.
    March 2018- cancer stable and tumor reduced around 80-85%. Chemo break CA 19-9 130 from 4800
    May 2018-CA 19-9 raised to 930. New liver met found. Pancreas tumor still stable.Lungs clear
    July2018- Folfiri started. Mom is severely ill
    Aug 2018- 2 cycles of Folfiri, CA 19-9=7000.Not working
    Sep 2018-Switched to oxaliplatin & gemcitabine since mom cannot tolerate Folfiri.CA19-9=12000
    Nov 2018-4 cycle of GemOx and CA 19-9 is dropped to 3000 now. Overall, mom much better now.
    April'19-Pancreas tumor almost gone, Liver metastasis 50% shrinkage but small nodules in lungs found.
    Sep'19 - After 14 cycles of GemOx had to stop since mom cannot take the neoropathy anymore.

  8. #8
    Regular User
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    Thanks everyone for your responses.

    I got an appointment this week at MD Anderson with an oncologist much more specialized than my current doc.

    Quote Originally Posted by Tanzeena View Post
    My mom has gone through 14 cycle of GemOx but due to neuropathy and stomach inflammation she cannot take anymore Oxaliplatin either. her feet is almost numb now and she tends to fall down due to not feeling anything in her legs. and we have already gone through folfiri and it didnt work on her in 2018.
    So doctor is thinking of going back to Gem+Abrx. We dont live in USA and unfortunately no clinical trials available here so we cannot even try for that.
    Really sorry to hear that. Oxaliplatin is pretty horrible to deal with. Gem-Abrx does cause neuropathy according to my oncologist, but I don't know how severe it is as compared to other drugs. And it's probably different for each patient. (chemo seems to affect everyone a little differently)

    My finger tips are about half numb right now, and it's really pissing me off having to endure it. I can't imagine what your mom is going through with numb feet. That has to be horrible.

    Best of luck to your mom. I hope they can find a chemo that works.
    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 after 9 rounds of FOLIFRINOX, switched to FOLFIRI due to neuropathy
    Oct. 1, '19 - CA 19-9 44,000
    Oct. 28, '19 - CA 19-9 26,000 (cont. w/ chemo...)
    Houston,TX

  9. #9
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    Just an update - the doc at MD Anderson advised to proceed with Folfiri until it doesn't work, or the neuropathy improves and I can then resume Oxaliplatin. He suggested not doing any clinical trials until I've run through all my chemo options. There's a finite set of chemo drugs that could be effective, and I should do them one at a time until they are no longer effective (i.e. take my time and go through them slowly), and then look at clinical trials.

    I guess I'm in sort of a holding pattern, running on Folfiri, until I get more results. I'll have another CA 19-9 test in two weeks and also a CT scan.

    For now, I'm certainly enjoying my time off from Oxaliplatin. Chemo is easier. Ice cream is nice.
    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 after 9 rounds of FOLIFRINOX, switched to FOLFIRI due to neuropathy
    Oct. 1, '19 - CA 19-9 44,000
    Oct. 28, '19 - CA 19-9 26,000 (cont. w/ chemo...)
    Houston,TX

  10. #10
    Good luck Legodude !

    Sending positive thoughts and energy your way.

 

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