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Thread: Changed protocol to GEMOX - 1st signs of neuropathy already...

  1. #1
    Senior User
    Join Date
    Apr 2014
    Posts
    147

    Changed protocol to GEMOX - 1st signs of neuropathy already...

    Hi All,

    Yesterday I started new protocol - gemzar+ oxaliplatin every 2 weeks). I was warned that my hands, feet and back of throat would be sensitive to cold for a few days (going away afterwards, but with the accumulation eventually staying for longer periods), but I was still taken by surprise when I got home from the hospital and removed my shoes... Even with socks on I felt like I was walking on spiky dry ice... Fingers started shortly after that, and when I went to drink water, it felt like something was scratching my throat. Not fun!

    For those of you experienced with neuropathy, any suggestions to minimize the symptoms would be welcome!

    Thanks in advance.
    Fall 2013: cyst found on tail of pancreas
    Dec 2013: puncture biopsy - diagnosis mucinous cystadenoma
    Jan 2014: distal pancreatectomy by laparoscopy - spleen preserved
    Feb 2014: path report: 3mm adenocarcenoma inside 9cm cyst, T1N0MXR0
    Apr 2014: Started Gemzar (6 month protocol)
    Sept 2014: Final chemo. Scan NED, markers ca19-9=8.1, cea=0.7
    Jan 2015 -Jun 2016: NED
    Jan 2017: 14cm cyst on ovary, ca 19-9=138, cea=0.6, ca 125=48
    Feb 2017: Hysterectomy, ovariectomie, omentectomy - mucinous adenocarcinoma cyst with spread to omentum. Ovaries, uterus, tubes clean
    Mar 2017: start gemzar/xeloda protocol, ca19-9 =370, cea and ca125 normal
    June 2017: scan shows 2 spots on liver and maybe 2 (millimetric) on lung. ca19-9=197
    Sept 2017: ca19-9=14 , spots on liver stable or decreased, but spots on lung are a bit bigger.
    Dec 2017: ca19-9=15, millimetric growth of 2 lung mets, possible millimetric spots on liver. GEMOX starting Jan 2018

  2. #2
    Experienced User
    Join Date
    May 2017
    Posts
    95
    Deb
    I am getting the oxaliplatin as part of my Folfirinox regimen. The cold sensation for me has been inconsistent and most of the time minor. I have only experienced it in my hands and mouth. The best thing I found for the hands is a cup of hot tea! or just some hot water. It is the weirdest thing to be sure. A friend of mine actually gave me a mit that you put in the microwave to warm and slide your hand in it. It is awesome. she got it on Amazon. You only need to heat it fro like 15 seconds in the microwave. I will be starting my sixth cycle this Wednesday and all I can say is that each cycles aftermath has been different. A new and exciting adventure everyday!
    eds
    1/8/17 Diagnosed with Operable PanCan
    1/31/17 Started Immune therapy clinical Trial at Hopkins
    2/13/17 Whipple Surgery
    5/8/17 Completed SBRT treatment at Hopkins
    5/16/17 Started first cycle of Chemo Gemcitabine and Xeloda
    6/1/17 Admitted back into Hopkins with Gas in Abdomen from perforated bowel
    7/5/17 After a week in the hospital and a months rest delay Chemo for 3 months
    7/21/17 Quarterly CT Scan shows no evidence of Recurrence
    9/29/17 Quarterly CT Scan shows local recurrence of growth on the pancreas body
    10/11/17 Begin Folfirinox regimen for the foreseeable future
    12/27/17 After 4 cycles of Folfirinox Quarterly CT shows no spread of cancer and marginal shrinkage of tumor
    3/19/18 After 5 more cycles of Folfirinox my Quarterly CT Scan showed no spread.
    4/11/18 CA19-9 down from 4800 in December to 384
    6/8/18 PET Scan shows no mets, still local to pancreas. CA19-9 down to 165

  3. #3
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Posts
    2,161
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    7
    During our recent twitter chat about symptoms and neuropathy, duloxetine/Cymbalta came up as a treatment, as did acupuncture. I asked about using cooling of the area (like some use cool caps to halt hair loss), but one doctor said it would not help and another said it only increase the pain.
    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 - Radiation+Xeloda, 25 days in 5 weeks
    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 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  4. #4
    Senior User
    Join Date
    Apr 2014
    Posts
    147
    Thanks I'll ask about duplicative next week. Maybe less dramatic I read on another forum (colon cancer where oxaliplatin seems to be used a lot) that magnesium sulphite can help.


    And I'll look for that hand warmer on Amazon !
    Fall 2013: cyst found on tail of pancreas
    Dec 2013: puncture biopsy - diagnosis mucinous cystadenoma
    Jan 2014: distal pancreatectomy by laparoscopy - spleen preserved
    Feb 2014: path report: 3mm adenocarcenoma inside 9cm cyst, T1N0MXR0
    Apr 2014: Started Gemzar (6 month protocol)
    Sept 2014: Final chemo. Scan NED, markers ca19-9=8.1, cea=0.7
    Jan 2015 -Jun 2016: NED
    Jan 2017: 14cm cyst on ovary, ca 19-9=138, cea=0.6, ca 125=48
    Feb 2017: Hysterectomy, ovariectomie, omentectomy - mucinous adenocarcinoma cyst with spread to omentum. Ovaries, uterus, tubes clean
    Mar 2017: start gemzar/xeloda protocol, ca19-9 =370, cea and ca125 normal
    June 2017: scan shows 2 spots on liver and maybe 2 (millimetric) on lung. ca19-9=197
    Sept 2017: ca19-9=14 , spots on liver stable or decreased, but spots on lung are a bit bigger.
    Dec 2017: ca19-9=15, millimetric growth of 2 lung mets, possible millimetric spots on liver. GEMOX starting Jan 2018

  5. #5
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Posts
    225
    I recently heard of Glutamine. I don't have personal experience but you can check Memorial Sloan Kettering:
    https://www.mskcc.org/cancer-care/in...erbs/glutamine

    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 tiny lung nodules - NED
    Feb 2018 Stable lung nodules - NED
    May 2018. Lung nodules are growing; possibly mets, but still considered NED

  6. #6
    Senior User
    Join Date
    Apr 2014
    Posts
    147
    Thanks Brigitte. I'll add it to my list to discuss next week with my Beaujon team.
    Fall 2013: cyst found on tail of pancreas
    Dec 2013: puncture biopsy - diagnosis mucinous cystadenoma
    Jan 2014: distal pancreatectomy by laparoscopy - spleen preserved
    Feb 2014: path report: 3mm adenocarcenoma inside 9cm cyst, T1N0MXR0
    Apr 2014: Started Gemzar (6 month protocol)
    Sept 2014: Final chemo. Scan NED, markers ca19-9=8.1, cea=0.7
    Jan 2015 -Jun 2016: NED
    Jan 2017: 14cm cyst on ovary, ca 19-9=138, cea=0.6, ca 125=48
    Feb 2017: Hysterectomy, ovariectomie, omentectomy - mucinous adenocarcinoma cyst with spread to omentum. Ovaries, uterus, tubes clean
    Mar 2017: start gemzar/xeloda protocol, ca19-9 =370, cea and ca125 normal
    June 2017: scan shows 2 spots on liver and maybe 2 (millimetric) on lung. ca19-9=197
    Sept 2017: ca19-9=14 , spots on liver stable or decreased, but spots on lung are a bit bigger.
    Dec 2017: ca19-9=15, millimetric growth of 2 lung mets, possible millimetric spots on liver. GEMOX starting Jan 2018

  7. #7
    Hi, Deb. May I ask, was the cyst on the ovary a new cancer, or mets from the pancreatic cancer?
    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

  8. #8
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Posts
    225
    In addition to help with neuropathy, Glutamine seems to help with mucositis (mouth sores). In his book, Pascal Hammel (your oncologist, if remember correctly), had severe mucositis during his own treatment... I suppose he will be very understanding


    On another topic, I'm reading more and more about intermittent-fasting diet or fasting-mimicking diet (Dr. Valter Longo) to help with chemotherapy efficacy, with chemotherapy side-effects, and with prevention of recurrences. I usually am very careful with this type of advice, but there seems to be more than just superficial research. There are a few clinical trials for prostate cancer and breast cancer in the US and in Germany. I would not try it without careful consideration and agreement with my doctors, but I am interested in learning more. Has anybody heard about it?
    __________________________________________________ ___________________
    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 tiny lung nodules - NED
    Feb 2018 Stable lung nodules - NED
    May 2018. Lung nodules are growing; possibly mets, but still considered NED

  9. #9
    Senior User
    Join Date
    Apr 2014
    Posts
    147
    Brigitte, I think I saw that Christine is doing the diet to help with side effects... I'd also like to hear more.

    Jackie, I answered you in on but the basic answer is "probably". They were identical but can't say 100% if the ovarian cyst was secondary or a new occurrence of same phenomena (both mucinous adenocarcinoma cysts, both with ovarian stroma)
    Fall 2013: cyst found on tail of pancreas
    Dec 2013: puncture biopsy - diagnosis mucinous cystadenoma
    Jan 2014: distal pancreatectomy by laparoscopy - spleen preserved
    Feb 2014: path report: 3mm adenocarcenoma inside 9cm cyst, T1N0MXR0
    Apr 2014: Started Gemzar (6 month protocol)
    Sept 2014: Final chemo. Scan NED, markers ca19-9=8.1, cea=0.7
    Jan 2015 -Jun 2016: NED
    Jan 2017: 14cm cyst on ovary, ca 19-9=138, cea=0.6, ca 125=48
    Feb 2017: Hysterectomy, ovariectomie, omentectomy - mucinous adenocarcinoma cyst with spread to omentum. Ovaries, uterus, tubes clean
    Mar 2017: start gemzar/xeloda protocol, ca19-9 =370, cea and ca125 normal
    June 2017: scan shows 2 spots on liver and maybe 2 (millimetric) on lung. ca19-9=197
    Sept 2017: ca19-9=14 , spots on liver stable or decreased, but spots on lung are a bit bigger.
    Dec 2017: ca19-9=15, millimetric growth of 2 lung mets, possible millimetric spots on liver. GEMOX starting Jan 2018

  10. #10
    Moderator Senior User BrigitteM's Avatar
    Join Date
    Sep 2016
    Posts
    225
    Thanks! I'm looking forward to knowing how your visit goes this week. 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 tiny lung nodules - NED
    Feb 2018 Stable lung nodules - NED
    May 2018. Lung nodules are growing; possibly mets, but still considered NED

 

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