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Replies to "Hi, I was diagnosed on March 21st after going to the ER with Jaundice. What a..."
My suggestion is to have the Whipple Operation as soon as possible! You need all the strength you can get, I have had friends who have been driven down the chemo path to never regain enough strength for the Whipple surgery.
My Whipple was done back in 2013, neither my gastroenterologist or Whipple surgeon gave chemo a second thought & I’m glad they didn’t.
Been looking at stage 1 Pancreatic cancer in the rear view mirror ever since.
Gods Speed..
I did the cold socks and mittens, and ice in the mouth for the first treatment. I don't know that it really did anything. I couldn't do it after that, because my feet and hands were too sensitive to the cold.
This is what worked for me - If after a treatment, your neuropathy is such that you wouldn't want to live with it if it got any worse, that is when you need to stop the oxaliplatin.
I had 12 treatments of chemo before my surgery. After 7 treatments of the fulfirinox, I told my oncologist, I couldn't do any more oxaliplatin unless she reduced the dose to 25% - From the oxaliplatin, I had terrible jaw pain, and the neuropathy was getting worse-I was getting to the point I didn't want either the jaw pain or neuropathy to get worse. She felt I would still have the side effects of the terrible jaw pain I was having with a lowered dose of 25% (of my full dose), so they didn't give me any oxaliplatin for that treatment. When my surgeon found out later, she was not happy-she wanted me to do 12 treatments of fulfirinox, understandably. After my 7th treatment of fulfirinox, my Mayo oncologist took me off fulfirinox (since I had chosen not to take the oxaliplatin), and my last 4 treatments were gem/abraxane.
I had surgery on Feb 15. They found only 2 cancer cells in my tumor and no cancer in my 40 lymph nodes they took out. Now, 8 weeks post-surgery, my neuropathy does not bother me too badly- I am so glad I made the decision to stop the oxaliplatin when I felt like "if this gets any worse, I don't think I could live with it".
On a side note, I think the 4 treatments of gem/abraxane really helped to continue killing the cancer cells and was much easier on my body than the fulfirinox.
Just an additional note - My oncologist said the cold sensitivity from the oxaliplatin would go away. As of now, I still have my cold sensitivity, and have talked with others whose cold sensitivity has not gone away, even after many years.
It depends somewhat on which chemo recipe you're getting. If you're getting Folfirinox, the ingredient Oxaliplatin is pretty notorious for causing both neuropathy and cold sensitivity (two different things). The cold sensitivity usually goes away a few days after treatment. The nerve damage at the root of the peripheral neuropathy may last a bit longer or even become permanent.
The other common Standard of Care regimen is based on Gemcitabine, often combined with Abraxane, Cisplatin, or both. Cisplatin may have some effect on peripheral neuropathy, but only a fraction of what Abraxane can cause. Abraxane and Cisplatin don't seem to cause the same cold sensitivity as Oxaliplatin.
For the record, I had 12 biweekly rounds of Folfirinox before Whipple, and 32 rounds of Gem+Abrax+Cis since Whipple. I got over the Folfirinox neuropathy within 7 months of stopping. Since I'm still on the GAC, I have new neuropathy from the Abraxane, but it's not terrible (yet).
One "major cancer hospital" I know of does offer ice glove and socks during treatment with Abraxane. I don't know if they do the same with Folfirinox. Another member here said her oncologist at a different institution specifically _avoids_ ice with Folfirinox, but didn't have details as to exactly why. I suspect if your nerves are already hypersensitive to cold from the Oxaliplatin, that adding ice may overload them (like tuning your ears to hear a whisper and then lighting a firecracker, or tuning your eyes to see in the dark and then staring into a laser).
However, compression has also been found to be helpful, and a lot more comfortable. What I've done (not consistently) is put extra-tight surgical gloves on my hands when the Abraxane is going in, and keep them on as long as possible afterward. That makes it easier to play with a phone or turn pages of a book than if you're icing your hands. For my feet I wear compression socks for the same interval, but add ice booties over the socks, so the cold sting is muted a bit. These are fine with Abraxane, but you _might_ be better off with compression only if you're getting the Oxaliplatin with Folfirinox.
You could always ask if they can substitute Cisplatin in place of the Oxaliplatin and reduce the neuropathy risk. They'll look at you like you're stupid, but until they provide a good answer why not, it's not a stupid question. 😉
Wishing you the best with your treatment!