October 30, 2016 at 4:16 am #81649marionsModerator
Correct, cold sensitivity can be a major problem, but the majority of patients learn to work with it. I recall a posting by Susan Bradan you might find helpful:
Mon, 27 Jul 2015 05:03:12
Re: xeloda and oxiliplatin side effects (4 replies, posted in Chemotherapy)
Darlene, I’ve been on oxaliplatin for treatment for 6 cycles now (every 2 weeks) tomorrow is #7. The cold sensitivity -for me- fades at day 5 following infusion. It starts about 30 min. Into treatment. Feeling/tasting metallic sensations in my mouth. Drinking cold feels very sharp in my throat – like swallowing glass. Touching something from the fridge or freezer feels like you almost stick to the item. And make sure you run water to warm before washing hands, etc. best advice I have is keep room temp juice bottles, water, etc, to drink, and have gloves at the sink, near the fridge, and wear socks around the house and to bed in air conditioning. Keep track of how long the sensitivity lasts. The sensitivity isn’t the same as full blown neuropathy. Keep a sense of humor through it. Know it’s coming and laugh and live through it. I like to visualize it’s freezing my cancer on the inside. And I’m having remarkable shrinkage in my ICC tumors in my liver. (I’m in a trial at Sloan with the HAI pump combined with systemic gem/oxy). I have a 4 year old granddaughter who thinks I turn into Elsa from Frozen during these days. And anything that makes me extra “cool” in her eyes, is worth the physical inconvenience! Email me if you want to. Good luck with the new course- and happy birthday!!
SusanOctober 29, 2016 at 3:25 pm #81650ladonnerParticipant
Thanks, Marion! I do have some slight neuropathy, more in my feet than my hands, and I’ve read that the FOLFOX can have the same effect, probably primarily because of the Oxaliplatin. I did find what I think is a helpful site at:
Seems like an additional side effect with FOLFOX beyond what I’ve had with Gem/Cis is the extreme sensitivity to cold that many people appear to have experienced. Although I understand that everyone’s experience as far as side effects will be different.October 29, 2016 at 4:13 am #81651marionsModerator
ladonner…..This chemo regimen has been around for a long time. FOLFOX is a combination of drugs and described here:
The Oxaliplatin is less harsh than the Cisplatin previously received; however I recall you mentioning neuropathy in your earlier postings. Is that still a problem?
MarionOctober 28, 2016 at 1:08 pm #81648helpformom2016Member
I am sorry about your recent progression.
I dont have personal experience with FolFox… only the Oxaliplatin part of it.
It seems you already have Gem/Cis experience. How well did you tolerate that?
What are your concerns about the FolFox?
Oxaliplatin is a very strong medicine. (but arent they all?)
Tolerance is of course extremely variable and personal. I feel the younger and stronger a person – and their over all health – the better chances they are of recovering after the infusions. So that is something to keep in mind when reading the experiences of others.
My mother is 65 and has done 4 rounds of Gem/Oxaliplatin. It has been 16 days since moms last treatment and she is still too tired to do much of anything. The neuropathy in her hands has prevented her from using her phone much and the cold sensitivity has lingered. Even walking on cold tile floors. She did mouth rinses periodically and ended up with 1 or 2 sores. She was very queezy (but is naturally with any meds) – Taking the nausea meds religiously helps tremendously. Her appetite was non existent. She drank warm Ensure, whey protein shakes, and hamburger patties.
To me though- the fact that your tumor responded so well to treatment sounds hopeful. And a surgical consult is a wonderful thing even to be considered. Its what we all hope for.
I hope you get some responses about 5FU in the coming days that will provide you the information you seek.
I wish you all the best.
MegOctober 27, 2016 at 11:38 pm #9842ladonnerParticipant
Trying to find out some info on this chemo regimen. Learned today that my primary tumor (intrahepatic, previously stated to be unresectable) had grown by 20 percent since April (after shrinking from 11 cm to under 2 cm), which meant that I am now ineligible to continue the trial I was on with a study drug plus gem/cis. The oncologist agreed to schedule a surgical consult for me, although the oncologist does not believe that will be an option, and I am getting signed up for the MATCH trial with a new biopsy to be done sometime in November, but in the meantime the oncologist is wanting me to start a regimen of FOLFOX, so I’m trying to find out what I can about that before next week. By a search I did of the discussion board I am gathering that regimen is considered something to be avoided to at least some extent, but I’m not seeing what the reason might be. Can anyone offer further information or comments on this? Thanks.
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