Pancreatic Cancer Group: Introduce yourself and connect with others

I have neuropathy from the oxaliplatin when I was on Folfirinox, it kicked in with the 11th infusion. I am on Gemcitabene/Abraxane now, and during the Abraxane infusion my fingers are kept in ice and my feet are packed in ice, to prevent neuropathy from worsening. The ice seems to be helping as my fingers are slowly getting better.

I have posted frequently on the technique of cold therapy for the prevention of chemo induced peripheral neuropathy. The technique got its start in the colorectal cancer space about 8 years ago after being widely mentioned on the Colontown FaceBook group. From there it moved into breast cancer treatment and within the last few years for pancreatic cancer. It is most effective when started with the first cycle of chemotherapy before platin agents or taxane shave a chance to damage peripheral nerve endings. The last link is to neoprene booties and mitts with cooling gel inserts making the technique easier to tolerate of the 90 minute infusion of oxaliplatin or Abraxane.

NEUROPATHY PREVENTION WHEN TAKING FOLFIRINOX/ICING

LetsWinPC.org feature story on cold therapy
https://letswinpc.org/disease-management/ice-prevent-neuropathy/
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https://www.uspharmacist.com/article/ice-chips-prevent-hyperalgesia-with-oxaliplatin
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/
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https://learn.colontown.org/topic/managing-neuropathy-and-cold-sensitivity/
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https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.e16140
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https://paltown.org/icing/
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https://letswinpc.org/research/more-research-needed-for-neuropathy/
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https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-cold-cap-therapy-can-reduce-hair-loss-caused-by-chemotherapy/
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Link to booties and mitts for cold therapy. https://a.co/d/ipJy8Hq
Two sets of booties/mitts are necessary for the cold to last through the infusion cycle.

I was just diagnosed with IPMN. THE GASTRO GUY WHO BIOPSIED IT SAID I WOULD HAVE SURGERY. THE SURGEON DISAGRRED. WE R STILL WAITING FOR THE RESULTS OF THE LAST TEST BUT HE IS PRETTY SURE HE WANTS TO WAIT AND SEE FOR 6 months.
If/when i have surgery its likely they will take spleen too. Why?
Has anyone had IPMN and can they share their experience. Thank you.

I had Whipple surgery 11/23 when I was 72 years old for an IPMN in the head of my pancreas. I was being treated for an ulcer by my gastro Dr. who insisted there was nothing wrong with my pancreas. I sought a second opinion and the second EUS found the IPMN. When I awoke from the anesthesia, the Dr. that performed the EUS bluntly told me that I would need Whipple surgery (biopsy was inconclusive). I went to University of Penn and sought out a surgeon that gave me the option of monitoring or scheduling the Whipple. I opted for the surgery asap and I have no regrets. I was diagnosed with Colloid Carcinoma with no issues with 36 lymph nodes or the resection. My Gall Bladder was also removed. No chemo was necessary and my 6 month scans have been all clear. My reasoning for removing the IPMN was that it seemed like a ticking time bomb and would eventually lead to PC...no regrets, no issues or side effects....I have to take Creon with my meals, a small consolation for me....this was my personal opinion & option and you have to carefully choose what is best for you.....

Thanks for posting. I got the booties a few weeks ago just in case my new dr decided to just lower the abraxane dosage instead of taking me off it completely. Since my biopsies, recent scans, CEA and CA19-9 have all been normal, lately he took me off abraxane completely to give my body a rest since he said “you are running a marathon and not a race”; trying to keep me healthy until the RM drugs or his vaccine gets approval from FDA. The neuropathy has subsided a bit, but the one in my foot better, but still there. Would it do any good to wear booties like at home or is it just when you are receiving the abraxane?

May 2025. Opted fo palliative treatment only.

Thank you for sharing. My experience was similar to yours, I chose surgery and so far I am recovering, surgery was 12 weeks ago, I continue with pain but drs say it is like that 3 to 6 months after.

Welcome, @barbiebb. What criteria led you to choose palliative care? What treatment are you currently on and what symptoms are being managed? (If you don't mind my asking.)

Removal of the spleen depends the type of surgery you have which depends on where the IPMN is. Whipple for the head of the pancreas does not take the spleen.

What was the latest test the surgeon is waiting on?

Have you had an EUS to compare to the MRCP.

I have an SB- IPMN that they followed for 3 years. EUS in 2022 and again last month. Just now having surgery.

T

All tests are back. No tumor markers. The largest cyst which is on the tail is 2.3cm. There are others on tail and one in middle. Surgeon wants to follow up with mri in 6 mos. Says spleen has lots of blood supply with pancreas and thats the reason it is frequently removed with the tail.
I had EUS FIRST FOLLOWED BY MRI AND OF COURSEW BOTH HAD COORDINATING BLOOD WORK. I HAVE KRAF MUTATION.
(Sorry for caps!).
It’s all precancerous i guess so he chose 6 mo follow up vs 12 mo the radiologist recommended.
I feel like we are just waiting. Which is a bit nerve-wracking. What caused you to make the decision to have surgery.
I have great confidence in the surgeon.