Pancreatic Cancer Group: Introduce yourself and connect with others

@gamaryanne
Can you give me any tips for my husband , he is starting chemo Friday .

They don't do anything. You order them through Amazon and out them onbefore your treatment. They can't tell which "shoes" and gloves you can wear.

Diagnosed with pancreatic cancer Sept. 9, 2025

No treatment, cancer has already spread to small intestines.

@dyas, thinking of you. How are you and your wife doing?

@jim1234 It has been shown that doing cold therapy using the neoprene booties and mitts has led to preventing chemo induced peripheral neuropathy (CIPN). Most of the comprehensive cancer centers are familiar with the technique and how it provides for a better patient experience and quality of life.

It is very sad when a medical facility-usually small hospitals and regional medical center staff with little experience in treating pancreatic cancer tells a patient based on ignorance they don’t do the procedure. It is not the medical staff that will suffer from CIPN, but the patient and possibly with permanent damage to the peripheral nerves.

This week I am in Philadelphia at the ECOG-ACRIN cancer meetings and I asked many of the pancreatic cancer oncologists in attendance if they let their patients do cold therapy. The response was an overwhelming yes and the reasons given were it works, provides for a better quality of life and a treatment experience where the patient is more likely to complete the prescribed cycles to gain the most benefit from treatment. If I found myself in the situation of being told they don’t do the technique, I’d do it and if I was told it would not be permitted, I would find a treatment center such as an NCI or NPF comprehensive cancer center that understands to purpose and benefit of the technique.

In 2012 when I did treatment with Folfirinox, cold therapy was not yet known in the pancreatic cancer treatment realm. Fortunately I had an oncologist who can think outside the box. Because he was concerned with CIPN that could be permanent, he did my dosing in groups of six starting with full-dose Folfirinox and then the next six were done with just 5-FU. This 3 month alternate dosing break was enough to prevent neuropathy from becoming severe, debilitating and permanent. Still it did not start to improve until 2.5 years after chemo ended and took a full 7.5 years to resolve. Having neuropathy in the feet is not a pleasant experience as those who experienced it. If the treatment facility is going to prevent you from doing something that as a result will negatively impact your quality of life, I would serious give thought to going to another treatment facility focused on providing a higher level of care.

@colleenyoung
Thank you 🙏🏻 so much Colleen. This note will mean so much to Sal. We meet tomorrow with a doctor and a representative from palliative care. The results today are not very supportive. We have so many questions. I would like to keep you updated as we progress.

🙏🏻Mort

Hi to all, my son Marko get a Pancreatic Cancer in June, it was actually discovered on the end of June in Florida. He had a Whipple surgery and right now has a treatment in one of hospitals in Toronto. The worst thing is a stage, they (a doctors) says he has a Adenoma Carcinoma in stage 4. And they are not giving him too much to live, up to year. And they say he is not qualified for trial treatment. Any similar experience?

@stageivsurvivor Thank you for the informative response. I have neuropathy no but get around good and don’t need it worse Going to Froedert tomorrow to check out a NCT. I’ll be bringing it up

@jim1234 Good choice on going to Froedtert to look into them. They have one of the top pancreatic cancer programs in the US. I know several of their surgeons and medical oncologists.

Article on exercise in lessening CIPN
https://pubmed.ncbi.nlm.nih.gov/38559210/