Pancreatic Cancer Group: Introduce yourself and connect with others

@ardithbjorge

Dear Ardithbjorge -- As a 70 year old male with unstaged bile duct cancer, in October 2024, I had curative bile duct resection and reattachment surgery at Mayo Rochester by Dr Mark Truty. Six months prior to my surgery I met with Dr. Truty for an initial consult. Very impressed and pleased by the entire experience. Prior to my surgery, I had 10 biweekly chemo treatments and 28 daily (M-F) treatments at the University of Arizona Cancer Center in Tucson. Dan

@demooretucson Thank you for taking the time to reply. I am sorry for what you and your wife have had to go through. My mom has already said she isn't interested in chemo or radiation treatments. We just don't understand why this is all happening. She has lead such a wonderful life and never smoked or drank and always took care of herself and others. Life feels very unfair right now.

@jim1234

Can't speak for your Folfirinox treatment or dosages but for my 90 lb wife (was 125) it has been very difficult to tolerate, She is sick for days afterward. This could be the stage 4 cancer advancing, the Folfirinox, or both. Each patient tolerates this differently. Her body revolted after treatment one, then each treatment became easier to tolerate but #11 has been very difficult.

@reme51

You might look into NanoKnife. If the tumor is confined to the Pancreas my understanding is that it can be ablated without harm to the arteries.

I was diagnosed 2 years ago, did folfirinox, then radiation with the MR Linac then monitored with CTs for nearly a year with no mets noticed, though now have a met on my right ascending colon - not the usual for pancan so several CT readers missed it. Now on gemcidabine abraxane every other week - 3 so far, along with 4 high dose C infusions. These were to be 3/week but the supply has suddenly dried up. So far I've been reading up here on reactions to gem + abraxane to see what the future may bring.

@jim1234 Palliative. I think all stage 4 pancreas is. Just want to make it as long as I can. Looking at treatment soon. Getting port installed Friday. If I stay with Prohealth it's Folfininox. Otherwise I'm seeing if I can get into this trial quick enough because I know I can't wait. The trial is Gemcitabine and Nab-paclitaxel for chemo. Along with Nab-paclitaxel and Motixafortide as immunotherapy drugs. Actually not sure what's best for me. They explain both but neither one is an answer you want to hear

I was diagnosed with Adenocarcinoma stage 1a September 2024. I had distal Pancreatectomy and removal of spleen at that time. My chemo started in November and due to severe side effects of Folfox I only got through 6 of the 12 treatments ordered. I went back for scans on October 12th 25 and the cancer has spread to Omentum. I am having appointment with oncology about starting a new chemo regimen. I am very scared and sad for my family.

@jim1234
I am thinking they want me to start Gemcitabine with another chemo agent. Trying to stay positive as I see many success stories of people being around 10 years after stage 4 diagnosis!

@suzanneuhc1
Make sure they add abraxane to your chemo regimen. Gem by itself will not do the trick. Make sure you order the mittens and booties with iced packs and out them in about 10 minutes before they administer the abraxane. This will help decrease effects from neuropathy in the feet and hands. You can also get it in your mouth (burning mouth) which I got during this year's administration of gem and abraxane. It's not that bad - everything not cold just tastes like cardboard so I'll lose some of those extra pounds I packed on in anticipation of weight loss from pancreatic cancer.

@mnewland99 when I talked to Prohealth about booties and mutt they flat out told me “we don’t do that here”. Trying to get in for a clinical trial at Froedert. Have appointment with them. So is it hard to handle cold feet and hands?