Pancreatic Cancer Group: Introduce yourself and connect with others

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.

Thanks so much for your replies. I didn't have any big issues after Chemo #1 (just yesterday), and I know there's no way to predict what side effects will hit me versus other people, but it sounds like (if done properly?) the cold therapy will be worth trying (no harm done if I can tolerate the cold), so I'm getting the cold therapy footies & gloves and ice packs and going to try it for 2nd round while the oxaliplatin is going in...more for hopes of long-lasting neuropathy avoided more than anything else.
Wish me luck?!

I have been diagnosed with stage 4 pancreatic cancer that has metastasized to my lung, bones and liver. My oncologist has stated that due to my comorbidities (severe anemia, heart disease and neuropathy, non-diabetic) that to try chemo would cause more problems then it would help. I have contacted a local hospital about a clinical trial that is in phase 2 NCT05254171 by Panbela Technology.
My question is, has anyone had success with a clinical trial with similar issues as mine?

My wife is 70 years of age and was diagnosed with stage 3 pancreatic cancer in Oct 2023. Since she has undergone 4 months of FOLFIRINOX. Following this treatment she was moved to GEMCITABINE. However, treatment was stopped after two sessions due to a severe allergic reaction. She stared 3 weeks chemo/radiation this week. The tumor is at the head of the pancreas and has encased several blood vessels. Surgery is beyond Whipple, requiring the complete removal of pancreas, along with spleen, gallbladder, etc. most recent scans have shown a shrinking tumor, reduced avidity and normal blood markers. Question: Given the complexity and recovery challenges of surgery, is it common for patients in this situation to opt out of surgery? If so, what are the alternatives to consider?

Hi there Marcia,
I had tumor in the tail, so I had distal surgery which included removal of spleen in October 2022 with some complications from surgery. Hepatic and celiac arteries showed soft tissue area in December,but it was regarded as scar tissue at that time. I began chemo in January or delayed due to my complications. 12 rounds fulfirnox but no radiation. In November 2023 my CA19-9 starting climbing again at a quadrupling rate. Drs finally did a MRI and EUS-__ERCP in December and found a couple of lesions in my liver and my new “suspicious” masses in my abdominal peritoneun and by the way these areas didn’t show up with uptake on my PET scan. GI dr who did EUS said samples from peritoneum and hepatic artery difficult to get but based on the visual testing of it he suspects those are cancerous, as well as my new UCLA (I switched from Hoag). So I continue on GAC until it’s no longer effective. My tumor tissue currently being tested for CLD-18 protein too see if I will qualify for that trial it’s just something I’ll have ready to go in my back pocket when GAC stops working. Good luck to you on your PanCAN journey. What do you wear on your head now?

@drmch
Have you spoken to more than one surgeon?
More than one oncologist?
Everyone’s case is different, but there are more than two chemo concoctions now and many undergo this surgery once chemo has shrunk tumors and in many cases caused necrosis in areas. Once it is in your blood stream you must stabilize the situation prior to surgery.
I am a 29 month stage IV survivor. I have gall bladder, spleen, two major nodes of my liver and portion of my pancreas removed. This only occurred once the chemo had things “under control”. Please schedule for more than one opinion. I consult with various physicians across the country and learn something new from each.
May God give you wisdom and faith to help your wife fight!

Thank you for your reply. Yes, we have spoken to two surgeons and are working with two oncology teams - Mayo and Minneapolis. What is your age and gender? What was the recovery period like after surgery? Have you been able to resume your daily activities after 29 months?

Folks, I am a two time cancer person, breast and thyroid. I was diagnosed last month with 1.3 cm lesions in the pancreas. Luckily it is not considered cancer, yet. I'm told protocol is a follow-up MRI in 6 months. I'm trying to find out from my doc if the protocol should be anything different given my history. Hard to get answers from busy people. Advice anyone? Thanks.

You are being evaluated and receiving care and advice from a pancreatic cancer center of excellence?

Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my pancreas, and advised by Dr. to get a Whipple procedure as the cyst has a high probability of turning cancerous. Two questions I have as I consider the Whipple procedure, Is an Open Whipple or a Laparoscopic Whipple better? What are some of the most common permanent conditions after Whipple? Thank you for your feedback!