Pancreatic Cancer Group: Introduce yourself and connect with others

@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!

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?

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?

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?

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?!

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.

I did the cold socks and mittens, and ice in the mouth for the first treatment. I don't know that it really did anything. I couldn't do it after that, because my feet and hands were too sensitive to the cold.
This is what worked for me - If after a treatment, your neuropathy is such that you wouldn't want to live with it if it got any worse, that is when you need to stop the oxaliplatin.
I had 12 treatments of chemo before my surgery. After 7 treatments of the fulfirinox, I told my oncologist, I couldn't do any more oxaliplatin unless she reduced the dose to 25% - From the oxaliplatin, I had terrible jaw pain, and the neuropathy was getting worse-I was getting to the point I didn't want either the jaw pain or neuropathy to get worse. She felt I would still have the side effects of the terrible jaw pain I was having with a lowered dose of 25% (of my full dose), so they didn't give me any oxaliplatin for that treatment. When my surgeon found out later, she was not happy-she wanted me to do 12 treatments of fulfirinox, understandably. After my 7th treatment of fulfirinox, my Mayo oncologist took me off fulfirinox (since I had chosen not to take the oxaliplatin), and my last 4 treatments were gem/abraxane.
I had surgery on Feb 15. They found only 2 cancer cells in my tumor and no cancer in my 40 lymph nodes they took out. Now, 8 weeks post-surgery, my neuropathy does not bother me too badly- I am so glad I made the decision to stop the oxaliplatin when I felt like "if this gets any worse, I don't think I could live with it".
On a side note, I think the 4 treatments of gem/abraxane really helped to continue killing the cancer cells and was much easier on my body than the fulfirinox.

I fully understand what you are saying. I have scarves from the past 50 years that I thought I would use. Alas, my scarf tying ability is severely lacking :). Tried to post some photos but they only liked my bald one & that is not so much fun for progression. Am not that computer savvy to make the photos friendlier 🙁 It is hard to find a hair stylist that will "trim" a wig. Found a really nice local lady & she did okay but not my favorite. Do check out Paula Young & you will not want for mail 😉

It’s weird how I’ve been buying scarves over last few years so I have sins pretty ones. I got a wig on Amazon for $25 that looks weird but I wear it sometimes. People say it looks good but they might be trying to be nice.

rbaum,

I am so sorry. It seems like you and she are caught between tough choices because of her age and frailty.

While my sister was younger, she too had extenuating circumstances (you can read my many posts on her journey). She had back surgery due to a fall, and in spite of various treatments and meds, continuing back pain. The initial pain could have been from the pancreatic cancer tumor - just don't know, and they never tested - had I known then what I know now it would have been easy to insist on the very quick CA 19-9 blood test. If the pain had been from the tumor vs the fall, she would have had a 6 month head start.

During her back fusion surgery recovery - still using a walker, but not making much progress - we noted she was jaundiced. This started the pancan assessment, they quickly found the tumor, confirmed with biopsy, installed biliary stent. She was at Mayo Rochester within a few days,

I tried to make her stay in Rochester, but she wanted to be with her cats. So, she did Folfirinox chemo at home, flying back and forth to Rochester three times for scans and assessments. Her mobility never improved, her back didn't hurt, but she was never healthy.

By the time she had finished F chemo, and five weeks of chemo enhanced radiation (directed by Mayo), she presented with ascites - even though Mayo was aware and had discussions with her oncologist, they still insisted she return. Once there, the usual scans - this time confirming metastasis, and with ascites no chance of surgery.

She returned home, attempted to restart chemo, but was quickly hospitalized due to her response. Recovery facility for a few days following the hospital, then palliative care and then in-home hospice.

Lessons learned:
- get into a pancan center of excellence
- REMAIN at the pancan center of excellence (if you can commute daily for chemo/radiation, fine - if not, then move there - returning home for chemo and care is NOT the best course of action IMO).
- knowing what I know now, my sense is that the best thing to do might have been to have Whipple first, then recovery, then chemo - at Mayo. I know this might not have changed the outcome, but it might have been - in hindsight- advisable.