Rare Pan Cancer / Mucinous....does anyone have experiences with this?

Correction to treatment. 8 folfirinox treatments. Then, did two folfirinox (without the oxyp). I said the GA - not on that yet. That is possibly next option. Sorry

@cyndi1958 Hi and welcome to Mayo Connect. Sorry to hear about your husband's diagnosis. I believe that pancreatic mucinous cancer is typically an adenocarcinoma. Is that type of pancreatic cancer that your husband has? How is he dealing with the chemo? Is there a long term treatment plan for your husband at this point?

Mucinous pancreatic cancer is relatively uncommon, so it's understandable that you're having trouble finding information or connecting with others who have the same diagnosis. The fact that he had 8 treatments of FOLFIRINOX and his disease was stable is encouraging. Stable disease is a positive response to treatment.

The "GA" treatments are most likely Gemcitabine and Abraxane (nab-paclitaxel), which is another standard treatment for pancreatic cancer. Hopefully, Monday's scan will show that it is continuing to control the disease.

One thing I would encourage is getting a second opinion at a high-volume pancreatic cancer center if you haven't already. There are only a limited number of centers that specialize in pancreatic cancer, and their expertise can make a real difference. Even if you continue treatment close to home, having specialists review the case can provide reassurance and sometimes additional options, including clinical trials.

So sorry to hear of your husband's diagnosis. At the risk of repeating the prior post, with such a rare type of pancreatic cancer, in my opinion it is important to connect with a medical facility that invests in the treatment of rare cancers. At a minimum seek out a second opinion there. My husband has acinar cell adenocarcinoma (about 1% of pancreatic cancer) and is also 8 rounds of chemo into treatment with scan next week. We are at MD Anderson. Please let me know how the scan goes. I will be thinking of you.

@cyndi1958 My Husband was also diagnosed with Stage 4 Pancreatic Cancer with metastasis
to lymph nodes and Lungs. He had lost quite a bit of weight and had no appetite so they started doing testing . After 6 Months of testing the first Oncologist said it was not cancer. Our primary Doctor recommended that we go to a Surgeon that specializes in Pancreatic Surgery at Jefferson University Hospital in Philadelphia. He also did testing with no conclusive results but gave us the option of Surgery to see what was going on. All of the tests were showing a lot of inflammation but his Ca19-9 levels kept going up. He ended up doing a Distal Pancreatomy. there was a large tumor in the Body and Tail of the Pancreas. They also removed his Spleen and 20 Lymph Nodes. Cancer was found in 14 of the Lymph Nodes.
With further testing and Biopsies , Cancer was found in his lungs.
Other than the Surgery, he has had no treatment. He never fully recovered enough from the surgery and was just not strong enough to handle Chemo.
Surgery was in July 2024 and as of April 2026, it was still not in his Liver. He went into Hospice Care in April so he has had no further testing.
I also have never heard of anyone else with metastasis to the Lungs and not to the Liver. Cancer is all through is stomach now.

My husband's cancer went to lungs, bones, and lymph nodes from pancreas. First indication for him was severe back pain (bones) so no one even looked for cancer. We just assumed he had pulled a muscle or did something to his back when skiing or kayaking. And when they did look further ... they treated him for lung cancer as that was more likely to have bone mets. And radiation on the bones in his upper spine. Long story short, it was a year before he was correctly diagnosed as having pancreatic cancer. And it was already at stage 4 when he first had the back pain. He did 12 rounds of folfironox, but the chemo was rough towards the end of the 12, so was on a lower maintenance schedule which allowed him to recover some strength. And he did feel better for a while. Had a second opinion at a more specialized cancer hospital, and they concurred with all that was being done. He was next started on gem/abrax which unfortunately did not work for him. His death was about 2.5 years after the back pain so I'm not sure how long he had actually had cancer at that point. I'm not sure if they had correctly diagnosed the back pain that it would have made much difference since it was so widely spread at that point already. We'll never know if delaying treatment for a year made any difference. He was to next start an experimental drug, but unfortunately in his last month things went downhill quickly and he was never able to start that next type of treatment.
Wishing you the best. It is hard to find all the information on this cancer which is why I kept coming back to this website discussion because people here had helpful suggestions. One thing I would suggest, if your husband already isn't doing it, is to start the feet/hand ice treatment during chemo early on. Dan did not and his neuropathy got so extreme that walking became an issue at the end.
One comment on the gem/abrax. Dan immediately lost all his hair. ... including nose hair... and because of the lung involvement he found his nose dripped all the time because there was no nose hair to catch it. Not a huge issue, but something we had not heard of or expected.
Good luck to you and your husband both.

In dealing with pancreatic cancer, it is important to advocate for oneself. Oncologists will adhere to the protocols used at their institution and don’t deviate unless they happen to de conducting clinical trials. It is up to the patient to inform themselves of other options that may be available such as searching for clinical trials or treatment techniques to ablate tumors.

Precision Medicine is the important point here, not that that the cancer is a rare type. I had the rare PACC type but that wasn’t what was important. Knowing what my genetics and tumor genomics was in driving my cancer was the key to treatment. That is what determined using a specific chemo regimen and this is referred to as Targeted Therapy.

What you need to find out is what gene mutation is driving this mucinous form of cancer in the pancreas. That is key to matching to a clinical trials. If the tumor genomics also indicates the presence of actionable biomarkers such as TMB-H, MSI-H, dMMR, PD1/PD-L1, then there may be an immunotherapy that is standard of care or as a clinical trial.

Advocacy involves taking the initiative is looking for multiple opinions at other National Cancer Institute Center ps of Excellence and National Pncreas Center recommended Comprehensive Cancer Centers to see what is available. Your current oncologist is not going to do this. You have to be proactive and take the initiate. Although I was initially treated at a top NCI Center of Excellence, I had no qualms about seeking multiple opinions. I was dealing with stage IV disease in my liver, perineural invasion and a host of other bad indicators. Thanks to my being assertive in a respectful manner, I got the advanced treatment I needed to become a 14 year survivor and achieve clinical cure.

Use the following links to find NCI and NOF Centers to see what their recommendations are:

CENTERS OF EXCELLENCE
https://www.cancer.gov/research/infrastructure/cancer-centers/find
https://pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
PHYSICIAN FINDER PANCREATIC CANCER SPECIALISTS
https://letswinpc.org/finding-pancreatic-cancer-specialist/
NCCN GUIDELINES
https://www.nccn.org/patients/guidelines/content/PDF/pancreatic-patient.pdf