Pancreatic Cancer Group: Introduce yourself and connect with others

Hello,

I just signed up for this group today. My husband was diagnosed with stage 4 pancreatic cancer of the tail of the pancreas in February 2024. He was a smoker about 15 years ago. He has blood clots in his lungs and recent plural effusion.

This month he started having ascites, and has needed paracentisis 4 times this month. He is severely constipated and between this, the ascites, dry heaving and throwing up, the complete lack of energy he is in very poor shape and does not want to eat. He has lost at least 30 pounds. He basically is sleeping all day.

He is working on a 3rd chemo regime. That he is likely to stop after the 3rd round because he is so miserable. After an ER visit Thursday, he is working on an intense program with numerous meds to try to get his bowels moving. It is the number 1 issue for him at the moment making him feel bloated and extremely uncomfortable which elevates into severe back and side pain.

Morphine has been helpful. He has fast acting. We can not find slow acting or any morphine to replace the fast acting prescription he is running out of. Apparently there is a morphine shortage and all manufactures are not producing the product anymore. Is there a reasonable substitute? Does Tramadol work? The morphine and chemo just intensify the constipation.

We tried for a clinical trial with MD Anderson in Texas, but they won't take him for 6 months because he we recently prescribed blood thinners for the blood clots in his lungs and his albumin lever needs to get to 3.0. It is 2.3 now. Just trying to figure out ways to address all these issues.

His situation seems to be too demanding for the cancer center that is 2 hours away. Thinking of looking for an internist / oncologist that may be more helpful sifting through these issues and getting them addressed. At this point we are thinking it may be time for hospice. He may be too far down the line to help. Not sure.

This maybe too long an introduction. Any suggestions would be helpful.

Thank you,

Laurie A

I hesitate to post here because I’m one of those people who found pancreatic cysts when imaging for another issue. They are incredibly small, yet the radiologist thought they “reflected” IPMN, branch duct, report below. So maybe they’ll just hang there until the end of time.
But, I’d feel really dumb in a few years if . . .

A discussion with my endocrinologist led to a recommendation to a local gastroenterologist with pancreatic cancer experience. I am a currently in survivorship at MD Anderson for BC. And would definitely go there for care, but it’s 3 1/2 hr away, so thought I’d have Baylor Scott & White do next early scan (if they will). I did have an abdominal CT scan by MDA in 2024 checking for uterine, or other, lower ab growths, found adrenal issue. Nothing reported on pancreas at that time, although CT might not image something this small?

My hope is the gastroenterologist that I see in about 6 months will order a MRI-MRCP in the spring. That’s about one year from first MRI.

If it were you, with the experiences you’ve had, would you do it this way?

Radiologist report, MRI June 2025:
Tiny cystic pancreatic foci which could reflect sidebranch IPMN. No pancreatic ductal dilatation. Surveillance imaging may be considered with follow-up MRI/MRCP in 6-12 months.
Narrative:
Pancreas: P tiny cystic foci measuring 2-3 mm located along the course of the main duct in the body and tail. Pancreatic divisum morphology. No ductal dilatation.

Wow that’s great to hear. Did he get it from a dispensary?

Might have sent a partial list for dosing. Here's the whole thing again. B- Complex no dosage given, but be sure it is ""super" B-complex or it won't have B-12 in it.
L-Glutamine 2,000 MG. 2 x a day.
Alpha Lipoic acid 600 MG. a day.
The Super B complex you can get from a drug store. Alpha Lipolic drug store or Health Food store, L- Glutamine in capsule form (specified) Health Food Sore only. At least in my rural area. Hope it helps.

Can u share dosage on each? Husband is really struggling with the neuropathy.

Yep. I was on the gemcitabine/abraxane for my last three chemo treatments and they did a number on me and my neuropathy. It got quickly worse during and after my treatments which were scheduled every three weeks apart. I’ve now been off all chemo for about seven weeks now and can report that I’m feeling a small amount of improvement but not enough to say I’m comfortable yet by any means. Taking 1800 units of gabapentin daily but I’m not sure it really does anything. Time will probably be the best healing process for it.

I am 75 and was diagnosed with stage 4 pancreatic cancer in September 2024. I had the block in Octotober and they said it may wear off. So far so good. It took that terrible back pain away and I also wear a 12mg Fentanyl patch. I was on chemos gemsar and abraxane. They took me off the abraxane because of the awful after effects. They gave me a brake from gemsar because my Magnesium was very low, my glucose was 231 and my platelets were 58. The low for platelets is 150. I finally went back to chemo last Thursday, with a lower dose of chemo and have this week off but they want me to come in to check on my platelets. My Tumor was 7.2 cm and shrank .67 inches since October but my cancer is wrapped around the celiac axis and the body plus the tail. Onc. said I am inoperable and will not survive this disease but will not tell me how long I have. Good luck to you and I appreciate your decision not to have chemo because it wreaks havic with your body.

I am a 92 yr. Old woman and was diagnosed with Stage 4 pancreatic cancer 4 months ago, with a prognosis of 6 months to a year left. I chose not to have chemo because of my age. I do not want to go through the pain and suffering of chemo to get an extra 3 months, if I am lucky. Nor do I want to put my family through that. A CAT scan last week showed that the tumor had doubled in size and is wrapping around the artery to my left kidney and spleen. I have lived a good and long life and want to leave this earth with dignity. I am going to have a Neurolytic Celiac Plexus Block this week to hopefully relieve some of the pain and discomfort I am starting to have. Have any of you had this procedure, which is done with an endoscopy? I will let you know hos the Celiac Block goes.👍

Not sure about that. I've had my Stent in over a year and just talked to a specialist and was told technically they have no expiration. Of course the initial plastic ones need to be replaced with metal within 3 months. Anyone out there have a metal stent that's been in for year(s) without being replaced?

My husband had Distal Surgery last July 2024 and could not eat. He had lost over 40 lbs and still losing. Someone at work mentioned RSO to me so I asked Oncologist and she said she was
a big fan. He started taking that and it was amazing. He has gained back 30 lbs so far.