Pancreatic Cancer Group: Introduce yourself and connect with others

I'm sorry you have had such a struggle, both with pain and with the knowledge that it can't be cured.

I start chemo and a clinical trial next week. I am stage 4 metastatic to liver and surrounding lymph nodes. I had pain at first and have been living pain free for about 6 weeks. There is no reason for it, but I take every day like this as a gift.

I asked my doctor the same question as to how long I have. She said it is a very individual answer and would not give me a timeline other than to say 6 months if I did nothing. At first, I was a bit miffed that I didn't get a number. But, now having had time to reflect on it, I think I like it this way. Instead of being given a number to aim for, I now have the choice to go on as far as I want.

Having lost a nephew to a car accident, I can say that while it won't be painless for me and for my family, I have the luxury of making sure I am right in this world and everyone in it. I need to be generous with forgiveness and on asking to be forgiven. I watched the biography of Michael J. Fox and a quote has always stuck with me, "With gratitude, optimism is sustainable". I choose to be grateful for as much as I can every day.

I hope this doesn't sound preachy. I maybe have no basis for posting as I have not gone through the chemo yet. I know what my pancan sponsor told me and that was that those that do the best get up even when every part of their body says stay down. I want to be here to hold future grandkids! I wish you only the best. Brad

I'm sorry you have had such a struggle, both with pain and with the knowledge that it can't be cured.

I start chemo and a clinical trial next week. I am stage 4 metastatic to liver and surrounding lymph nodes. I had pain at first and have been living pain free for about 6 weeks. There is no reason for it, but I take every day like this as a gift.

I asked my doctor the same question as to how long I have. She said it is a very individual answer and would not give me a timeline other than to say 6 months if I did nothing. At first, I was a bit miffed that I didn't get a number. But, now having had time to reflect on it, I think I like it this way. Instead of being given a number to aim for, I now have the choice to go on as far as I want.

Having lost a nephew to a car accident, I can say that while it won't be painless for me and for my family, I have the luxury of making sure I am right in this world and everyone in it. I need to be generous with forgiveness and on asking to be forgiven. I watched the biography of Michael J. Fox and a quote has always stuck with me, "With gratitude, optimism is sustainable". I choose to be grateful for as much as I can every day.

I hope this doesn't sound preachy. I maybe have no basis for posting as I have not gone through the chemo yet. I know what my pancan sponsor told me and that was that those that do the best get up even when every part of their body says stay down. I want to be here to hold future grandkids! I wish you only the best. Brad

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.

Hi. 41f here. Diagnosed stage 3 malignant pancreatic neuroendecrine tumor with nodal positivity (found positive in 3/15 lymph nodes) in November 2024. Had a modified whipple procedure (my gallbladder was left in) in December 2024. Was found because I had gone to ER complaining of pain in my upper abdomen and fatigue in Oct. Pancreatic levels were slightly elevated, but not enough so to be considered pancreatitis. Was sent home on a clear liquid diet for 3 days and told to schedule a follow up with my primary. I'm a workaholic so didn't schedule a follow up (not realizing how serious this was). Wound up back in the ER jaundiced a month later where they discovered a mass in my pancreas. Ended up being a functioning neuroendecrine tumor 2.5cm x 2.6cm on the head of the pancreas abutting the portal vein. Didn't really understand the surgery I was having until after it was done. Chemo was never even discussed as an option for neoadjuvant therapy or at all. I still haven't seen the reports from my surgery and don't know a lot of the numbers and things I'm seeing others discuss here. The first month after my surgery I was miserable and in excruciating pain with bowel movements. I still have a lot of issues with bowel movements in general. Spent 3 days in ICU after the procedure and 6 more days in the PCU after that. Was sent home (still in a ton of pain and struggling to do basic activities). 3 days later returned because I started vomiting really bad.... everything I had eaten since I'd been released was coming back up undigested. Ended up being some gastroparesis due to inflammation and swelling around the surgical sites. Got on Reglan to help with that. Moved to be closer to family and am finally getting care established in the area where I live. Was doing okay for a couple months, taking Creon with food and protonix daily, but have recently been experiencing a persistent pain under my lower right rib cage that gets worse and better at times but is always there. Seems to radiate to my lower back and up to my shoulder blade and neck when it's at it's worst. Even stops me dead in my tracks if I'm walking or forces me to pull over if driving. Bloodwork all looks good and CT with contrast looks good. Have an endoscopy and colonoscopy scheduled for the 10th and an appointment to establish care with am oncologist on the 15th... am wondering if chemo is an option this long after surgery to reduce the risk of recurrence. I'm constantly worried the cancer is back. I also had some bumps on my face, neck, scalp, and arms last time I had cancer that went away entirely less than a week after surgery. Those bumps are back, but I felt silly bringing them up to my PCP to have her nurse tell me they're probably sweat bumps.... I don't want to seem paranoid or like a hypochondriac, but I know my body and have this overwhelming sense that something is wrong and we just haven't found it yet

@lcangel2012
Hello Laurie,
Where do you live?

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.

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