Pancreatic Cancer Group: Introduce yourself and connect with others

Hi all, not sure if anyone has any comments for me , just thought I'd post what I'm currently going through, I find all your comments very helpful:

I was in chemo cycle 2 in early December, and on my 2nd infusion I got a high fever (although no infection, WBC and neutrophils all good) but my ALT liver enzyme skyrocketed to 519. Doctor cancelled my 3rd infusion to give me a break, and lowered my Gemcitabene dosage to 80% for my 3rd cycle to avoid damaging my liver (my ALT had come down on its own, no blockages, but still high at 81). Unfortunately, the break also gave my cancer a break, and my metastasized belly tumors started growing again and became painful. I had my first infusion of cycle 3 on December 27th, enough my CA19-9 had jumped from 78 to 159 to 322 and still lots of tumor pain. So naturally I freaked out. Tried to get them to up my Gemcitabene dosage to 90% for the 2nd infusion, but my Doc was on vacation and the on-call oncologist wouldn't do it. I had my 2nd infusion yesterday, and so far things seem a little better, still a bit of pain but less so far, and my anxiety is lower. I have my CT scan on Tuesday. I'm not expecting great CT scan results but we'll see. Gotta figure out if this cocktail can do it for me.

Not sure who the they is you are talking about. There is prescription medication to treat gas and the bloating and pain it causes. I had a small intestine resection back in 81 and have had trouble constipation since. December 2023 I had major symptoms with diarrhea and one of the medications I was put on is Dicyclomine. It treats IBS giving relief of bloating and gas pain. It helped a bit but until I stopped my intake of fat and found that was the cause of my problem and started Creon did I get any significant relief. Up until then the only way I could leave my house was to stop eating for 12 or more hours. That was in the spring of 2024. Then doctors were all sure my pancreas was just not producing enough enzymes and refused to test for cancer. June 1st my tumor was found. I am still taking the Dicyclomine and Creon after Whipple surgery. I adjust my Creon so as not to return me to my pre cancer constipation or my pancan steatorrhea. A search for Creon should bring up an old thread by another member that lists fat levels in your diet with the amount of Creon to take. Ask your doctor about prescription medication for you to control your gas. Best of luck to you and everyone dealing with cancer.

Hello again, they recommended beano next to creon. Has anyone used it? The problem is that it is not available in Turkey, it is not possible to order it from America

If your spleen is to be removed, talk to surgeon about vaccinations needed prior to or soon after surgery. Immunity will be low so not too much interaction with anything that can pass you bugs. Eat carefully - fresh food; no leftovers for a while, no raw food, no salads in restaurants. All the best.

Thanks for the info and advice. I have resumed some of my usual chores, especially with our livestock and look forward to more contact with them when allowed post surgery. Your input is valued and appreciated. Best wishes to you and your husband for the new year.

I think the fact that there are so many cancer patients in developed countries is explained by living conditions, non-ecological living, stress, etc. The treatment of cancer patients is completely free of charge in Turkey, including everything.

I think some of this is that healthcare is better in some countries than others. I have read reports about national healthcare in Canada being so slow that people that can afford it had been going to the us for services. MRI's, CT's and other things like knee replacement and even x=rays. Things have slowed down some in the US with the expansion of healthcare over the last 10 or so years. But if a country has poor health care then cancer will not be found so there will be fewer cases diagnosed. And if a country has really good health care then more cases will be diagnosed. Maybe this will not account for all the difference but it would a bit I think.

My husband had a distal distal pancreatectomy and splenectomy in Dec 2023. It was Stage 2B because the tumour was attached to the stomach. Recovery from surgery took about 2 months - I think it is because a wedge was cut off the stomach and there was healing there too. He carried around a drain (tube and bag) for about 3 weeks. About 66% of the pancreas was removed. All the lymph nodes, one adrenal gland, some abdominal fats and the spleen was tested negative for cancer. He has been on chemo for almost a year now - first with Folfirinox then Gem-Abraxane.
He lost weight in the 2 months and surgeon put him on Creon. He lost more weight once chemo started - all together 10kgs and he is not a big man so it was pretty scary. Good news is he has now regained all his weight, eats well, exercises and travels. Quality of life is what you make of it. The doctors know the science and the medicine but how you respond is entirely yours and being positive goes a long way. Just expect that recovery will take a little while and wake up each morning expecting to be better. All the best.

That's great that your wife keeps you going! Don't forget to read the posts in this discussion from others who have had this surgery.

--Recovery after distal pancreatectomy and splenectomy
https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/
Keep posting with your questions.

I’d like to say “welcome”, but really is it a welcome you rather not have? - ha ha!
I went straight to my distal and spleenectomy surgery upon diagnosis in October 2022. 1 lymph node involvement and tumor was 2.4 or 2.5 cm so I was stage 2. I had recently turned 65 and used to walk a lot, but had many of the “comorbities” as they say; high blood pressure, borderline diabetic, cardiac arrhythmia (ventricular tachycardia) induced by extreme stress, sleep apnea, asthma. Had my doubts about coming out of surgery, but I did; just make sure they take as much as pancreas as is appropriate. In my case they took 75%. I too lost weight almost as much as you but most of I lost after surgery due to complications of a leaking pancreatic duct and fluid in lungs (walk a lot after surgery). I put it all back on since :(. Eat things you try not to eat too much I’m sure like ice cream or frozen yogurt or donut etc.Good luck in surgery. Where will it be done?