Pancreatic Cancer Group: Introduce yourself and connect with others

Just got diagnosed of feb.15 2024. My routine bloodwork of Nov. 2023 was perfect. Came on quick. Wasn't fe3eling great for about a month. skin turned yellow on the eve of 2/14. I never knew that all of these crazy symptoms were related, itching, unable to sleep, bad gas and gas pain, fatigue, uHadrine the color of very strong tea.Had ultrasound. MRI, cat scan, stent put in and biopsies. Has not spread yet, planning chemo befor surgery. Fingers crossed every day. xxgl ev1!

Hello, my husband was diagnosed mid August 2023. He was operated September 1. He had a distal pancreatectomy and splenectomy. Unfortunately he had complications ( leaky pancreas) which developed into abscesses for which he has had several endoscopy necrosectomies. He started chemotherapy December 12. He has no appetite and is down 70 pounds. I work and take care of him and all the home needs, often feeling overwhelmed but I do have friends that I can vent with. I’m looking for suggestions to help my husband with his appetite. He experiences a metallic taste all the time. We have been married for 43 years and it’s so difficult watching him deteriorate however I’m hopeful because this horrible cancer was caught at stage 1b. If anyone has suggestions as how I can help him please share. Thank you

Oh, no! That did come on quick. But it’s good to catch it. Hopefully the surgery will clean it all out.

I’m so sorry! I know what you mean about the metallic taste. I was able to get down Jell-O and maple brown sugar oatmeal. I finally got approved for medical cannabis and that really made a difference.

There is an appetite booster based on cannabis that you might try. It's called Dronabinol. I tried it but didn't think it was effective, but my palliative doc said some patients have good results. My oncologist told me that zinc sulfate can help with the lousy taste in your mouth. Again, I tried it, sort of, and decided not to take it, but other patients have had good results. I have found that Tic Tac mints (the regular white ones) help cover the metallic taste. Some people say lemon drops help. Lemonade tastes good, also sometimes ginger ale. I've also found that kosher salt, which has larger grains than regular table salt, helps perk up food. In general, aim for more meals per day and much smaller meals. Calories are key, so cater to whatever sounds good. You may find yourself chasing some food jags and sudden urges for different flavors. I hope some of that helps!

I also had leaky pancreatic duct after my distal surgery Oct.. 2022. Was on PIC line (no food) for 3 weeks to stop the GI bleeding. Lost 50 pounds during entire pancreatic ca process. Stent inserted into duct worked great as no more leaking. I started with chicken broth, then chicken noodle soup, cream of wheat, jello and then food with more carbs (ice cream), Chobani Low sugar yogurt and foods that were tasty but everything in small amounts. I only had metallic taste when I had to take paxlovid (got covid in dec 2022), but I just trudged on. Best wishes to you and your family.

Also, the picture you see posted is from December 2023 at my part-time job. I didn’t gain 50 lbs back after 1 year, but did 30. I’m on chemo again, but somehow it’s not affecting my weight this time.

Hola! Tengo 63 años y soy diabética. En general me siento muy bien y he tenido más de 30 pancreatitis en mi vida SIN dolor. Me suben las enzimas hasta 30 mil, pero no dolor o muy poco. Tengo un quiste en la cabeza del
páncreas. Pudiera ser canceroso y tendré un whippler en verano. Tengo mucho miedo. Quien ha pasado por eso? Tendré mucho dolor? Estaré inflamada? Cuánto tiempo te hiciste la cirugía? Tardaste mucho en recuperar?

Hi Eva,

Many of us on this forum have had the Whipple surgery for cancer in the head of our pancreas, and a few for cysts or other issues that were not cancer. My experience is only with cancer, so I don't know much about pancreatitis or other issues with inflammation.

The Whipple is not an easy surgery to perform or to recover from, but is manageable with patience. The surgery itself takes 6-8 hours on average. It can be done as an open procedure or via laparoscopy. The recovery time includes about 7 days in the hospital, and then about 6 weeks of adjustment at home. The first 2 weeks at home are mostly for your incisions to finish healing and returning to a normal diet. The next 4 weeks include adjustments to your diet. The insulin production of your pancreas may change, requiring you to figure out a new schedule of dosing. Also, you may find you need to supplement your diet with enzymes to help digest certain foods, mainly fats. It is sometimes helpful to east small meals and stay near a bathroom as you make these adjustments. The changes in your bowels can cause an unpleasant surprise. (I hope this translates properly to Spanish!)

Finally, even if your Whipple procedure is not for cancer, it is still recommended you find a very experienced surgeon at a center of pancreatic excellence to perform the surgery. I'm guessing the "PR" in your name means you're in Puerto Rico. If you are not able to find a surgeon you trust in PR, there are several in Florida.

I hope it all goes well for you!

My wife (75) has just been diagnosed with pancreatic cancer stage 4. After two months of tests, imaging, doctor visits, etc she will be starting chemo tomorrow.

We both have a problem with getting anyone to talk about how long she has to live, how much time chemo might add, how treatment will affect quality of life.

If chemo will add one year of life, but will make most of that year miserable, we have to decide if it is worth it.

Has anyone else dealt with these questions? I know that the five year survival rate is very low (like 2-3%) but no one will talk to us about it.

She is very miserable right now, hasn't been able to eat much of anything for two months, has lost 25 pounds (an she only weight 130 when this started) and has no energy, and vomits whenever she tries to eat solid food.

Tim White