Pancreatic Cancer Group: Introduce yourself and connect with others

Hello Degleigl,
Were you previously under thread of @tomdecker1117? I’m so very sorry to hear of your loss. Sounds like a stent should have been put in early on. My bestie since high school passed from gall bladder cancer in November 2022 for the same reason. Her dr at Kaiser in San Diego put in a plastic stent in her intestine sometime after her surgery but somehow there was no follow through ultrasound endoscopy after 6 weeks and tissue had grown inside the stent when a metal stent MIGHT have prevented that so she also passed from starvation. I had just undergone pancreatic surgery so I wasn’t able to even visit her in the hospital but her family indicated it was difficult for them not to be able to help her at that stage. Thank you for sharing about your loved one and so very sorry for you. The fact that you posted on this thread shows that he had a great support system from you. Again, will be adding you and Tom to todays prayers.

Again, this disease, based on the mutations you carry, “is the hardest cancer to cure” according to my medical oncologist. What most of us get is extension of life through chemo or surgery or radiation. My dad did pass 25 years ago due to a misdiagnosis (food poisoning) and so it spread to his stomach and everywhere else and could no longer take anything but Ensure and lost most of that daily. He lived 8 months, but he did pass on to me his strength and integrity during that time and so I continue my fight.

Hello, i had nodular melanoma and post surgery doctors suggested immunotherapy. A catscan found my main pancreas duct was enlarged too 1cm. I was diagnosed with IPMN and because of Opdivo infusions to keep melanoma fron returning, it was decided we would monitor the pancreas with scans. Last month I was diagnosed with early stage less than 1 cm invasive adenocarcinoma of the distal body of pancreas. In one week I will see a medical oncologist for four months of neoadjuvant chemotherapy, complete pancreatectomy, then two more months of chemotherapy.

I am so very sorry for your loss and the tragic way it happened. God Bless you and your family.

@debleigl

Please accept my condolences on the loss of Tom. How very difficult for you. I would encourage you to post on Connect's Grief/Loss Support Group. Here is a link to those discussions,
-Loss/Grief
https://connect.mayoclinic.org/group/loss-grief/
You can use these discussion groups to post about Tom, feel free to post about who he was to you and how you miss him. There is great healing in sharing memories after someone has passed away.

Does this sound like something you could try?

Hi! My name is Henry and I was diagnosed with Stage 4 pancreatic cancer the day after Thanksgiving last year. Surgery is not indicated for me due to the placement of the tumor and its expansion into connected blood vessels. So I underwent chemo for 11 sessions before I had to quit, and amazingly there was no further growth in the tumor. I'm currently on a "chemo holiday" for 3 months. After that period, I'll get another scan to see what options might be available.

I'm uncertain about the future and wonder how the disease will progress. I'm, fortunate to have a great group of family and friends that are a constant support.

Thank you for letting me join!

Yes, I didn't know about that group, thank you!

Hello @bonniestork, so glad yours was found early -make sure drs run your pathology so you will know your mutations. Also, 2nd opinions from a center of pancreatic excellence never hurt. Best wishes and let us know of your progress.

Hi Henry,
This is a good network to connect to. I learn something every day from the posts; some of which got me to sooner care, as opposed to what some drs favorite position of “wait and see”. Make sure you know what your mutations are and see if you can get one of your drs even your primary to place orders for some CA19-9 (tumor marker blood test) during your chemo holiday. Best wishes to you!

Henry,
I am so glad that there has been no further growth in the tumor! I would worry about being off chemo for that long. My husband passed away in July. He was stage 4 with metastasis to the liver and eventually the lungs, stomach, etc. He did 12 sessions of folfirinox initially along with a trial drug and then had a stroke, which caused him to be off chemo for approximately five weeks while he recuperated from that. During that time the cancer grew and spread a lot. I know everyone is different, but just wanted you to be aware since this cancer is so aggressive and hard to control. Best wishes to you for a long and successful journey ahead! < 3