Pancreatic Cancer Group: Introduce yourself and connect with others

Hello there,
My heart goes out to you as you've really had it rough! May I ask which medical group or hospital you were treated at? I live in Orange County, California and was treated at Hoag - not a Center of Excellence and I believe they really messed up my possibilities to be "cancer free" for at least a year or two instead of 4.5 months. Waiting is difficult, and we never know the consequences because there are different versions of the pancreatic mutation; there is a chance it could come back but for how long, no one knows. There are survivors so I hope you are one of the lucky ones! Be your best advocate and read as much as you can about the disease - this site is a very good source of information. I lost 50 lbs in the process, but I did gain 25 back and I'm thankful because it will help me fare well over the next few months. I think everyone should be prepared as far as wills, living trusts, etc. I'm actually in the process of selling my home so that I can ensure and see my children get to enjoy at least some of the money! My advice, be vigilant about your health, knowledegable about the disease, participate in these discussions as we all know exactly what you are going through, and how you feel, and enjoy life to the fullest!

@bceg1969 , I don't know whether to be honored or embarrassed! 😉 lol...

I don't know much about involvement with the mesenteric artery, since my Whipple was a good bit simpler.

Three huge names in the complicated surgery biz are Mark Truty at Mayo in MN, Christopher Wolfgang at NY Langone, and Matthew Katz at MD Anderson.

Plenty of other really good ones around, but you want someone at a pancreatic center of excellence to get the complete, specialized care team on your case for experienced recovery care in the hospital after surgery.

Lots of records and studies show how much better the outcomes are at high-volume centers. Counselors at pancan.org can help you find out how many Whipples a particular center or surgeon does per year. If a procedure other than Whipple is required, their number of Whipples __might__ still be a proxy reflective of related experience, but it would be ideal to find out how much experience they have with the procedure you'd actually be getting.

Wishing you both the best!

Thank you
I'll look at their posts
I think I have seen some of markymark posts
I can use all the support I can get!

It is important to connect with others on the same path you are traveling, @bceg1969. I joined Connect when I was facing my third surgery for a rare form of cancer, neuroendocrine tumors. I was feeling very alone when I was told that I had another surgery ahead of me. Connect helped me so much. I hope it is as much of a help to you and your husband.

As you connect with other long-time survivors of pancreatic cancer, I'm sure you will feel surrounded by support. Some other members who post in this discussion regularly are @stageivsurvivor @markymarkfl @gardenlady1116 as well as others.

I will definitely continue to post
I like being connected to others going through this journey

Hello @bceg1969 and welcome to Mayo Connect. I certainly understand you wanting to see the best surgeon for your husband's situation. If you want to find the best Mayo doctor at any of Mayo's three locations, I suggest you contact Mayo for an appointment and describe your husband's diagnosis and the type of surgeon that you are looking for. Here is a link for appointment information.
http://mayocl.in/1mtmR63.
Mayo has locations in Florida, Minnesota as well as Arizona.

I look forward to hearing from you again. Will you continue to post as you and your husband continue on this journey?

My husband was diagnosed in April 2023
Adenocarcinoma of the pancreas
has had surgery to bypass his duodenum since the tumor was pressing on it.
Liver bx since before radiation they saw something there on the cat scan..thankfully it was infection so now he has a stent
so he has had chemo and radiation for 9 months and the tumor is stable but wrapped around the mesentery artery so Dr Clancy at Brigham and women's says he can' have the Whipple ..too dangerous.The tumor is stable and hasn't spread so hopefully in one month after he gains some weight ,he's lost 40 lbs they will try a clinical trial.i know there are surgeons at Mayo Clinic that operate on its with vessel involvement..does anyone know about them?

Just my experience - (after losing 40 pounds) I've been taking enzymes with every meal for quite some time now. The enzyme I use is CREON. It seems to help me a lot with the stomach and intestine pain. As most people will tell you - everyone has different experiences. Do you know which chemo he will be getting and are they starting at 100% dosage verses say 80% ?

Hope other people jump in to give you some more suggestions.

Hi, my husband was diagnosed with stage 4 pancreatic cancer on December 18,2023. He also has lesions on his liver. He is unable to eat much. I would like to know what I can prepare for him with a lot of protein. He has lost about 50 pounds in the last 3 months. He seems to be in a lot of pain after he eats. His chemo starts next Monday, January 15th, 2024. Are there any hints or suggestions out there from personal experience that will help him? Thank you.

@waltsocal ,

It's always good to "get everything in order" but not time to give up yet!!!

I had been meaning to get a will, living will, trust and all sorts of estate planning in order for decades before discovering I had cancer, but didn't get around to it until after the diagnosis. Finally got all that taken care of, but haven't needed it yet, thankfully! For others, it's a lesson to do sooner rather than later. Biggest disadvantage of my delay so far was a lockout from certain life insurance policies and other benefits, but it's definitely one thing I wish I hadn't been preoccupied with while dealing with my bigger cancer issues. Another piece of that lesson is how much complication that removes from your survivors. My dad had all of his docs in order (including Will and Trust) but lawyers still found some way to tie it up in probate court, dragging it out and costing us money.
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All that aside... on the cancer front, not everyone is the same, as you know. Although Folfirinox is supposed to be the wonder drug with Gemcitabine reserved for the feeble, my response to Gemcitabine + Abraxane + Cisplatin after a Stage-4 recurrence (and ATM mutation) has been far better than it was to my pre-Whipple Folfirinox. Although I've been Stage-4 for a full year now, it's considered "stable disease" (knock on wood) for now.

I'm not really experiencing any effects of cancer now as far as I can tell, only some fatigue, low blood counts, neuropathy and hair loss after a year on the GAC chemo. I think I could do this a good bit longer with a blood transfusion, as long as the disease remains at bay, but aside from developing drug resistance, the chemo wear and tear on your body sometimes limits how long you can remain on it.

Trials are a lot harder to get into than I imagined, but are definitely the next logical step. Some depend on any mutations you have, others depend on treatments you have or have not had, all depend on how often you have to travel to the trial site, and so on. I'm still trying to cross that bridge, and will post updates here when/if I do.

For now, just take hope that gemcitabine (maybe combined with some other drugs) will buy you time to explore all that.