Newly diagnosed pancreatic cancer

Welcome to the forum @tsacco! This is a very good place to be as far as getting some guidance (just from perspectives of people that have this disease; most are not doctors here). 135 is above the upper limit of normal which is 34 and 37. I was 92 back in 2022 before my surgery and before any chemo treatment. Following surgery or different chemo regimens or radiation I've been as low as 8. Today, I'm at 11,100 ( I'm not sayung it's ok to be this high and I'm working on finding treatment to address my current metastasis!). I have mutations that are ATM, KRASG12D, and TP53; a more aggressive group of "shedders". Has your mom had any biopsies? The results will tell what your PATH is. "Know your path" as my surgeon used to tell me; he was talking pathology. Your pathology will drive what type of treatments work best. My cancer was in the mid and tail section of the pancreas; so I also had the spleen removed. I'm about to turn 68, and I've got all of those critical underlying health problems! I continue to walk about 5 days per week, work with my little consulting business when I get a contract that I can do or my daughter could take over for me, if need be, and continue to bake desserts from my diabetic cookbook. Besides knowing what your mutations your mom has, her treatment must be at a medical center that treats a high volume of pancreatic cancer patients. I hope you are in a location where that's possible and if you don't mind sharing what your state and metropolitan area you are in many on this board will be willing to share what facilities and possibly even dr names that you can take her to. Keeping up weight is so important. Trying making her shake with her favorite fruit (just one type to start), some almond milk or a nondairy, water and protein powder. What were favorite sweets? She might be more willing to take at least a few bites of those. Don't give any foods that take more effort to digest. Fish is good, I gave that to my dad when he had pancreatic cancer at 77. There are members on this board in there 80's who are thriving and there are those fighting (like me) to extend a little more or maybe a lot more time. It also depends on mutations, but for those that don't have the BRCA type or PALB mutations or other types of more forgiving pancreatic cancer, there are treatments and clinical studies being developed all of the time. Thank you for finding this board and helping mom out! And as Bette Davis said, "Hold on - it's going to be a bumpy ride"!

Thank you for responding to me. She has moderately differentiated adenocarcinoma but I don’t know the exact mutations yet. We live in upstate NY and she is being seen at Upstate Cancer Center. I tried getting her into Sloan Kettering but it’s been about a month and they just approved her insurance. I have not called them yet because she likes her doctors at Upstate. I am just very worried about her and surgery and her recovery. She’s strong but very thin.

@tsacco
Don't get too far ahead of things. The testing, diagnosis, and suggested treatment are a process. Let that process work for you folks. Ask your questions, voice your concerns, try to get as comfortable as you can with the uncomfortable. Like @mnewland99 said, you are in a great place to speak with other patients and caregivers like yourself. There are different types of pancreatic cancer. The most common type is adenocarcinoma. Do you happen to know the type of cancer she has in her pancreas?

Go with the best drs. Sloan would be a great choice from what other people post. You don't get do overs with this disease; provided they could get her in quickly.

There is a group both of you should sign up for that helps patients. Seena Magowitz Foundation zoom chat for newly diagnosed patients. Sloan and John Hopkins are great centers. She needs to go to a doctor that specializes in pancreas cancer no mater how much she likes her Doctor.

Yes. I have to second and third that! This is not a disease to manage casually and few physicians have actually managed a high volume of cases.
I am at a crossroads, with mutations that @mnewland99 has , and having to look beyond my hometown for recommendations. One always has to have a plan B with this cowboy!

Yes, 1 false move and boom CA19-9 can go crazy!

Thank you! Yes, we are starting a new neuroendocrine group at Seena Magowitz! Please contact us on the website! My colleague, Mark should be able to answer your questions. And I am happy to help too! Get to the best quality hospital you can. Teaching hospitals are best at diagnosing and managing rare cancers.

She has adenocarcinoma. Scheduled for a whipple on 7/29.

Where is it being done?