Surviving?

I suggest you look for Magnetic Resonance guided Adaptive Radiation Therapy with a Linek machine at a large university health system. There are only about 27 of these machines in the US and 67 in the world. This is a game changer for pancreatic cancer. Check out a video about this treatment option on the web site of Sloan Kettering in New York. Massey Cancer Center of VCU in Richmond is where my husband got his treatment. UVA also has this machine. I found out about this . Our oncologist at that time had never heard about it. All oncologists treating pancreatic cancer patients need to get informed about this „curative“ protocol, not palliative!

I can relate a little to your situation. My family, bless them, have not given up on me, and my husband and kids are doing everything possible to help me through chemo. I do think, however, that my MD has given up. I don't think he was ever on board with "let's fight this." He is frank and honest, but not very encouraging, even for things that might deserve a shout-out. (For example, he could say "Good!" when I mention that I've been walking and trying to build strength. But no, he doesn't.) Should you consider switching MDs? I'm not there yet, but I do plan to address this issue with him at our next visit.

What services does your oncology practice and/or cancer center offer? Mine has a full slate of activities and classes for patients and caregivers. Most are still on Zoom, which is unfortunate, but yesterday at the infusion center, we happened to bump into the artist in residence, who kindly offered to come visit during my next chemo session and bring some activities to do. Perhaps your practice or cancer center offers activities you could tap that are more positive and will put you in touch with people who are more positive. Re faith, everyone has a different approach, and I respect that. Perhaps there are some books or web sites that talk about some of the issues you face without belief in the higher power.

This is a difficult diagnosis, and I think we all know that. But we can't go into this process already believing that we're doomed. That's the issue I see: How to remain positive and hopeful? I'd be interested to hear others' ideas as well.

Thank you for sharing this. I hadn't seen anything about it. What stage is your husband's cancer, if I may ask? I wonder because I'm assuming the MRI-LINAC machine can work only with the main tumor, not metastases, and that having mets would rule out using the machine.

My husband has localized advanced stage, inoperable because of blood vessels involvement. As far as we know there is no metastasis, but I know Massey is using this machine with metastatic patients. I’m not sure, of course, how that works. But I believe it is the best option for patients who, like my husband, cannot have surgery. He is feeling much better and has gained five pounds since he had five rounds of this treatment in April. We’ll see, of course, over time. Best of luck to you and spread the word. Too few people know about this. VCU/Massey‘s marketing department is actually conducting a video interview with me on June 21 to help spread the word, I guess because I am so passionate about this and my husband‘s radiation-oncologist pushed for this to happen.

Sorry for my misspelling…..the machine is called

ViewRay MRIdian Linac. Google that to find/see a map of where centers are in the US or indeed the world.

There are currently 24 sites in the USA with the ViewRay MRIdian Liniac instrument. This link lists those sites-
https://viewray.com/mridian-treatment-centers/?_sfm_location=United%20States

Oncologists could certainly benefit their patients by keeping up to date on best treatments. I believe all of them should connect in some way with a pancreatic center of excellence. Difficult for the general oncologist to keep up with everything.

Always believe in yourself! The blessings of each day are small sometimes but I notice them more, helpful person at the supermarket who offered help when one of my bags of groceries broke. The friend who came for a walk with me and is aware of my condition and understands I sometimes need to get to the bathroom quickly, the person who helped me fold by king sized bedcover in the laundromat. I feel blessed because I can drive despite some neuropathy in my feet. I have let go of the future.

Thank you for your perspective.
I am not ready to let go of the future, since I would still like to have more of it.
I have realized, however, that if I am granted more time, I need to use what resources I have to make my surroundings more life-sustaining than they are currently.
It was also suggested to me today that it is okay to move through the grieving process about what I have lost, rather than staying stuck in the denial stage, where I pretend that I can handle this situation on my own.

Oh I can relate. Im 14 months since dx stage 3 currently in operable its been a roller coaster. After proton radiation end of Sept I was doing ok , could get around. Then this march my dueodenal stent was compromised by scar tissue and needed another in April , an that floored me more weight lost , I am skeletal..
Contemplating a gastrojunectomy.. ( anyone had this situation?)
currently my bloodwork is ok and c19-9 normal range 27
So its upsetting to have a blockage thats causing pain
Its a surreal position to be in isnt it ? and trying to stay positive is tough somedays
But the love for my family is keeping me focused on surviving as long as I can
Blessings to you and all of us