Yes, there are great resources out there.
First, the best place for doctors and general information is Johns Hopkins. They even used to give a remote/zoom second opinion, for self-paying patients. Their website has some good basics.
Second, go to this website.
This is an excellent patient advocacy organization for people with CP and their families. Call them, tell them where you are and what you said here, and you try to figure out where to start, and they will help you. They can help you with everything from finding experts near you, finding relevant clinical trials near you, tips/things to read and more.
Look online for pancreatic cancer support groups/discussion forums. Hopkins had a great one, but he’s no longer active. Ask PanCan where the best ones are right now.
Just know that a lot of what makes this cancer difficult is that it can move quickly and spread widely, most chemotherapy is only effective for a short period of time, and cancer and chemo can cause a lot of side effects. For pancreatic cancer, these include abdominal pain, loss of appetite and an early feeling of fullness (gastroparesis is a word to learn), weakness, profound fatigue , depression (due to the cancer itself!), new diabetes, new difficulty feeding from food (thus needing pancreatic enzymes to be taken by mouth) to begin with.
Having one doctor to treat everything is usually not enough. The oncologist will focus on chemo. Find the right nurses (chemo nurses and RNs working with an oncologist) to help you with any side effects of chemo. Get the hospice doctor ASAP! We had to find a gastroenterologist to help when abdominal pain/bloating got worse (to treat gastroparesis) and a pain specialist to help with painkillers and to assess when a nerve block needed to be done. The primary care physician helped manage diabetes, which was new to us and learning how to manage insulin and diet takes time.
Remember – All symptoms have treatment options. Call the nurses/doctors for everything. Don’t accept the pain/discomfort. There are always options.
For example, my mother was quickly started on an antidepressant with a follow-up with the cancer psychiatrist, had her opioid doses managed by a pain specialist, then the palliative care doctor, started ritalin to help her have energy (worked great!) and she saw a nutritionist at the cancer center to help us manage her diet/diabetes/digestion needs. But it’s a lot to learn, to juggle, to remember, to manage. A lot for an 80 year old husband to do on his own. Somebody has to be there, writing things down. You don’t have to learn everything all at once.
The palliative care doctor will help you decide when to continue chemo and when to move to hospice. They are the best at handling these discussions.
So take a deep breath, call PanCan, and spend some time this weekend browsing the sites I recommended and watching what PanCan recommends.