Pancreatic cancer relapse

Get your scans at major cancer center. All machines are not equal and all systems are not connected digitally.

I would offer the following - scans are more advanced at centers of excellence, radiation is more advanced - and, chemo is more advanced, not necessarily in the actual chemicals, but in their understanding of your needs including thud knowledge about when to change - and in that they are far more sensitive to your particular cancer, far more "specialized."

Based on my sister's experience, I continue to recommend patients start chemo quickly at the center of excellence, stay on chemo as long as they will allow, have CRT there, and have Whipple surgery as quickly as they will allow, and remain there for as long as needed, including follow-on chemo.

I know this sounds hard, but it offers, IMO, the best chance to beat this disease.

Hello lilliejane2.
Thank you for your suggestion and your concern. Your message is helpful and reassuring.

My husband also visualizes that he is slaying the dragon and is in charge!
And he dreams, but in his dreams he is calm and being helped and protected!

My best to you with your biopsies tomorrow.

Hello everyone.
In my last post, I was waiting to have biopsies of 2 lymph nodes that were found on CT and MRI. I had an EUS performed recently and no lymph nodes were discovered at all. They were originally found on a CT, then also on an MRI, but the MRI indicated the nodes had shrunken from the dimensions on the CT.
in addition, there was an area on the CT that the radiologist said was either lymphatic tissue or neoplasm. That was absent from the subsequent MRI also and was not found during the EUS procedure. So, we are back to having regular scans done again and if
Nodes are found then having another endoscopy to do biopsies. Any thoughts?

@lilliejane2, how often will you have scans done? How are you doing?

Hello. Thank you so much for your thoughtfulness!!
I'm having trouble with digestion. I developed SIBO, or at least that's what it seems. My gastroenterologist finally put me on xifaxan...still waiting on the results of the SIBO breath test. Xifaxan is an antibiotic that removes bacteria from the intestine. And I really have to watch what I eat. After I fi ish the antibiotics...which have been just mediocre in clearing the pain, I will start treatment with an herbal called Atrantil and other items recommended by my naturopath. Something will help, I'm sure.
Ive been having pretty intense spinal spasms too. And lost 7 pounds in 7 weeks. I'm trying now to put those pounds back on. I remember when it was so easy to gain weight but hard to lose it. Now it's just the opposite!
As for scans, I have another at the end of September. If that shows lymph nodes, they will do another biopsy.
I cant tell you how much it means to me that you reached out!
I've been feeling like I'm losing hope a little. SIBO is much more painful than chemo ever was.
Thank you again. You've really helped me through a difficult evening.
I hope you are doing well. How are you?

Could you please define the 2 "gold" standards of care for this disease?

If you can't have surgery, there are two traditional, "cytotoxic," systemic chemotherapies. One is "gemcitabine" or "gemcitabine plus other stuff." The second is (modified) Folfirinox and variants.

Other options not typically used as first-line treatments or outside of clinical trials are certain immunotherapy drugs and targeted therapy drugs.

Radiation is common, but other techniques like HIPEC, Tumor Treatment Fields, or IRE (Irreversible Electroporation) are a bit more "out of the box" and hard to find a provider for.

Two good articles on the standard "Standards of Care" are here:
https://pancan.org/news/going-beyond-standard-care/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6176548/

Thank you for replying, Markymarkfl. My stepdaughter is newly diagnosed and doing the Folfirinox with variants. She has a couple more treatments in September and it will then be determined if she's a candidate for surgery.

I'm wondering where she would go from there if surgery is not done. For difficult cases is Mayo the best place to go for help? Stanford? We have no experience with pancreatic cancer and have so much to learn, including the
top centers/doctors to seek 2nd opinions.

Hello. Depending on where you live, there are centers of excellence in many places. Sloan Ketterin and NY Presbyterian in NY,
Roswell Park in Rochester NY. Dana Farber in Boston, MD Anderson in Texas, as well as of course Mayo Clinic in 3 different cities.
I had my Whipple done in Albany, NY .
My surgeon was top notch.
I wish you the best in getting through all of this and wishing you the best outcome ..
Cancer free. Keep
On visualizing thriving through it all.!!