Treatment options for pancreatic cancer stage 4?

Thank you so much for your kind answer.

Thank you for your kind reply

Update!
I am now post liver resection and pronounced NED! After the pancreadectomy the tumor board projected I had a window to resect the liver based on the success of the Y90 and quick recovery from pancreadectomy so I went for it.
Having a team that believes in you, being as healthy as you can be, and understanding the treatment will be a process-may be key factors in living a good life. Remember that stage IV is just a label. If you come into this healthy, there can be options.

No advice, but thank you for sharing your very difficult story. You are in my thoughts and prayers as you seek assistance in finding pain relief for your sister in law. It is a blessing to have family members like yourself who will stand with their family member in the most difficult of times.

That’s wonderful! Congratulations!

I realize my NED status may not remain forever, as my CA 19-9 had begun to climb prior to this surgery.
But I will rejoice in the good and continue to look for long term maintenance possibilities. I believe there are some in trials but nothing established yet.

Hopeful for all of us!

My husband had the Whipple and is now undergoing chemo every 2 weeks for 6 months. Following this treatment, His oncologist is recommending 6 weeks of radiation plus chemo pills. Does this sound appropriate?
joanalc@comcast.net

I was Diagnosed with stage 4 pancreatic cancer in October of 2021. I had chemo every 2 weeks. In October 2022 the PET scan showed no cancer activity and the Ca19-9 was down in the 40’s. A second PET scan showed no cancer activity and my Ca19-9 is in normal limits. I drink green juice every day and take various vitamin and mineral supplements. My tumor is also over my major blood vessels and is not operable. I am continuing on chemo as there is not a protocol published fir treatment. There is hope. We never know when a miracle will occur.

Hi I feel for u.. my boyfriend of 10 yrs had it. They try to do the Whipple surgery but it was too late it was wrapped around his portal vein I would get everything in order the pain is just unbelievable I really can't tell you anything that would make you feel better but if you need anything if you want to talk just text me it's a very hard thing to go through there's not much they can do but just make her comfortable and check on the hospice Debbie one thing that did help is getting them up everyday and walking him around the block that made him feel better

It sounds like your husband is receiving (m)Folfirinox based on the dosing schedule of starting a new cycle every 15th day over the course of 6 months. This is a standard of care protocol. Additional treatment using radiation with an oral chemo pill such as capecitabine (Xeloda) is to give added insurance of addressing minimal residual disease.

Many people do not have a full understanding of the term NED which stands for No Evidence of Disease. It is used to signify that using conventional imaging-e.g., CT, MRI or PET, if there is disease remaining known as minimal residual disease (MRD), it is too small an amount to be detected by the sensitivity of the instrumentation. So it is possible that micrometastatic disease is still present and the hope of the oncologist is the patient’s immune system is robust enough to contain it. If the immune system is challenged and weakens, progression of malignancy can result.

I and others were curious on why 12 cycles was chosen for standard of care to try and achieve NED. Coming from the field of cancer and immunology research, I searched for scientific papers to see if there were studies done. When I could not find any, I contacted the lead authors of papers dealing with the clinical trials and studies using Folfirinox. What I learned is 12 is an arbitrary number chosen by a working committee of oncologists who felt it would provide the goal of NED with tolerable side effects, namely peripheral neuropathy.

When I was diagnosed with stage IV disease in 2012, the question I asked myself was what was the purpose in my doing chemotherapy? Was it to buy some time, long-term survival or perhaps a cure? I took the decision I did not want palliative treatment…I wanted to attempt curative despite being stage IV. This began my self-advocacy to convince my team I was strong enough physically, mentally and emotionally to handle aggressive Folfirinox. Instead of 12 cycles, I did 24 and after every six, I had resting cycles of just 5-FU with Leucovorin to let my body recover, lessen the side effects of peripheral neuropathy while at least keeping the tumors stable, if not continuing to shrink on the reduced regimen.

The aggressive chemo beyond SoC likely destroyed any MRD. While I was on SoC, I was genetically tested and found to have a targeted gene mutation. So after getting as much benefit from Folfirinox, I went on maintenance monotherapy with an oral drug which works differently than chemo. In June I will celebrate 11 years survival and have been told by a number of oncologists following my case that I am considered cured from the aggressive chemo regimen I had.