Pancreatic Cancer Group: Introduce yourself and connect with others

I have lived in California for about 40 years.
I am 70 years old previously in excellent health except moderate obesity. In mid 2022, I began to have occasional vomiting. Workup found locally advanced 3 cm tumor compressing duodenum, inoperable because of closeness to artery. After 6 month of Gem-Abrax chemo, I qualified for and had Whipple surgery in January 2023. Good recovery and remission for 6 months, but elevated Ca19-9 and PET then showed mets to lung and abdomen. Did 11 sessions folfirinox. I took a wonderful 2 month break from Chemo to let my body recover. Unfortunately I now have progression of mets in abdomen and lungs. I will be restarting GA on bi-weekly basis. I still feel reasonably well and remain active. Moderate CIPN from oxyplatinum. I have been blessed so far with great support team of family and clinicians.

Welcome, @calitex. I moved your introduction to this intro thread:
- Pancreatic Cancer Group: Introduce yourself and connect with others https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/

Your experiences are very welcome. Here are a few discussions where I think you might wish to participate and add your experience and support:
- What's next after folfirinox? https://connect.mayoclinic.org/discussion/next-after-folfirinox/
- Anyone on Gemcitabine with Abraxane? How long? Effective?
https://connect.mayoclinic.org/discussion/gemcitabine-and-abraxane/

merhaba ben mehtap, Türkiye'den. ben bir hasta yakınıyım.annem pankreas ca. 4.evre doktor onun için 6 ay ömrü var diyor, ama ben buna asla inanmıyorum. onun bütün ömrünü ağrısı ve acısı olmadan geçirmesini istiyorum. ilk zamanlarda çok korkup üzülmüştüm, ama onunla birlikte savaşmak için şimdi daha kuvvetliyim. annem hastalığını sadece iyi huylu kitle olduğu şekilde biliyor, böyle olmasını psikolojik olarak iyi hissetmesi için ben istedim. şuanda gemsitabin ve kapesitabin içerikli kemoterapi alıyoruz sadece karaciğer metastaz olduğu için ameliyat olamadı. ilk zamanlar çok ağrısı olduğu için sinir blokajı yaptırmıştık bu ağrılar için iyi gelmişti. şuan mide de şişkinlik var, iştah var ama şişkinlik yüzünden fazla yemek istemiyor. ayrıca şiddetli kabızlık da var, bunun dışında genel durumumuz iyi, herkese şifalar diliyorum.
translation
hi, I'm mehtap, from Turkey. i am close to a patient.my mother pancreas ca. 4.the doctor says that he has a 6-month life expectancy for him, but I never believe it. I want him to spend his whole life without pain and pain. at first I was very scared and upset, but now I am stronger to fight together with him. my mother knows about her illness only in the way that it is a benign mass, I wanted it to be like this so that she would feel good psychologically. we are currently receiving chemotherapy containing gemcitabine and capecitabine, but he could not have surgery because he had liver metastases. at first, we had a nerve block because she had a lot of pain, which was good for these pains. now there is bloating in the stomach, there is appetite, but he does not want to eat much because of bloating. there is also severe constipation, apart from that, our general condition is good, I wish everyone well.

Thank you for adding me to this group . I am 69 years old and diagnosed with stage 4 pancreatic cancer in October of last year . I have completed 10 treatments of forfirinox and will start chemo/ radiation next week for 5 weeks pending the whipple surgery in August .

suelan,

Are you being treated at a pancan center of excellence?

hey, can anyone tell me the difference betweenCa19 testing ca125 testing and cea?
Thanks.
Son in law 4 yrs post pancreatic cancer, bit ca 19 not very elevated thruout.

Retired MD here. Hello to all you brave souls. My journey began 3 days ago when I went to the emergency room with pain, abdominal mass and jaundice. The surgeon was sure it was pancreatic adenocarcinoma the first time I saw her. Biopsy yesterday via endoscopy preliminary results showed malignancy. Waiting for treatment plan. Hoping I will be eligible for Whipple although I know it will be awful.

@steffi2 Sorry to hear about your diagnosis, but welcome to our club. I hope/recommend they order germline and somatic DNA tests as well as CA19-9 for you before they start any treatment. The genetic results may take longer to get back than you can wait before beginning treatment, but the results can at least help understand if you're on an appropriate treatment plan or not (or what the next step might be).

The Whipple was not easy, but I wouldn't call it awful. Recovery from and recurrence after Whipple (including 1.5 years of extra chemo) were easier for me physically/medically than they were psychologically. I'm still a very healthy Stage-IV 61 year old working full time. (And disclaimer -- I have zero medical training.)

But even the "venerated" Whipple (assuming your tumor is in/near the head of the pancreas) might not be right for you. You might consider total pancreatectomy for reasons discussed in https://pubmed.ncbi.nlm.nih.gov/27215900/

You might also find that one of the "cancer vaccine" classes of treatment are appropriate, but that starting chemo first could disqualify you from relevant trials.

Everyone is different, but the "Standard of Care" treatments tend to produce "standard" results. If you have access to a pancreatic cancer center of excellence (e.g., Mayo, MD Anderson, Johns Hopkins, NY Langone) I would suggest you try to book an appointment there immediately.

Also, get all the imaging you can (PET, CT, MR) with pancreas-specific protocols at the best centers with the best equipment and best radiologists you can. You need a really good baseline to make the best treatment decisions.

Regarding surgery, there is a lot of debate about whether neoadjuvant chemo is appropriate/necessary (and if so, how much). Good discussions on each side from prominent doctors (Vandy and MDACC) here:

Regardless of any pre-surgical treatment you receive (even if "Total Neoadjuvant Therapy"), I would recommend supplementing that with adjuvant therapy and VERY frequent, detailed monitoring (more CA19-9 tests, ctDNA tests, imaging) as the PDAC beast has a very sneaky tendency to come back. The intra-operative and post-op pathology can miss malignant cells or simply not contain malignant cells despite them being elsewhere in your body. Early detection and treatment provides the best chance for a positive outcome.

I wish all the best for you, and hope you can share anything you learn or anything you need with us here.

Thanks,

My name is Elisabeth. In 2021, i was incidentally diagnosed as having an ATM gene mutation that placed me at high risk of pancreatic, ovarian and breast cancer. Tbe genetics GI dr i initially saw thought i was at relatively low risk of pancreatic cancer (no family history). In Dec 2023, i had a baseline pancreatic abdominal MRI which showed pancreatic cysts. The pancreatic oncology surgeon i subsequently saw has identified my diagnosis as malignant neoplasms and is monitoring them w regular MRIs. i have just made an appt at Mayo because i want to see a top pancreatic specialist in a world class pancreatic clinic