Pancreatic Cancer Group: Introduce yourself and connect with others

Hello. I have just finished nine chemo treatments and am prepping for the whipple on 4/24. Everyone that I have spoken with has had a different experience. For me, the chemo side effects became slightly worse with each treatment. It is nice not to have any before the surgery. I found it helpful to reach out to pancreatic survivors and hear their story. I have also found it very helpful to be in the moment as much as possible. I think my wife has had a harder time than me. She has been an angel. Best of luck to you all!

Hi, I’m sorry to hear this ordeal with your wife’s cancer. Her situation sounds like my sister who had a Totalpancreatectomy done by Dr. truty back in December 2021 nine months later it was metastasized to her ovaries and she had her ovaries taken out in September 2022. She is having a lot of difficulties putting on weight she has lost 10 KG since the last surgery and at present she only weighs 39 kg on a 5’4 frame. I was wondering how did your wife manage her nutrition? It is so difficult to get their weight up because they need high calories, low fat, low sugar, not too much meat, but how are you supposed to do that when they need to put on weight ? I hear that sugar and meat does contribute to the cancer cell growing …damn if you do and damned if you don’t, I would appreciate if I can get some advice from you. Thank you in advance.!

Welcome, and bey wishes to you both on this journey. There are lots of us here who have experienced chemo, and each have our own story. I would encourage your husband to speak with the chemo nurses about any (and I mean any) concern, side effects or anything “new” - they often have tips to help deal with them, know what is significant and will advise dr accordingly. Try to rest, eat healthy, remain positive - attitude helps a lot!. It is not easy, but for me, it was worth it to buy time with my family. I had Stage 3, diagnosed Jan 2021. Whipple surgery followed by 12 folfirinox treatments. So far, so good more than 2 years later. You can do this!

I find I have learned something from every story that is shared in the forum. Hope the journey goes smoothly for you.

I was diagnosed with pancreatic cancer in June, 2022. My diagnosis was triggered by a bout of jaundice. A CT scan revealed a hypodense dense mass in the head of the pancreas and an occluded bile duct. Two ECRP surgeries were needed to successfully insert a stent and open the duct. I had 12 rounds of FOLFIRINOX chemotherapy starting in July and ending at the end of December. I then had a Whipple surgery on January 30th. All margins of resection were clean, so I am considered “cancer free” for all immediate intents and purposes. I’m 10 weeks out from surgery and doing fairly well, all things considered. The journey has not been easy and there are many tales of trials and tribulations to share. But I am in a good place now.

mmatunis,

Chemo (CHT) only, or chemo then radiation/chemo (CRT)?

Which hospital/center and who was surgeon?

Open Whipple or laparoscopic?

I had chemotherapy only, no radiation. I was cancer was originally diagnosed stage 3, borderline resectable. The intention of the up-front chemotherapy was to shrink the tumor, which was in close proximity to blood vessels. I was treated and had surgery at Johns Hopkins, where I work. I had an open Whipple surgery performed by Dr. Jin He. Dr. He also performs robotic Whipple surgeries, but due to a number of confounding factors, the decision in the end was to do an open surgery. Recovery from the incision has been one of the main issues that I have had to deal with post-surgery. It would be interesting to know how things would have been different with the robotic option, not that I ever what to go through another Whipple.

I’ve got 3 more chemo treatments and then Dr wants 3 weeks of daily radiation. Can anyone tell me what the radiation is like?

Has anyone received a false positive ct scan for pancreatic mass? I went to ER to check for fracture after a fall and an abdominal ct scan with contrast detected a mass in the pancreas head measuring 4mm. Consulted a gastroenterologist who performed an endoscopic ultra sound with the intention to do a biopsy He reported that he saw nothing and therefore no biopsy was performed. Has anyone had a similar experience?
Anne Monsees, Northport NY

I am having Whipple surgery in two weeks. Do you have any advice or things you might have done differently before surgery or during recovery?