Pancreatic Cancer Group: Introduce yourself and connect with others

Hello again. My husband is nearing his 8th chemo treatment with Folfirinox and we are now told he could go longer. This was the first time it was mentioned. I am wondering how many folks go longer than 8 and what determines how long? The chemo is challenging. Its the cycle of knowing when the bad days are coming and just trying to get through them. As a caretaker I find massage helps. Good wishes to all out there dealing with this. Anne

Catherine, we will be praying for you through the surgery and your treatments.

My wife was diagnosed at stage 3 in July 2019. She started with 9 cycles of Folfirinox, followed by SBRT (targeted raditation), modified Appleby procedure (everyone knows Whipple, no one knows Appleby except a few top specialists) and then recuperation for almost a year. Unfortuantely her recuperation was during covid and the isolation was heaped on top of the issues with recuperation. A new tumor was discovered in the ovary (skip metastasis) in February 21 and it was removed in March followed by Gemcitibine?Abraxane/Cisplaten. She just compelted her 12 scheduled treatment but now faces additional treatments until her numbers or scan put her in the clear.

I wish I could tell you that there won't be tremendous hurdles, but you have more support than we do. We have no children either and no nearby family and due to covid, even well intentioned friends haven't been able to do much. Everyone's journey is going to be different. My wife's has been extremely rough. Everything from ongoing eating/nutrition to chemo side effects to more side effects from the meds treating the side effects. Others we communicate with have a much easier time. Hopefully you will be on the easier path.

You are correct that this will be extremely difficult for your husband. Our marriage was always close to 50/50 as far as duties and responsibilities. Since her treatments began, it has been more like 95/5 and it is exhausting. But, I do it for her. I constantly remind myself not to complain because I am the healthy, strong partner and nothing that I have experienced is as difficult as what she has been facing.

Good luck and bless you and your family.

Hi Colleen & Members, thanks so much for reaching out.

Tomorrow will be three weeks since my diagnosis. I have been on autopilot just trying to go step by step. I haven't allowed myself to take time to absorb everything and I'm not at all prepared emotionally or physically for my surgery next Wednesday, 9/22.

My husband, Tom, will be with me. I don't have children. I have three sisters who are my support system. I would do anything to spare my husband this pain. He is such a good man but he can only understand so much of what cancer is about and what it does to you psychologically. He can only go with me so far on this journey. I will need to go the rest of the way alone.

I have many questions: how much pain can I expect after surgery, how long will it take to be up and about, when does chemo start, what foods will I be able to eat? The questions go on and on.

One of the most difficult aspects of this is that I've never been comfortable asking for help. Unfortunately, this is just too big for me to handle on my own. 😪

I would appreciate hearing about everyone's experiences if you're comfortable sharing.

Thanks so much.

Sincerely,
Catherine

Hello everyone.

I was diagnosed on December 28, 2020, while in Florida visiting family for the holidays. I had been having discomfort since September/October and assumed it was indigestion. It was persistent, so I thought it might be an ulcer and went online to look up my symptoms. They lined up with gallstones, which made sense to me since both my parents had gallbladders removed. The GI I saw thought that was the case as well, and ordered several tests to confirm. Delays due to the holiday schedule bumped the CT scan I was supposed to have back to January, so I drove down with husband and kids to spend the holidays, with the idea that if things got worse I could go to the ER. That's where I ended up, not realizing I was jaundiced (I'm slightly olive complected) but itching like crazy. A CT showed the mass on my pancreas, later confirmed to be adenocarcinoma head mass. (It was ruled locally advanced, borderline resectable, and has shown no evidence of spread).

I consulted with both Mayo in Jacksonville and a local cancer center nearer to me. Since it seemed they were basically to follow the same course of treatment, I opted for closer to home. I had a very good response to the folfirinox regimen as well as the radiation, with my CA 19-9 dropping to 9 at one point (as of last blood test in August it was 11-13).

But, the bad news came when the tumor board declined to do the Whipple. They decided not to do anything further and monitor me. So back to Mayo I wentfor a second opinion, where last week I received the news that the Whipple WAS a very viable option. The MRI done at the (Jacksonville) clinic showed that there was no involvement of the artery as my previous surgeon had said. The surgeon at Mayo, Dr. Stauffer, said he would have no hesitation performing this surgery on a patient of my age (54).

I'm scheduled for surgery on November 10. Very nervous. I've never had any kind of internal surgery and other than the tumor am quite healthy, so I've been told the surgery should be relatively uncomplicated. Not sure what to expect pain-wise, although I have a pretty good pain tolerance and my immune system seems to be very strong.

Hello everyone.

I was diagnosed on December 28, 2020, while in Florida visiting family for the holidays. I had been having discomfort since September/October and assumed it was indigestion. It was persistent, so I thought it might be an ulcer and went online to look up my symptoms. They lined up with gallstones, which made sense to me since both my parents had gallbladders removed. The GI I saw thought that was the case as well, and ordered several tests to confirm. Delays due to the holiday schedule bumped the CT scan I was supposed to have back to January, so I drove down with husband and kids to spend the holidays, with the idea that if things got worse I could go to the ER. That's where I ended up, not realizing I was jaundiced (I'm slightly olive complected) but itching like crazy. A CT showed the mass on my pancreas, later confirmed to be adenocarcinoma head mass. (It was ruled locally advanced, borderline resectable, and has shown no evidence of spread).

I consulted with both Mayo in Jacksonville and a local cancer center nearer to me. Since it seemed they were basically to follow the same course of treatment, I opted for closer to home. I had a very good response to the folfirinox regimen as well as the radiation, with my CA 19-9 dropping to 9 at one point (as of last blood test in August it was 11-13).

But, the bad news came when the tumor board declined to do the Whipple. They decided not to do anything further and monitor me. So back to Mayo I wentfor a second opinion, where last week I received the news that the Whipple WAS a very viable option. The MRI done at the (Jacksonville) clinic showed that there was no involvement of the artery as my previous surgeon had said. The surgeon at Mayo, Dr. Stauffer, said he would have no hesitation performing this surgery on a patient of my age (54).

I'm scheduled for surgery on November 10. Very nervous. I've never had any kind of internal surgery and other than the tumor am quite healthy, so I've been told the surgery should be relatively uncomplicated. Not sure what to expect pain-wise, although I have a pretty good pain tolerance and my immune system seems to be very strong.

Hello @caryns and welcome to Mayo Clinic Connect. It sounds like you have been very proactive in getting treatment for cancer and that is commendable! Second opinions are so very important. I'm sure you are glad for the opportunity to have surgery at Mayo with a doctor who is confident about the Whipple procedure.

Other members of Connect have had surgery for pancreatic cancer and I hope that they can post with you. Here is a link to one of those discussions, https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/. As you read about their experiences please feel free to click "Reply" under the post if you would like to ask more questions or get more information.

I'd like to invite @marvinjsturing to discuss his surgery with you as well.

I'm just wondering, did the tumor board at the other hospital give you a reason as to why they did not want to do surgery?

Hi Teresa and Susan! Thanks for the welcome and links. I will check them out.

@hopeful33250 The previous surgeon seemed very enthusiastic about being able to operate when I first consulted with him (post-chemo and pre-radiation). Once I had completed radiation and he consulted with both his surgery group and the tumor board, he concluded that the tumor was unresectable due to the involvement of the hepatic artery as well as the mesenteric vein. He said they did not believe they could get clean margins.

I appreciate the added information,@caryns, I'm sure that you are pleased to find a confident surgeon to help you.

Will you keep posting with any questions, concerns or updates?

I appreciate the added information,@caryns, I'm sure that you are pleased to find a confident surgeon to help you.

Will you keep posting with any questions, concerns or updates?