Pancreatic Cancer Group: Introduce yourself and connect with others

Hi @annebauer19

I had the same radiation your husband is having now, with Xeloda (capcetabine) - are those the pills he is taking?

I had a rough time with the chemo pills, mainly because they caused my blood vessels to constrict and I had to be put on a low dose of amlodypine to counteract that. But it also caused me stomach discomfort.

My oncologist surmised that i might be experiencing some delayed gastric emptying. She said sometimes the radiation causes the pyloric sphincter (the muscle at the bottom of your stomach) to constrict and not empty into the intestine as it should. She prescribed Reglan which seemed to help. I was also on carafate which coats the stomach, which helped a little.

My stent was failing unbeknownst to anyone while i was undergoing radiation, so I suspect this might have been at least part of the cause for some of my tummy troubles. Once they replaced it a lot of my issues got better. Of course this also happened near the end of my radiation so maybe cessation of treatment helped too.

My surgeon at Mayo told me that they would likely do something called intraoperative radiation therapy during the course of my procedure. I'm going to be meeting with a radiological oncologist and I'll find out more about this, but from what I've researched it's more effective than external radiation because it's very hard to reach the pancreas. They can also shield the more delicate organs from damage with this procedure.

I don't know if my previous surgeon had been planning to do this but I'm wondering if it's something that your husband would be suited to. Something to inquire about at any rate.

Hello all: the discussion about different people's response to surgery has been helpful. My husband is very nervous about the surgery and we are not there yet. And I think we will get a second opinion if we are told surgery is not an option..Right now my husband is getting radiation but it's the every day for 5 weeks kind not SBRT. He is also getting one of the chemo drugs orally. And he is having a harder time of it with regard to stomach pain and fatigue than we had anticipated. Anyone had any luck with treating these symptoms??
Any thoughts will be appreciated.

Hello all: the discussion about different people's response to surgery has been helpful. My husband is very nervous about the surgery and we are not there yet. And I think we will get a second opinion if we are told surgery is not an option..Right now my husband is getting radiation but it's the every day for 5 weeks kind not SBRT. He is also getting one of the chemo drugs orally. And he is having a harder time of it with regard to stomach pain and fatigue than we had anticipated. Anyone had any luck with treating these symptoms??
Any thoughts will be appreciated.

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?

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.

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?

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.