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Pancreatic Cancer Group: Introduce yourself and connect with others
Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Pull up a chair. Let's start with introductions.
When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?
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Hello @cindysavant and welcome to Mayo Clinic Connect. I can certainly understand the concern you have shared about your husband's treatment plan. Have you considered getting a second opinion? I would recommend that you visit a Cancer Center of Excellence and get a second opinion from an oncologist with a background in research and vast experience in treating this type of cancer.
Here are some websites for the American Cancer Society and National Pancreas Foundation.
https://www.cancer.org/
https://pancreasfoundation.org/about/
If you search their websites or call them they can undoubtedly direct you to some specialists in your area to assist you in determining the best treatment for your husband.
As you know, some people do have remarkable life spans after their diagnosis depending on the location of cancer within the pancreas.
Do you know the location of your husband's pancreatic cancer?
Sorry to hear about your husband. Unfortunately, folfirinox and gemcitibine/abraxane are "the standards of care" for pancan. Many oncologists won't stray from the standard even though their success rates are poor. Find an oncologist who thinks out of the box or a trial if you're dissatisfied. My wife had 9 folfirinox, sbrt, surgery (2x) and 15 gemcitibine/abraxane/cisplaten treatments. We started the tippen protocol a month ago while still doing GAC (won'tt be telling the oncologist). You have a long fight ahead. Stay strong. Good luck and prayers for your husband and family.
Hello, my name is Cindy and my husband was diagnosed with Stage 4 Pancreatic Cancer in June 2021. We have gone through 3 months of the 5-Fu chemo. Just had PET scan and CT scan results show that chemo didn’t decrease the cancer; however, doctor said it showed a slight increase since June. The doctor changed medication to Gemzar/Abraxane. He’s had 1st chemo with this new (but older) medication and doesn’t get as sick but still feels yucky (as he puts it). I’m concerned as his caregiver that this new medication will be like the old and then we will have wasted more months when with Pancreatic Cancer one doesn’t have months to lose in fighting it. Am searching for what to do. Have even heard of dog worming medicine as an option (Joe Tippen Protocal) but doctors are against that. I’m having trouble trusting conventional chemo methods but do not want to jeopardize my husband’s life. Speaking of jeopardizing, I read Alex Trebek’s book and he lived 20 months with it but I can’t find anywhere in his book what his treatment was to go 20 months. Anyone have any experience or ideas as to where to go from here? My husband is 62 and is supposed to retire in November 1st this year. I just hate to see him so tired all the time. Wish there was something I could do. I did email Emory (as we are closer to Emory) about a clinical trial 3 days ago and have not heard a word back. Afraid if we go for a clinical trial or go with Mayo we will be starting all over and the medicine will be delayed. Sorry for such a long post but these are very real concerns from a caregiver who truly wants to add years to her husbands life. I need him as do his 3 children and his 5 grandchildren. Thanks in advance for reading such a long post.
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1 ReactionMy wife was prescribed Reglan recently and she chose not to take it because the common side effects are significant. Be sure to read the drug literature and speak to the oncologist with any concerns.
My wife had IORT during her surgery. There are very few operating rooms with the capability so it isn't that common. Between her chemo, SBRT and IORT, all of her margins were clean. Unfortunately she had recurrence a year later. Pancan is rough so hitting it with everything in the limited arsenal is needed. Good luck.
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1 ReactionHi @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.
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1 ReactionHello @annebauer19
I'm glad to hear that this conversation has been helpful to you. Yes, I agree, that getting a second opinion is always good. It is important that your second opinion is from a very reliable source.
For example, if you live near a large, research-oriented medical facility such as a university medical center or a well-known cancer center, this is the best place for a second opinion. Most of us know about the great reputation of Mayo Clinic, but if the distance is a problem for you, look for another facility closer.
Here are the websites for both the American Cancer Society and the National Pancreas Society. Both will help you find Centers of Excellence in your area. It is important to research and know the best providers.
https://pancreasfoundation.org/about/
https://www.cancer.org/
Perhaps other members will address the specific types of treatments that your husband is taking so that they can compare notes and side effects. Has your husband's oncologist been told of the side effects?
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.
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1 ReactionAbsolutely!
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1 ReactionI 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.
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