Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Connect
Hi - I am new to this site. I have stage 4 pancreatic cancer and have been stable for 9 months on Abraxane and Gemzar. 3 weeks ago I was told that I would not be receiving Abraxane for an unknown amount of time due to a national shortage by Bristol Myer Squibb. Has anyone else been affected by this shortage???? Thanks
We live about 5 hours away. I will post when we have an appointment scheduled with the Mayo Clinic. Our doctor was supposed to fax records over today so maybe we will hear from them tomorrow.
-
Like -
Helpful -
Hug
2 ReactionsThat sounds wonderful, @cindysavant. Do you live very far from Mayo?
I look forward to hearing from you again. Will you post an update when you know about your appointment time?
-
Like -
Helpful -
Hug
1 ReactionWe called Mayo Clinic today and they are supposed to call in next few days for apptmt time hopefully.
-
Like -
Helpful -
Hug
2 ReactionsYes
-
Like -
Helpful -
Hug
1 Reaction@cindysavant,
Do you think that you might be able to get a second opinion on his cancer?
Thanks you for getting back with me. Yes, he has a mass in his liver (appx
10 cm). There are lesions in his rib, his lung, some area in bone and head
of pancreas.
-
Like -
Helpful -
Hug
1 ReactionHello @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.
-
Like -
Helpful -
Hug
1 Reaction