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?
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Hi, I was diagnosed with stage 2 pancreatic cancer in December 2023. Had clinical trial immunotherapy in January, and modified Whipple surgery in February 2024. 26 lymph nodes were removed, cancer was in 3 of them and in some nerve tissue - however, all my margins were clear. I began 12 rounds of Folfirinox on April 6th, just finished on September 13th. CA19-9 before Whipple was 162, after Whipple went down to 5,8,11. CT scans showed no recurrence or metastases - until my October 2nd CT scan which showed 2 lesions on my liver, 1.5 cm and .5 cm. I am interested to know whether anyone has had surgical or other treatments for pancreatic cancer metastases to the liver, and any outcomes? Thank you.
My otherwise healthy daughter was diagnosed earlier this year with stage 4 pancreatic cancer when going to the hospital with severe abdominal pain. I have found this group informative as patients share results of various treatments, much of it guided by particular mutations either inherited or within the tumor itself. There are various types of chemo drugs and PARA inhibitors designed to target one's cancer. It seems to be a trial to test and see what works best. I am encouraged that there options to try that were not available even a few years ago.
I wrote about my brother Frankie who has pancreatic cancer he had the Whipple surgery August 16 my brother is now in the facility small skilled hospital and he still hasNot recovered they took him by ambulance to see his surgeon and they are now saying that if he can’t gain strength to be able to walk and gain weight he will miss the three month window to start chemo I didn’t know about the timeframe of when you need to start Chemo we are keeping him in this facility for one more week and then we are bringing him home where he can be in a loving nurturing environment and we will take care of him we are praying for a miracle and I am Praying for everyone that is going through this Be aware of your loved ones recovery some facilities will not encourage them to eat the small meals they need to to maintain their body weight or gain weight and And will not get them up to walk and have physical therapy you can’t just lay in bed And some facilities will not have the kind of physical therapy you need after the Whipple surgery
Hi Carol, don't be scared, I'm stage 4, and I've had 12 chemo treatments and it's going well. But life will be harder, the end will be good. Think well, of course nothing will ever be the same. Read the articles about the side effects of chemotherapy, and tell anyone who can help you. I wish you good health.
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I spoke with my oncologist today after receiving the news that my cancer had spread to my liver despite my 12 rounds of Folfirinox. Turns out it has also spread to the soft tissue in my belly. So surgery is not an option. They are starting me on gemcitabene nab-Paclitaxel in 2 weeks. I understand the side effects of this cocktail will be worse than the Folfirinox. And my chances of good response are getting slimmer. My oncologist mentioned a new class of drugs that will be coming out at the end of the year that target the KRAS mutation, and I may be a candidate for that. Anyone have experience/knowledge of this new treatment?
There are a number of targeted treatments in clinical trials for KRAS mutations. The most common KRAS mutations for pancreatic cancer are G12D, G12V and G12R in that order. G12C was the first that became targetable a few years ago and occurs in only 1-3% of pancreatic cancer patients with a KRAS mutation.
The trial your oncologist is likely referring to is Revolution Medicine RMC-6236. It is expanding into phase III and is a pan-KRAS targeted therapy having effect on multiple KRAS variants. Another trial is RMC-9805 and there is one combining the RMC-6236 drug and the 9805 drug. Muratti Pharma has a G12D targeted therapy called MRTX-1133.
There are a number of KRAS trials coming on line. Check with PanCan.org and TriCanHealth.com that specialize in clinical trial searches for pancreatic cancer trials.
Has anyone had experience with the RMC-6236 clinical trials targeting the KRAS mutations? Mine is KRAS G12V.
Wow, I am impressed as someone who also went home with the 3-day chemo treatment; I outed after 2 sessions. I think you are right--the swimming was immensely helpful. Good for you, I bet it was difficult some days. I was practically comatose and as I am 84, decided that was enough. A year and half later still OK and enjoying life with 1 radiation treatment (no bad effects) on a mass in my mesentery, not biopsied (dangerous area) but presumed cancerous.
One of the treatment methods for liver tumors is Microwave - Radiofrequency ablation (RFA), known as “Burning”, that is, the method of destroying the tumor by burning. Today, RFA is a method that we commonly use in diseases such as colon cancer, liver metastasis and HCC. The priority in liver cancer is surgical treatment,
My doctor suggested it, we're in the same situation. I live in Turkey
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Yes, my oncologist is telling me that he'd like to use either microwave, radiation or the radioactive beads on the tumor on my liver. Thing about CT scan is that it is extremely hard to see small metastases in the peritoneum on a CT scan. Dr. Alewine at the NIH told me this and my oncologist is in agreement. So, he's trying to get me set up for another laparoscopic surgery to physically inspect that area for this. If there are none there, he wants to move forward with the radiation, microwaves or beads on the liver tumor. If there are small metastases in my peritoneum, then I guess it's back to chemo. I would not like to go through chemo again. And carrie40, your post gives me something to hope for. Thanks.