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.
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.
Yes! I am on it now. And I am in a thread with many others on it in various cohorts. I have been on it since July 8 doing the combo RM 9805 and RM 6236. Great results. It has demolished a lung tumor and 40% shrinkage in liver tumor. Others are having similar results. I can tell you where the sites are if you would like to DM me.
Even if it clears my tumor I am going to ask for compassionate use. It is systemic but works differently than chemo.
Lastly, I have also done Gem/abraxane. For me the side effects were much easier than folfurinox. But we are all different….
Depending on where the liver tumors are, SBRT is also an option. This was offered to me but I opted to go to Revolution Medicine trial drugs instead.
Wonderful! How do I DM you?
Good morning! When is the next virtual pancreatic cancer support group please?
Where are you receiving your kras mutation clinical trial please! Thank you!
Hello, I am doing the trial through Carolina Biooncology. It is a group that has focused on stage 1and2 trials for quite some time. It is also at Sarah Cannon hospital in nashville, Next Oncology in Texas and Virginia, MD Anderson and other places. Check NCI.org and put on trials for pancreatic cancer. Or go to Revolution Medicines.com. You will find information on their KRAS drugs in development and it will redirect you to NCI I believe. I am doing both drugs, the G12D specific and the Pan KRAS that targets several including G12V.
This is not a known cure. But it is another systemic tool in the box that is proving to shut down this cowboy for a good while with little side effects. it buys time while we wait for the next big thing.
For many it’s getting them to SBRT or surgery because of its ability to shrink tumors.
It has decimated a small tumor in my lung .
Hi
Is there a way I can follow you to keep up on your trial information? I don’t know which arm my husband will be randomized into when it opens up at MSK but it’s always helpful to know what’s going on in any of the arms.
I am trying to get onto one of the RMC-6236 clinical trials either at Sloan Kettering or Dana Farber, both are enrolling and are not too too far from where I live in Ottawa Canada. I spoke with my surgeon today, asked if there were a choice between getting on gemcitabene/abraxane or RMC-6236, which would he choose? He said go for the newest treatment, RMC-6236, and I can always fall back onto gemcitabene/abraxane if necessary.
Is RMC-6236 in pill form? Do I have to be at the hospital to take it, or can I take it at home?
Thanks so much for any info or comments you have!
My husband is currently going through his second dose of chemo for state 1 pancreatic cancer. He will have possible 4 months of chemo before Whipple to try and see if the long term diagnosis is better than currently.