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.

@betsteff

Where are you receiving your kras mutation clinical trial please! Thank you!

Jump to this post

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 .

REPLY
@gamaryanne

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….

Jump to this post

Where are you receiving your kras mutation clinical trial please! Thank you!

REPLY

Good morning! When is the next virtual pancreatic cancer support group please?

REPLY
@gamaryanne

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….

Jump to this post

Wonderful! How do I DM you?

REPLY

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.

REPLY
@dalegantous

Has anyone had experience with the RMC-6236 clinical trials targeting the KRAS mutations? Mine is KRAS G12V.

Jump to this post

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….

REPLY
@hakanb

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

Translate deepl

Jump to this post

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.

REPLY
@dalegantous

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.

Jump to this post

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

Translate deepl

REPLY
@56pan

Here's my experience with Folfirinox. I was diagnosed with stage 4 pancreatic acinar cell carcinoma in Sept. of 23. I started 12 cycles of Folfirinox that ended in early April of this year. I was 74 when I started the chemo. I tolerated it well but still have some aggravating peripheral neuropathy. It's a 3 day chemo session actually. 1st day is the infusion in the cancer center. Then I went home with the pump for 46 hrs. After the pump was off, I forced myself to go to the YMCA and continue my daily long swimming exercise. I'm convinced that helped me more than anything to withstand the chemo. You_have_to try to keep your body strong. When I started the chemo, the last CT scan showed a 7.3 cm X 3.5 cm tumor on my pancreas, several cancerous lesions on my omentum (abdominal wall, I think) and 3 cancerous lesions on my liver. Biopsy confirmed all findings as cancer. At the end of chemo in April, the CT scan showed no evidence of any tumors except one remaining on my liver. My oncologist wants to have another laparoscopic exploratory procedure to check for cancer in my peritoneum and if none is present, proceed with radiation, microwaves or radioactive beads to try and get rid of the tumor on my liver. My understanding is that cancerous nodules/lesions, whatever are extremely hard to detect in the peritoneum with a CT scan. Chemo can be tough. I wish you well, ma'am. Keep your body strong.

Jump to this post

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.

REPLY

Has anyone had experience with the RMC-6236 clinical trials targeting the KRAS mutations? Mine is KRAS G12V.

REPLY
Please sign in or register to post a reply.