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.

Husband had a failed whipple because the cancer was wrapped around the portal artery. We changed Drs. and now at Vanderbilt. The Dr there said he could do another Whipple and remove the cancer and the artery. The cancer has not spread anywhere else and he has had chemo and radiation. Just wondering if anyone else has had this procedure?

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@katiegrace

Please keep us updatd. Thank you.

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Just made it home. This doctor came in the hospital as I was leaving and is the surgical contact that his associate was talking to me about surgery. Dr Ali Ahmad, Wichita KS. He said I was a classic case of pancreatic cancer, and the mass was firm, and I needed surgery right away. He does the Whipple surgery and has done many of them and wants to go ahead and right away. He said there is no need to wait for a biopsy result. I most likely will call tomorrow and schedule this. I need to find out more about the surgery and the recovery. I would guess then that Chemo would be after that when they have the mass to check and match to a Chemo treatment.

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Please keep us updatd. Thank you.

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@gamaryanne

First, I will tell you to stay off the internet. Treatment of pancreatic cancer, if you have it, has come very far! Chemo, in general, is not what it used to be. Pre-meds are given prior to the actual chemo which are targeted to greatly reduce the initial symptoms most expected like nausea, stomach discomfort, etc.
IF you receive a diagnosis of Pcan be sure to seek an opinion/2nd opinion at a Pancreatic Center of Excellence. These centers can be found by contacting pancan.org. When you do, they will want to do genetic testing and also tumor testing to provide the best treatment plan. These are very important; you need to know your profile. Think positive, know there is great hope and know there are many survivors as the survival rate is increasing!
Lastly, if your faith has waned; get right with God. Ultimately, He is the great physician and will put the right people in your path.

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Thankyou for all the information. While health care in KS is not cutting edge I am on Medicare and can go anywhere that accepts it. I have an update. They did open my ducts and took a brush biopsy for cells in the area that is pushing up against the duct. They are sure enough that a surgeon has been called in. As soon as they get the lab back from the brush biopsy will determine the next step. If no cancer cells are found another Endo will be done for a biopsy of the growth. Then if that comes back with no cancer cells I am all clear and that is my only out. The other is as soon as they find cancer cells either with the brush or 2nd endo biopsy they will determine if it primary or secondary. And depending on type they will either do surgery first or Chemo first. So, they feel sure enough to proceed as quickly as possible with a pancreatic cancer diagnosis. The surgeon said they remove everything then go back and reconnect it all. I thought Whipple was just for the tail or left side. I am not in a hurry to leave this place but I am not going into a ton of medical debt to stick around. They did do another CT scan looking for more growths and have not said what the results were yet. I am being discharged before the surgery guy was going to come and talk about that.

Thanks a ton for the help and I will restrict my internet research to this site,

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@happyjack

Hello all.

I am an old guy from KS and single. So a little about why I am here and information I am looking for, I am really new to this. I am in the hospital waiting to have an Endoscopy done to open my pancreas ducts. I had a colonoscopy done last November with an endoscopy. I started having trouble after that and a few months ago was diagnosed with pancreatic enzyme deficiency. Ask doctors to check my pancreas but they blew me off on many occasions. Last Thursday I came to the ER for an INR of 9.0. I had blown all the vitamin K out of my system and pegged my INR. That went down with an IV of V K to 1.1. My range is 2-3. Blood work from ER Doctor came back with a bilirubin of 12. That has been going up by 2 each day I have been here. Seem the right side of my pancreas is enlarged. And the pressure has closed the ducts. I have been on pancreas enzyme replacement meds for several months. I could not get doctors to look at my pancreas until now. They did an ultrasound and cat scan. And there is a fiber's growth in the right (my) side or head of the pancreas that is pushing on the ducts. They are proceeding as everything seems to indicate it is cancer. Oncologist is being called in and I will find out when I go see them later. Another endoscopy will be scheduled for an ultrasound of the growth and then there will be a biopsy done to nail the lid down tight. So this is in the head not the tail and I have read it is not at a place that is operable. Really don't know much now. I have read that this cancer can go really fast. Just looking to fine some information on what to expect. Radiation? Chemo? Is any of those worth the side effects having done? How much time do I have to get things ready for leaving. What are the bad things that are ahead? Any info will help. Thanks.

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First, I will tell you to stay off the internet. Treatment of pancreatic cancer, if you have it, has come very far! Chemo, in general, is not what it used to be. Pre-meds are given prior to the actual chemo which are targeted to greatly reduce the initial symptoms most expected like nausea, stomach discomfort, etc.
IF you receive a diagnosis of Pcan be sure to seek an opinion/2nd opinion at a Pancreatic Center of Excellence. These centers can be found by contacting pancan.org. When you do, they will want to do genetic testing and also tumor testing to provide the best treatment plan. These are very important; you need to know your profile. Think positive, know there is great hope and know there are many survivors as the survival rate is increasing!
Lastly, if your faith has waned; get right with God. Ultimately, He is the great physician and will put the right people in your path.

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@gamaryanne

Thank you! I had a spot in the Revolution Medicine 9805 trial but lost it due to not enough “measurable disease”. I am told it is the most favorable just now. Was hoping there was something available outside of trials. Always looking and preparing for the reoccurrence.

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I think it was RevMed that had a section about expanded access on their web page that said they didn't provide that sort of program; they want all use to be part of a clinical trial.

There might be something available to you in the Elicio drug AMPLIFY trials. I hope so!

That is so frustrating about "measurable disease." It's not described clearly enough in any of the trial posts. I learned the real criteria for that means measurable on that institution's equipment and big enough to see a change if it happens.

I was in a similar boat with tumors meeting the trial's 1 cm criteria on another institution's MRI but only appearing as 0.9 cm on the trial center's CT. You're in that limbo of hoping your disease gets bad enough to qualify for the trial, but not so bad you go past the point of no return. Nerve-wracking to say the least!

Hang in there; wishing you the best!

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Hello all.

I am an old guy from KS and single. So a little about why I am here and information I am looking for, I am really new to this. I am in the hospital waiting to have an Endoscopy done to open my pancreas ducts. I had a colonoscopy done last November with an endoscopy. I started having trouble after that and a few months ago was diagnosed with pancreatic enzyme deficiency. Ask doctors to check my pancreas but they blew me off on many occasions. Last Thursday I came to the ER for an INR of 9.0. I had blown all the vitamin K out of my system and pegged my INR. That went down with an IV of V K to 1.1. My range is 2-3. Blood work from ER Doctor came back with a bilirubin of 12. That has been going up by 2 each day I have been here. Seem the right side of my pancreas is enlarged. And the pressure has closed the ducts. I have been on pancreas enzyme replacement meds for several months. I could not get doctors to look at my pancreas until now. They did an ultrasound and cat scan. And there is a fiber's growth in the right (my) side or head of the pancreas that is pushing on the ducts. They are proceeding as everything seems to indicate it is cancer. Oncologist is being called in and I will find out when I go see them later. Another endoscopy will be scheduled for an ultrasound of the growth and then there will be a biopsy done to nail the lid down tight. So this is in the head not the tail and I have read it is not at a place that is operable. Really don't know much now. I have read that this cancer can go really fast. Just looking to fine some information on what to expect. Radiation? Chemo? Is any of those worth the side effects having done? How much time do I have to get things ready for leaving. What are the bad things that are ahead? Any info will help. Thanks.

REPLY

Thank you! I had a spot in the Revolution Medicine 9805 trial but lost it due to not enough “measurable disease”. I am told it is the most favorable just now. Was hoping there was something available outside of trials. Always looking and preparing for the reoccurrence.

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There are various drugs targeting various branches of the RAS pathways (e.g. KRAS, NRAS, etc)

Within the KRAS family some are now targeting multiple sub-branches, so you might see them referred to with an "X" where something like KRAS G12X might include G12C and G12D, or maybe as a "RAS-MULTI(ON) inhibitor."

Elicio Therapeutics has two: https://elicio.com/pipeline/eli-002/

ELI-002 (targets KRAS G12D, KRAS G12R, NRAS G12D, NRAS G12R)
https://clinicaltrials.gov/study/NCT04853017 (AMPLIFY-201)

ELI-002 7P (targets 7 K(N)NRAS types: G12D, G12R, G12V, G12A, G12C, G12S, G13D)
https://clinicaltrials.gov/study/NCT05726864 (AMPLIFY-7P)

Revolution Medicines also appears to have two: https://www.revmed.com/pipeline/
RMC-6236 https://clinicaltrials.gov/study/NCT05379985
RMC-9805 https://clinicaltrials.gov/study/NCT06040541

Some more discussion here: https://connect.mayoclinic.org/discussion/promising-news-on-targeting-kras-g12d-mutations/

Noted in that thread that 97% is a bit high;

"K-Ras mutations are extremely common in pancreatic cancer, explaining 90% of cases. Nearly half of all pancreatic cancers are caused by K-Ras-G12D"

The ELI-002 pipeline link contains, "Seven KRAS driver mutations are present in 25% of all solid tumor cancers and are found in 88% of pancreatic ductal adenocarcinoma (PDAC) cases." I think those are the seven (G12D, G12R, G12V, G12A, G12C, G12S, G13D) targeted in the AMPLIFY-7P trial.

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KRAS G12D-does anyone know of a an inhibitor or other therapy in research for this mutation when one does not have BRCA mutations? It is found in 97% of pancreatic patients and is often the only one found.

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