Pancreatic Cancer Group: Introduce yourself and connect with others

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!

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.

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,

Please keep us updatd. Thank you.

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.

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?

cpill,

Perhaps the first surgeon was not at a pancreatic cancer center of excellence?

My understanding is surgeons at centers are sometimes able to do Whipples with arterial involvement - depends on patient specifics.

Yes he is going to give it a try at Vanderbilt in Nashville

I have an appointment next Thursday the 13th to talk to the doctor some more. He wants to talk more to me before scheduling the surgery.

Does anyone know if there's a funding program for patients that have insurance except patients insurance won't cover it.My friend is in the hospital for 4th time for his pancreatic ..this hospital is good sometimes and other times you could be there for 5minutes and out the door with no answer. Please any help would be appreciated..im gonna keep trying to help my friend get down to theMayo Clinic ..Thank you all