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Joined: Mar 11, 2012

Pancreatic Cancer

Posted by @livingforme, Mar 11, 2012

Please help share any information on what your experiences are in finding the best treatments, diet and avoiding triggers from Pancreatic Cancer.

Information is Educational and its about time Doctors stop saying this is the silent killer and allow mandatory screenings.



Posts: 2
Joined: May 29, 2012
Posted by @joeys, May 29, 2012

Hi, I also have pancreatic cancer diagnosed in Dec of 2011 by my GI Dr.and I was then refered to which ever would take me first, either Mayo or MUSC…. (Medical Universaty of South Carolina. I was called first to MUSC. They did a EUS and ERCP (put stint into my blle duct being I was turning yellow of my Billyruben up high.
Wasn’t to impressed with MUSC as the two DR’s oncologist and surgeon was not very personable and just heard dome and gloom of the disease. So got second opinion by going to Mayo in Jacksonville as I live about same distance from both
medical centers. Got up dated CT scan and MRI from Mayo and saw no spread to anywhere else on scans. So they took me off chemo for 5 weeks for the Whipple
surgery. So went down for the Whipple surgery and they first look laposcopy at the liver and they saw two spots on the outer surface like a couple drops of paint on the surface. They of course don’t go ahead with the surgery if they see that.
So they suggested to return home and take same chemo as it was reducing the tumor on the pancreas head better than they had expected. Did 5 chemo’s before went down for the surgery, and now suppose to do 8 to 9 more chemo’s to see where we are at that time. I’m present.y just finished the second since returning back home for another 8 to 9 sessions.
My chemo regiment is called FOLFIRINOX. My hopes it for it to clear the liver during these 8 or 9 more sessions and go again to qualify for the Whipple surgery to remove the tumor on the head of pancreas. I am now thinking now if I get to the surgery point again, I will either go to M.D. Anderson in Houston TX or Johns Hopkins in Baltimore. I want more of an expert surgeon that just a general surgeon but one with lots of experience.

Sara Butcher

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Joined: Jun 30, 2012
Posted by @sarabutcher, Jun 30, 2012

Hi, my mom just had an unltrasound tonight, 6-29-12 and they said she has a growth on her pancreas that is small but will will require her to go in for endoscopy this Tuesday. They suspect pancreatic cancer. My sister and I are terrified and want to make sure we get the best care possible for her. We have also heard that Dr. Cameron at Johns Hopkins is the best. Were you able to see him? How are you doing now? Has the chemotherapy qualified you for the whipple surgery? My best to you.
Sara B.


Posts: 2
Joined: May 29, 2012
Posted by @joeys, Jul 1, 2012

Hi Sara
Sorry to hear about your Mom. Hopefully it turns out to something different and not caancer. Sometimes it’s pancreatitus. I was hoping that’s what I had. But not so.

After I came back from Mayo, I’m currently still taking chemo sessions every other Wednesday. I have completed 4 treatments since I came back and so am now about half way through chemo treatments until get the next CT scan.. So have little while yet before going for a CT scan to see where we are far as improvements.

I have looked up several treatments you might want to investigate. Of course
the whipple if for removing a tumor on head of the pancreas. If tumor is in the middle or tail of pancreas they can do a “distal” and (not sure of the spelling).
Also you may want to check out “nanoknife procedure”, Radio Frequency Ablation” which is very least inavasive like a needle that they guide into the tumor and “tines” come out of a tube and it works like a microwave, it cooks the tumor and don’t have to go in and take the dead tissue out. Guess it disolves or turns into like scar tissue.

Yes, I have read things about Dr. Cameron is the best at Johns Hopkins.
I’m hoping to go there or M.D. Anderson in Houston TX which is the # 1 rated cancer hosp. by U.S. News ans World report.

Thing is for me, the CT scan or MRI did not pick up the couple spots on my liver because it was on the surface they said..
So can’t 100% go by just the scans. Now I need to hunt the best surgeon that
specialize in the liver plus the pancreas. Just hoping for a miricle to get to that point. Certainly surgery is the best chance for cure.

Feel free to e-mail me direct at or even if you want to call I will be glad to talk about research I have done so far.

After they do a EUS on your Mom, they should know more about the size, and what stage e.t.c. Yes It’s a very scary situation to be in. At first I didn’t want to read anything, I just wanted to be fixed. But found out it’s better to research all options and types of treatments to get the best outcome.

Also feel free to call me if you wish. I live in S.E. Georgia and usually up to about
midnight eastern time if you wish to talk. Certainly I don’t mind.
Joey S.

Liked by Joey_S.

Sara Butcher

Posts: 2
Joined: Jun 30, 2012
Posted by @sarabutcher, Jul 2, 2012

Hi Joey,
Thank you so much for responding and for the information you provided. It sounds like you have done a lot of work gathering important information and I appreciate your willingness to share that as well as your personal experience in going through this process. I am so glad you got a second opinion and are now on a course that will lead you closer to the surgery. The chemotherapy must be quite difficult, but it is encouraging to hear that there are options available. I wish you the best in going through this.
We are anxious for my mom’s test tomorrow which will entail a camera going down her throat to determine the size and stage. She has the same blockage you described and is turning yellow from the Billyrubin as well. She has no appetite but I did make her several chicken broth soups with vegetables yesterday that she seemed to like eating. Have you made any dietary changes that are helpful in going through the treatment?
After seeing your email, my sister contacted Anderson in Texas and was told that because my mom has Kaiser with a medicare backup, they will not see her. Apparently they have a bad relationship with Kaiser and other hospitals in the country do as well. This is of course very disturbing since we want to give my mom the best treatment available. Perhaps payment with cash is an option. I hope that you have good insurance for your treatment and it sounds like you do.
I will let you know what happens with my mom’s test tomorrow and I a would be happy to talk to you via phone as well. Our family lives in Portland, Oregon so we have a 3 hour time difference, but it would be great to talk after we know more.
All the best to you this week and thank you for your support.

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