Anyone had pancreatic cancer treatment at mayo?

Posted by amysue77777 @amysue77777, Oct 30, 2016

My brother 56 yrs old was diagnosed with pancreatic cancer in May this year (2016). He hasn't gotten a second opinion yet. We are in a small town that isn't too advanced. The tumor was 3 cm on the head by the bile duct. They put a stent in and the plan was to take chemo to shrink the tumor and then surgically remove it. After 3 months of chemotherapy, (and I watched him suffer terribly) they did a scan and apparently this chemo treatment did nothing for him. In fact they are saying it got worse and they are not quite sure what the spots are on his spleen etc. he is down to about 135 lbs. so now they are telling us it is inoperable because the tumor is basically connected to the vein that blood travels through. His doctor said he would give us a referral to anywhere we wanted except the cancer centers of America. Why I do not know. So we chose Sloan in nyc. After 4 days of waiting for that appointment I finally a called the doctor. After going through several channels he is now saying nyc will not see you. He supposedly sent them his records and they are saying they won't touch him. After hearing this I was bound and determined I was going somewhere else if i had to pick him up and drag him there. I think he was extremely discouraged. He collapsed on the way out of the office that day. I was devastated. I immediately called the mayo clinic for an appointment. It didn't take long for his dr to get them what they needed. I had made my point clear by then I think. They received everything on a Thursday and that following Monday (10/24/16) he got the call from the mayo. We got an appointment for 12/5/16. I immediately booked the flight (traveling from upstate ny) and the hotel.
This past Thursday he was suppose to receive a different kind of chemotherapy. He got all the way there to find out they didn't even have he medicine. Unreal huh? He went the next morning and got it (Friday) and while he was there his dr came in and said we will do a scan before you go to the mayo because if the chemo hasn't helped there is no sense in traveling to the mayo clinic. Why does he not want us to get a second opinion??? I am not allowing that to happen because the mayo said continue chemo until you get here and we will do a scan here. I am not allowing these small town doctors to screw around any longer. Please please if anyone has been through this give me some advice. I am so devastated. He was self employed and has not been able to work to support his family. He can barely walk.
I am his younger sister 47 years old and come health issues myself, fortunately not cancer. But I am bound and determined to get him the best possible care. We only have our mom left who is 85 years old and so sad to see her son go through this.
Please if anyone out there can tell me anything at all I would be so appreciative.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

it's such a shock to be diagnosed but we just have to fight and fight hard but it's getting tiring.

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Hi there, I'm new to all this ...but nice to email you. I have gone thru 13 times of chemo and finished with that now next step is Mayo for proton radiation for 5 weeks and month off and then surgery. I am worried about the surgery just knowing its an extensive whipple but praying it goes well. I hope you are doing well...tell more to me about you.

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@tammyp11

Hi there, I'm new to all this ...but nice to email you. I have gone thru 13 times of chemo and finished with that now next step is Mayo for proton radiation for 5 weeks and month off and then surgery. I am worried about the surgery just knowing its an extensive whipple but praying it goes well. I hope you are doing well...tell more to me about you.

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Welcome back Tammy. What chemo did you have? How are you feeling? When do you start proton beam radiation?
That's a lot of questions. In short, we just want to hear how you're doing.

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I had proton radiation five days per week for 5 weeks feeling good now and eating. My surgery is scheduled for Aug 2 and it's coming up fast. I am worried but I have faith in God and my doctors just want it over with...Thanks

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@tammyp11

I had proton radiation five days per week for 5 weeks feeling good now and eating. My surgery is scheduled for Aug 2 and it's coming up fast. I am worried but I have faith in God and my doctors just want it over with...Thanks

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@tammyp11 Hi Tammy: Your concern is certainly understandable. I've had some extensive surgeries of the upper digestive tract and I know how difficult the anticipation is. I'm glad that your faith is placed in God and your doctors. I will pray for you as well. Do you know how long your recovery will be? Teresa

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