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amysue77777
@amysue77777

Posts: 5
Joined: Oct 30, 2016

Anyone had pancreatic cancer treatment at mayo?

Posted by @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.

Liked by amysue77777

REPLY

Hello @amysue77777,

I am so sorry for all that your brother, and you, are going through. I truly admire your strength, determination, and support that you have for your brother, and wish you both well in this struggle.

Every person’s cancer journey is so unique, and we are glad that your brother will be seen at Mayo Clinic soon.
In the meantime, I’d like to introduce you to @SJG, @Ronmac, @jimde, @ut3cordova, who’ve been talking about pancreatic cancer on this discussion too:
http://mayocl.in/2f1IpVZ

Did you know that Mayo Clinic had a “Living with Cancer” blog:
http://mayocl.in/2fkklRr
Also, here is a video, (on Mayo Clinic’s website), about a pancreatic cancer survivor, which I hope you will find helpful:
http://mayocl.in/2e1Wlg6

@amysue77777, do you and your brother have other good support around at home? Is he continuing chemotherapy until he gets to Mayo Clinic?

Liked by amysue77777

I have a friend going through pancreatic cancer treatment now. He went to John Hopkins. First he had chemo, then the Whipple surgery and now finishing up with more chemo. It has been brutal but now is doing much better. The same chemo and surgery is being done at Mayo MN so you will be in good hands if you get your brother to Mayo ASAP.

Nancy Shermoen~

Amy Sue, In addition to the information you already got from Kanaaz and Nancy, I might add that you can call Mayo Clinic appointments (http://mayocl.in/1mtmR63) and ask if the oncologist with whom you have an appointment would talk to your brother’s local doctors. Mayo Clinic experts mentor providers all over the world and will work with local physicians who maintain your care in between key appointments at Mayo for surgery or consultation and testing. While you haven’t been to Mayo yet, it might be worth a try to continue chemo as suggested until his appointment in December.

Liked by amysue77777

Hello @amysue77777. I am not very good at using this application and therefore I just saw your post. First of all, your brother is lucky to have a sister who is as determined as you are. My experiences with dealing with doctors and medical institutions have been most successful if I emphatically express an appropriate sense of urgency. Is the absolute best that Mayo can do is an appointment in December?
Were you given time to adequately describe your brother’s declining status? If December is the absolute best they can do…then obviously you must accept that. The good news is that they are a world class institution and you will have given your brother his best shot at extending his life.

@colleenyoung

Amy Sue, In addition to the information you already got from Kanaaz and Nancy, I might add that you can call Mayo Clinic appointments (http://mayocl.in/1mtmR63) and ask if the oncologist with whom you have an appointment would talk to your brother’s local doctors. Mayo Clinic experts mentor providers all over the world and will work with local physicians who maintain your care in between key appointments at Mayo for surgery or consultation and testing. While you haven’t been to Mayo yet, it might be worth a try to continue chemo as suggested until his appointment in December.

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Yes thank you. I believe the oncologist he is assigned to has spoken to his local doctor here. He is continuing a new chemo until we fly out. Appreciate all advice.

@jimde

Hello @amysue77777. I am not very good at using this application and therefore I just saw your post. First of all, your brother is lucky to have a sister who is as determined as you are. My experiences with dealing with doctors and medical institutions have been most successful if I emphatically express an appropriate sense of urgency. Is the absolute best that Mayo can do is an appointment in December?
Were you given time to adequately describe your brother’s declining status? If December is the absolute best they can do…then obviously you must accept that. The good news is that they are a world class institution and you will have given your brother his best shot at extending his life.

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Thank you. Yes I was wondering if they knew how bad he was. The way i understood it from my brother is he is to continue chemo treatment for a month and when we get to mayo for a scan. I do believe though I am going to call tomorrow and see about getting in sooner. It won’t hurt that’s for sure. Thank you again for all the advice. Much appreciated.

@kanaazpereira

Hello @amysue77777,

I am so sorry for all that your brother, and you, are going through. I truly admire your strength, determination, and support that you have for your brother, and wish you both well in this struggle.

Every person’s cancer journey is so unique, and we are glad that your brother will be seen at Mayo Clinic soon.
In the meantime, I’d like to introduce you to @SJG, @Ronmac, @jimde, @ut3cordova, who’ve been talking about pancreatic cancer on this discussion too:
http://mayocl.in/2f1IpVZ

Did you know that Mayo Clinic had a “Living with Cancer” blog:
http://mayocl.in/2fkklRr
Also, here is a video, (on Mayo Clinic’s website), about a pancreatic cancer survivor, which I hope you will find helpful:
http://mayocl.in/2e1Wlg6

@amysue77777, do you and your brother have other good support around at home? Is he continuing chemotherapy until he gets to Mayo Clinic?

Jump to this post

Yes he continuing chemo until we get there. Unfortunately his wife is not being supportive from what I can tell. I don’t know if it’s her way of handling the situation or not, but she is never home and he is falling constantly. (And she doesn’t work). Trying not to let that bother me but I do live 3 hours away and work 2 jobs. I’ve been giving him my check from my second job for about a month now, but these 16 hr days are starting to catch up with me I think. But I will continue to do what I can to help him. I love him dearly and just hope I can get him some help soon. Thanks for the blogs, videos, etc. very much appreciated.

@upnorthnancy

I have a friend going through pancreatic cancer treatment now. He went to John Hopkins. First he had chemo, then the Whipple surgery and now finishing up with more chemo. It has been brutal but now is doing much better. The same chemo and surgery is being done at Mayo MN so you will be in good hands if you get your brother to Mayo ASAP.

Nancy Shermoen~

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Thank you very much. I always feel a little better hearing things like this.

Is there anyone who has experienced this cancer and had chemo, radiation and surgery? My tumor has decreased in size and my tumor markers are down to 600 from 9000. I need support and know the Mayo is the best place for me to have the surgery. Thank you

@tammyp11

Is there anyone who has experienced this cancer and had chemo, radiation and surgery? My tumor has decreased in size and my tumor markers are down to 600 from 9000. I need support and know the Mayo is the best place for me to have the surgery. Thank you

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Welcome to Connect, @tammyp11.
You’ll notice that I moved your message to the Cancer group in a discussion about getting pancreatic cancer treatment at Mayo Clinic. In this discussion you’ll meet @amysue77777 @jimde @upnorthnancy. I encourage you to read this patient’s story about getting treated for pancreatic cancer at Mayo Clinic http://mayocl.in/2l4SDG1

You may also wish to take part in these discussions on Connect:
– I have just been diagnosed with pancreatic cancer http://mayocl.in/2f1IpVZ
– Pancreatic Cancer Stage IV http://mayocl.in/2kRV1Vl

First, let’s get to know a bit more about you. I’m so happy to hear that the tumor markers have decreased. What treatments have you had? What stage or location is your tumor?

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

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.

@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.

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

@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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