New ti group need advise

Posted by shell from Canada @shelleyderish, Jun 10 10:57am

My husband had a mass on pancreas 1-1/2 yrs ago but we were told to leave it and monitor by mri. 9 months after last MRI mass in pancreas has grown to 6CM .Also spleen ,& spots on liver they say 99.9% cancer
Had a EUS biopsy 2 weeks ago. Came back not usable. Having a liver biopsy done this Friday. Finally convinced to do blood work 19/9 tumour markers are 120,000! We seem to be going in big circles. We have appointment with oncology at cancer clinic next week I have contacted myself a Hepato/Pancreato/ Biliary surgery group as we want to know if surgery is possible with chemo. The group is triaging his case Our GP did not want to refer but I insisted GP says treat with chemo and if we can’t get a biopsy pallitive Does this seem right?

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

Your experience is so different from mine here in Virginia! I had a diagnosis within 24 hours of walking into an ED, and a surgeon in my room drawing Whipple plans all over a whiteboard that day! Surgery was first, then 5FU (12 rounds), then a chemo break before Abraxane/Gemzar (14 rounds), now on break again. C19-9 down to 37 from 496. I have gained some weight, exercise every day, sleep great, and will be ready to see what the oncologist says in about a week. The surgeon weighs in again next month! It was stage 4 with pancreas and 16 lymph nodes positive for cancer. I credit the fast moves that were made for me. I am 76+ and hanging in there for two years now, so keep moving forward!

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@nancyjane1

Your experience is so different from mine here in Virginia! I had a diagnosis within 24 hours of walking into an ED, and a surgeon in my room drawing Whipple plans all over a whiteboard that day! Surgery was first, then 5FU (12 rounds), then a chemo break before Abraxane/Gemzar (14 rounds), now on break again. C19-9 down to 37 from 496. I have gained some weight, exercise every day, sleep great, and will be ready to see what the oncologist says in about a week. The surgeon weighs in again next month! It was stage 4 with pancreas and 16 lymph nodes positive for cancer. I credit the fast moves that were made for me. I am 76+ and hanging in there for two years now, so keep moving forward!

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Nancyjane1 that’s such good news that you are doing so well especially with the generous lymph node involvement. You are lucky and two years gives me hope. Could you please share what facility you were treated at and what your tumor mutations are?

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Welcome shelleyderish,
I’m not familiar with facilities in Canada, and I wouldn’t want to slow down your progress of getting your husband’s liver biopsy this Friday, but sounds like you definitely need to find a center of excellence for pancreatic cancer. What is the overall physical condition of your husband, is he well enough to travel? Pancan.org is where you might want to start in order to find a pancreatic anger group/hospital to evaluate/treat your husband. I’m also stageiv with Mets to my liver, hepatic artery, and celiac artery though I was initially diagnosed at stage2 and was cancer free for 4.5 months. A lot of progress depends on the genetics of the tumor, individual internal physical co dictions, and age of the patient on how well your body responds to treatment, but there is always help. You will probably get more responses in this thread that can give you more specific information regarding your options.

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I should have proofread my comment, but I meant a CENTER of excellence for pancreatic cancer. I go to UCLA as I live in Southern California. I also have Mets in the abdominal peritoneum.

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@nancyjane1

Your experience is so different from mine here in Virginia! I had a diagnosis within 24 hours of walking into an ED, and a surgeon in my room drawing Whipple plans all over a whiteboard that day! Surgery was first, then 5FU (12 rounds), then a chemo break before Abraxane/Gemzar (14 rounds), now on break again. C19-9 down to 37 from 496. I have gained some weight, exercise every day, sleep great, and will be ready to see what the oncologist says in about a week. The surgeon weighs in again next month! It was stage 4 with pancreas and 16 lymph nodes positive for cancer. I credit the fast moves that were made for me. I am 76+ and hanging in there for two years now, so keep moving forward!

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Wow that’s great! They really do need to move fast because I’m told PC is very aggressive. Best wishes!

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