Next steps when chemo response stops

Posted by aj @eceaj, Nov 20 5:56pm

My husband (Stage 4 / whipple / liver mets) has stopped responding to his chemo regimen. Even though his liver mets had dissapeared upon starting Gem / Abrax - they came back in 8 weeks. (at this point we've exhausted both Folfrinox / Irinotecan and Gem/Abrax combos) His oncologist said it was very aggressive and suggested looking into trials. Reading the messages here i am seeing a lot of potential other approaches that help buy time but we weren't suggested anything other than trials. I feel like he just left us in the dark. We live outside of the US - so how would i go about getting an opinion from a center of excellence? Or are there really no options other than trials? If anyone can share opinions or direct me in a way i'd really appreciate it.

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

Where are you located? I have spent many hours looking into trials and might be able to help.

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I live in Turkey/Antalya. I am a stage 4 pancreatic cancer patient. Chemotherapy did not work. I would be grateful if you could provide information about trials. Thank you.

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Profile picture for hakanb @hakanb

I live in Turkey/Antalya. I am a stage 4 pancreatic cancer patient. Chemotherapy did not work. I would be grateful if you could provide information about trials. Thank you.

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@hakanb

I sent you a DM message as i also reside in Turkey.

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Profile picture for keepingoptimistic @keepingoptimistic

Where are you located? I have spent many hours looking into trials and might be able to help.

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@keepingoptimistic

Thank you, we live in Turkey but are willing to travel. The problem is less about locating the trials but more about getting the up to date / proper contact information it seems. clinicaltrials.org is really out of date.

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I spent hours going from place to place. PanCAN is the best place to call. I got a great deal of info from them. Had I done this initially I would have saved an enormous amount of time. As a European the best trials in Europe from what I can tell are in Germany. I don' know the requirement particulars but hopefully I have helped.

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My incredible surgeon is now opening a robotic surgery division in Beirut. He travels between atlanta, ga and Lebanon.
Very knowledgeable, focused on liver and pancreas. He saved my life and championed a few things out of the box for me. He is very engaged in this disease. If you can go there, i highly recommend.
Private message me if you would like his name.

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What is your Surgeon’s name?

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Sorry to hear this. My heart goes out to you and your husband. Have you tried to call Mayo to set an online appointment with an oncologist?

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Profile picture for gamaryanne @gamaryanne

My incredible surgeon is now opening a robotic surgery division in Beirut. He travels between atlanta, ga and Lebanon.
Very knowledgeable, focused on liver and pancreas. He saved my life and championed a few things out of the box for me. He is very engaged in this disease. If you can go there, i highly recommend.
Private message me if you would like his name.

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@gamaryanne yes please would be very interested in speaking with him.

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