December 11, 2008 at 8:21 pm #23187lainyMember
Gosh, we feel so bad. I was reading your post to Teddy and he said, “I thought I had it bad”! I know this is going to sound real stupid but it wouldn’t be my first time, I am not a doctor. BUT, could all the treatments they have put him through have any effect at all on the pancreas not healing? When T had his Whipple the doctor said (actually 4 different onc) they would not do chemo on him as it probably would not work in the bile ducts. We are very glad we did not do that walk although there are people that have. In fact we have decided no chemo. Radiation and cyber knife yes. In any case welcome to the family! Keep us posted.December 11, 2008 at 7:49 pm #23186elainewParticipant
Lainy and Marion – Thanks for your replies. We just had our onc. consult here at Duke and are going with 5Fu and oxal. Gary will get a 2 hr. drip then the 46 hr. pump – then be off for 2 weeks. I guess I was mistaken about the Xeloda in combination with this. Talk about information overload. Lainy, the answer as to why Gary has had chemo already and so much is because it was decided to take an agressive approach after surgery. He started getting radiation and Xeloda but had to stop after 2 weeks because of infections and hospitalization from his drain. Just recently his CA-19 went from 29 to 49, so chemo was restarted (Gemzar). Due to low platelet and/or white blood cell counts and then another emergency trip to Duke for drain malfunction, Gary was never able to complete a cycle (2 weeks in a row). So he ended up having 4 oddball treatments…and that brings us to this week with the CT results and CA-19 to 98. Gary’s pancreatic leak has been a constant source of problems – interferring with everything they try to do for him. Our surgeon (Dr. Doug Tyler) tells us Gary is his first patient whose pancreas hasn’t healed on its own. Our Luck!!! To everyone -Thanks for all your help all these months. Eventhough we haven’t been contributing to the forums, I have been faithfully reading and learning. It feels good to be a part of the family!!December 11, 2008 at 7:12 pm #23185marionsModerator
Hello Gary’s wife Elaine. ….(FOLFOX -FOL)December 11, 2008 at 5:55 pm #23184lainyMember
Hi Elaine, I am Elaine. I have to say your Gary has gone through a lot that my Teddy has gone through. T had a Whipple over 3 years ago and also ended up on nothing but an IV for a month to close a tiny hole that opened at his resection. His CC was in the bile duct valve and totally contained! Then last April it resurfaced where his duodenum used to be. He had 5 weeks of radiation over the summer and starts cyber knife the 16th for 5 days. Sounds crazy to say we are excited but the radiologist feels he will be cancer free again come January! What I don’t understand about Gary is why has he been on so much chemo if there was no spread until the new spot now? (You can look up our posts under Lainy) Yes, this disease is a monster nightmare. All we know for sure is that we know nothing! It sure keeps one on his toes! Please feel free to e mail me if you like. When we hear not so good news it takes a day or 2 and then we reconoiter and begin the fight again! Keep us all posted.December 11, 2008 at 5:12 pm #1600elainewParticipant
My name is Elaine and I am GaryW’s wife. I do most of the reading here and have learned so much since Gary’s Whipple one year ago today. Gary’s CC was confined to the wall of the bile duct and was removed with clear margins, no lymph involvement and CA-19 of 16 after surgery. Complications from the surgery have been unrelenting – abcesses, drains, second surgery due to infection, wound vac, pancreatic leak (the real villian!), 6 weeks of no food/liquid, 3 month course of heavy duty antibiotics through PICC, interrruption of radiation and Xeloda due to an abcess, countless 4 hour trips to Duke (we live in Myrtle Beach,SC). Currently Gary still has a drain for the pan leak and tremendous hernias – the plan was to complete a course of Gemzar because CA-19 went to 49 (clear CT scan)and then to have surgery to repair the leak and hernias. However his CA-19 has now gone to 98, so our oncologist said the Gemzar isn’t working. She consults with the oncologist at Duke and they have recommended a cocktail of Xeloda and Folfox – that was on Tuesday. A blockage of his drain sent us once again to Duke (on Tuesday) where a CT scan is showing a spot on his liver. It is in a “difficult” spot and they’re unsure if they can do a biopsy through his mouth. Obviously yesterday was a horrible day for us hearing this news, and right now we’re waiting for more info from our surgeon and onc. For the first time yesterday we were given very grim statistics after a year of total optimism. Thankfully this forum has made me see the whole picture with more realism, but Gary was taken by surprise. Does anyone know anything about having Xeloda with Folfox? I have done a little research on how it is administered and the side effects but am surviving on “overload” status right now and have to take a break. You’re right – this is a monster that just won’t quit!
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