June 30, 2009 at 11:58 pm #30073elainewParticipant
Gary and his brother and I have been scouring the internet and making phone calls since finding out he has a tumor in his liver. Our most substantial lead has been to send his records to Dr. Kennedy at Wake to evaluate him for SIRT. There are also ongoing calls to Blue Cross Blue Shield – naturally a sticking point! They claim our coverage only gives an oral approval before any treatment and then may or may not actually pay after the fact. That doesn’t sound right as Gary has had 2 huge surgeries and many expensive drugs and treatments, and there was never a question of coverage. Anyway…we’re still pursuing it, will be getting a case worker but expect they’re going to say we still have other options open to us (chemo and possibly surgery).
We’re also still searching for clinical trials for any of the targeted therapies. Thank you for your responses to our original post. Elaine and GaryJune 27, 2009 at 12:24 am #30072walkMember
you should check this one out. My dad wasn’t a candidate because of his age, but it really sounds promising.June 26, 2009 at 5:55 pm #30071lainyMember
Hi Elaine and we are sorry to hear about the turn in events. Ditto on what Lisa said. Keep your spirits up, your hopes alive and we all know that miracles do happen!June 26, 2009 at 4:58 pm #30070lisaMember
For starters, I think it is important to follow the Anticancer diet. I have been forced to modify my diet to eat more easily digestible foods, and am almost vegitarian in my diet now.
No one knows how quickly this cancer can spread. It might be quick or he may be one of the lucky ones like Kris and I with a lazy tumor. I’ve been stage 4 for a long time now. Stage 4 is not an immediate death sentence. It’s just a way of describing cancer.
I’m glad Gary feels better, and my best wishes for both of you!
LisaJune 26, 2009 at 4:42 pm #2477elainewParticipant
We haven’t posted in quite awhile because things were going smoothly. Gary had surgery in April to fix his pancreatic leak and hernias – resulting from his Whipple in dec. 2007(many, many complications with that). Folfox had been suspended for the recent surgery in order to give him better quality of life (which it did do). His CA-19 was at 41.2 and recently went up to 59. A CT scan and biopsy show the cancer has spread to a 3×2.9 cm mass in his liver. Today’s appt. with the oncologist confirms he’s now at Stage 4, and he’ll be going back on Folfox with Tarceva added as well. She recommended we research clinical trials as she has nothing further to offer him.
I know I have alot of computer time ahead of me but need a day or so to assimilate this new deveopment. I’ll start with doing a search here of liver spread and tarceva – then go to clinicaltrials.gov. I know Gary has questions about the rapidity of spread and how long this can be kept under control. He feels quite good now, digestive problems have been relieved some, still short on energy and can’t gain weight. But he’s eating well, following the Anticancer book diet, acupuncture, massages, meditation, etc.
I’ll be looking for information on embolization, ablation, etc. Just when I thought we had become experts on what we were dealing with, now it feels like we’re starting all over again. The nature of the beast!! Any suggestions would be appreciated. Elaine and Gary
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