I was talking to a clinical research doctor at Oregon Health Sciences University here in Portland about trials, and he said that OHSU would have regorafenib available August 1st. He recommended that I start with that, and look at Phase 1 trials when that failed. My Kaiser onc's only concern was that...

There is an organization called the National Coalition of Cancer Survivorship that defined the term "cancer survivor" to mean all persons from time of diagnosis of cancer to the end of their life, according to Wikipedia. That doesn't mean you have to. But I think that when you read about t...

In Portland, Oregon

Kaiser Permanente Interstate Campus
Don't have to be a Kaiser member to come
Every Tuesday 10:30am to noon

PM me if you want more info. Susan

Thank you all for your replies. After a week's vacation, I am back at looking for trials. Part of my problem is that Portland Oregon is not close to big population centers (Seattle is 150 miles away) and so anything I find outside of Portland will involve a lot of travel and travel costs. In Portlan...

Hi Rick -- The problem is, I haven't gotten that far! I can't to "hello", let alone, what kind of mets do you have? And, aren't lung mets solid tumors? I hadn't thought of that. Susan

My doctor did offer to do what she could to help once I found a trial, i.e., send along my history, lab work, etc.,but she never offered to go on line and look for one. But maybe if I found two or three, she might make a few phone calls. They tend to return doctor's calls, I've noticed. When I get b...

I have exhausted all chemo options, and my tumors are refractory. I feel pretty good, even bettter now that I am off chemo. I decided to look into trials. While I have found some on NCI, and the people Gaelen recommends (can't remember the name) have given me a good list. What I can't get is any one...

I don't know what happens in other countries, but here in Oregon the "death with dignity act" has been followed with transparency and honesty. There are several steps that have to be followed, and, as Jaynee discribed in her state of Washington, the people involved were well aware of what ...

I got stomach pains when I started Xeloda. I read that we need to careful about getting too much folic acid when on Xeloda. Folic acid is found in enriched wheat products and multivitimins. Cereal for breakfast, sandwich for lunch and pasta for dinner can add up to way too much folic acid. I elimina...

I have been dealing with cancer for 5 years, with various chemos, surgeries, and periods of remission. Last April the ct scan showed 30-40 small lesions in my lungs. I have been on Irinotecan/erbitux, Xeloda/avastin, and Xeloda/erbitux. With each regimen I had progression. I am now out of chemo opti...

My best friend was the only child of a single mother. They were very close, and she took care of her mother for years after she had a stroke. She would say to me I just don't know how I can cope when my mother dies. As a stroke patient, her mother was slowly dying for years, and when she finally pas...

I like the idea of a like button, but no dislike button. Like some of the others, there are many posts where all I can add, "me, too." Ironically, I was moved to post now, just to say me, too! Susan

Hi BB -- Hope you are doing well from your surgery. As for erbitux, a few thoughts. My dermatologist called the rash chemo-induced rosacea. He recommended doxycycline and a lotion called "metro lotion", or metronidazole for the face. Instead of benedryl, I take an antihistamine called ceti...

The sad fact is that either a person is cured of cancer, or they will die of it. The "grey area" is that with the help of chemo, radiation, surgery, etc, there can be periods of remission, and a stage IV can survive many years. I was dx'ed stage IV May of '07. I am incurable, but will (hop...

My lung mets popped up in April '11. My onc put me on irinotecan and erbitux. The August scan showed progresson. Then she switched me to Xeloda and Avastin. The next 3 month scan showed the mets were shrinking, so we continued. The next 3 month scan showed progression, so now I am on Xeloda and erbi...