I have a lot to share

posted by Mary Lello, Tuesday, January 5, 2010, 5:30 AM

I want to let all of you know how Dana Farber went as so many of you have emailed me or called us to just let us know you were thinking of us yesterday while we were at DF.

We actually got good news. I would even say GREAT news! Jim is NOT a good candidate for the new drug XL184 because after being off avastin for 4 weeks there is no change in the tumor, or such slight change that it's even hard to tell if there is any change at all. Dr. Wen said that some people with Glio's go off avastin for 4 weeks and there will be a huge surge in the tumor since the avastin is only suppressing the tumor. This is NOT the case with Jim - Jim's tumor barely changed.

There is some light coloring around the tumor and Wen isn't clear on what that is - swelling possibly but he's not sure. If Jim's symptoms had changed a lot - gotten much worse - then he would say the tumor WAS acting up and would want him on XL, but Jim's symptoms are only slightly to marginally worse and it could be just fatigue from all the traveling. As always there are more then one variable .... but Wen and his assistants agreed that fatigue would play a huge part in this.

Jim was disappointed. It was a long, hard day, he underwent a battery of tests and then we weren't put into the trial? What the hey? BUT, Wen wants what is best for Jim and this trial would ask a lot of us in terms of time and energy going down to DFI on a biweekly schedule as well as needing to spend a couple days at a time at DFI in the first 6 weeks of the trial. Of course we would do whatever is needed, if indeed this WAS needed - but it appears it isn't.

In addition, the new drug has a lot of side effects and you never know how an individual will respond to the drug and those. Jim tolerates Avastin very well with barely ANY problems - Wen can't promise this kind of reaction to the XL184. Avastin is working well for Jim, why introduce a new drug with too many unknowns?

So he feels staying in Portland and on avastin is our best treatment plan for now. If things change or get worse then there is a window open for up to 4 months for the XL184 trial.

I will call Dr. Weisburg today and let her know we are ready for another infusion of avastin this week. Besides, we've missed seeing everyone in that office! If life could change so much that I need never go back to that cancer center in Scarborough I would be happy as a clam - but this IS our life now and those folks in Scarborough are wonderful and we have missed them!

Shall post more about our trip tomorrow but wanted to let everyone know our good news.

Loving you all back,

Mary