Dana Farber

posted by Mary Lello, Wednesday, November 25, 2009, 12:00 PM

So many of you are writing and asking how it went at Dana Farber (DF) that I feel I should post a quick write up to fill everyone in. There is still a lot more information to gather but here is what we know so far.

Dr. Wen did not think the tumor looked that different. He did not think the swelling, if that is what it even is, is significant at all. But he wants to see Jim's entire MRI history in order to really make this call. Todd got on the phone before we were even in the car and had called the MRI library in Portland and requested the disc be made so we could pick it up today. He then called our mutual friend Don Harrington who is going to the library and then Fed Ex-ing the disc to Wen today for us (THANK YOU!!!) Wen will have the disc with the entire MRI history on Friday when he's back in the office. I hope to hear from him again on Monday.

Wen did say that the change in Jim's speech may be signs of the tumor changing even if we can't see this on the MRI image. Here's the Catch-22 of all this, if Jim's tumor is not worse then he is not eligible for any new drug trials. So the waiting game is to wait and see if the tumor gets worse or another one starts to grow and THEN we can try something new.

There is a possible trial available with a drug called XL184. This is another VEGF inhibitor type drug but with more of a punch. In that whole angiogenis process that brings more cells and blood supply to a tumor VEGF is a big contributor and what cancer seems to enslave. Avastin targets this VEGF and inhibits it. But now I've learned there are THREE factors called MET, RET and VEGF2. With cancerous tumors these 3-stooges seem to be mutations of the normal receptors. All 3 receptors are key to driving a tumors formation and growth. XL 184 targets all three of these receptors and has proven to not only inhibit the growth of a tumor but also to have tumor regression.

This is a phase II trial - which I like - and Dr. Wen said "if it was my wife sitting here in Jim's place this is what I would want her to be doing now". Alrighty then!

Jim needs to be off Avastin for 4 weeks before he can begin taking the pill of XL 184. IF the MRI's show Wen that Jim's tumor may be changing then we will go back to Boston on Tues. and Jim will undergo a series of tests to see if he's a good candidate for the trial. If he passes these tests then he will start the XL drug within 4 weeks and we will need to go to DF every 2 weeks for tests and monthly MRI's.

If he is not a candidate for this new drug then we will go back on Avastin and continue with this regime - possibly adding chemo if needed (grrrr!). Dr. Wen did say that we can always go back to using Avastin but that being on Avastin too long may limit us to being eligible for other drug trials down the road. THUS, if we can get into the trial now the timing would very good for us.

There will be more information coming, obviously! But both Jim and I are feeling DF went very well and we are hoping to get into this trial. I will keep you all posted.

Have a safe and happy Thanksgiving everyone,

Mary