Monday, March 30, 2009

Just the facts, ma'am

posted by Mary Lello, Monday, March 30, 2009, 8:58 PM

As Dragnet use to say "Just the facts, ma'am".

Here they are:

We didn't get great news but we didn't get bad news either. Basically the tumor on the brain stem MAY have grown a little bit but Dr. Weisburg says that could be attributed to swelling that is still happening from all the radiation only 4 weeks ago, so she's not all that concerned.

She wants Jim to begin his round of chemo again this week - not a different plan, one that we knew would be in the long term care with "maintenance chemo" happening for 5 days 1x/month. And she wants another MRI in 4 weeks to see what this tumor is actually doing.

The 'wonder' drug Avastin IS in Jim's future but there is this protocol we seem to need to go through with this next round of chemo, another MRI and then another round of chemo around the MRI time, in 4 weeks. Not sure, and she has not fully answered WHY, we can't start Avastin now but she really will not discuss this with me ... the "protocol is ..." and that is where we are at right now.

So, we are not sure what to make of all this. I was disappointed as I wanted to hear the tumor was greatly reduced. Jim is disappointed as it means our vacation plans to Moab, UT need to be canceled and any vacation needs to be put out ahead to some distant point right now. Still, Weisburg didn't seem alarmed and said all this is how some folks respond to the radiation. Just means we need to be a bit more vigilant and thus we start chemo now and get another MRI soon.

We will also go back down to Dana Farber this month to stay active in that system and let them know where we are so if any trials come up we will be the first in line. But we feel far more equipped to go down there this time. That first time I was in still in shock, Jim still had surgery stitches in his head and we were complete neophytes with all this. We are more educated this time around!

Sure I wish the tumor was gone and I said this to Reg tonight and he reminded me of a man he met at a brain cancer conference in Florida (yes, there are enough folks with this disease to create entire conferences around! Freaky) who had an 'in-operable brain stem tumor' who is now tumor free. It IS possible to beat these things back! There ARE drugs out there now that can do this and JIm and I are now eating a diet for 'anti-cancer' from all the information I've gotten from this book - astounding information and one we should ALL be reading!! - so Jim and I are still very hopeful and not beaten .... to much ... maybe a little tonight but we will spring back and be in fighting form again tomorrow!

So this is the information we've gotten. I wish I could say more but we really don't know much more.

Big day today, emotional and hard in some ways so I am now off to bed!!!

Loved the pictures of Friday night! Thanks for posting!


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