The Daneman Family Blog News...things are heating up.

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BY ALLIE DANEMAN
OCTOBER 29, 2009 11:51:49 AM

First I wanted to just update on my overall status being on disability at home. It sucks...I miss work, I'm bored, and even though I really want to help out Jen around the house, I'm lost. I know what I can do but my energy and motivation are not helping at all....but I'm trying ;)

Second on the medical front...things are on hold and hopping at the same time. Luckily I have a relative that knows the right people in the right organization and I'm now looking at getting in a trial at NIH in DC with the godfather of melanoma research. Dr. Rosenberg at the NIH is at the forefront of melanoma research in the country and I've been hand delivered to him to see if I fit in any of his trials. The trial I want to get in on is adoptive cell transfer which they pull out certain lymphosite cells, grow them a lab to get a ton of them, and shoot them back in to kill the cancer. They do this because usually you don't have enough of them which is why your immune system can't kill the cancer. So... you have to have a minimum nodule (tumor) size to even be a minimum qualification which I have...not sure if that's lucky good or bad ;) Anyway, so now I'm working on getting my medical history/details to NIH for initial screening. If I make it past that I go to NIH on a screening visit. If all goes well and I'm accepted into a trial the fun begins. Basically I'll be out in Maryland for awhile to harvest the correct cells, then they grow in a lab and when ready I go out and get a hammering on my immune system to take the cells back. I'll have to do 2-3 weeks of IL2 admitted in their hospital to try and get the cells taken back by my body. The nice think is that if I'm accepted it's no charge...they cover all expenses for me but we'll have to cover Jen to be with me...which we'll figure out if it happens.
    Otherwise I'm just waiting for the trial to start here at SCCA which now will be mid November. Time is ticking...
    I'm still scheduled for throat surgery next week which will hopefully help with my eating issues but realistically until we get my metabolism slowed down I don't think it'll make a huge diff. We think my metabolism is on supercharge which is why I've lost so much weight. The good thing is that it's stopped going down. After a week of eating as much as I can I think I've bottomed it out. It takes awhile to start gaining weight so I have to continue focusing on eating massive calories.
     My right ear is pissing me off and I'm going to see a doc about that tomorrow...it's been bugging me for awhile.

Otherwise things are hunky dory, we met with palliative care today to what they're all about and if that can help us in anyway, we'll see.

Their's nothing like looking forward to getting the crap kicked out of you by meds... Fingers are crossed something will work.