It was just a year ago at this time that we learned of Andrews diagnosis and were in the midst of the worst nightmare possible. At the time it felt impossible to put one foot in front of the other, but we have learned that with lots of prayer, love and amazing people we have been able to survive. And not just survive, but experience tremendous joy and a new depth of love and faith. I want to thank everyone who gave us a tremendous amount of support in 2009. It has been remarkable and we could not have done it with out you. We look forward to continued positive results for Andrew.
Cheers to a new year, a fresh start and a lot of living life to the fullest.
5 comments:
I'm a little late, but Happy New Year to all of you!
Hi Andrew,
I've been following your blog for quite some time now...
My name is Benjamin, I'm 32 and live in Las Vegas. I presented with the disease around the same time that you did and hit my 1yr. anni. on 12-15-09.
I wondered if you knew about the DSRCT group in Yahoo. Postings have been pretty slow lately but there is a lot of information in the fourms from previous postings...
Here is a posting that I recently made:
I'm just beyond 1 yr from initial diagnosis... i'm been doing the VACMIE
protocol every 1 month now. Early on I was doing it every 2 1/2, 3 week in
hopes of disease removal. I met with docs at Sloan Kettering after I had
exploratory surgery in June-July and they said that I could go to a 3 - 4 week
timeframe on the chemo protocol.
I haven't really had much nausea and I have had no vomiting through all that
treatment. My latest scan on 1-5-2010 showed no new tumors and many of the
small tumors in the mesentary show necrosis and/or calcification now since the
September scan which is interesting. Also my organs are still showing clear
from disease.
The chemo is taking a toll on my bone marrow.. 5 weeks after my last checmo my
WBC only made it to 2,900 (5,000 - 10,000 normal) and my neutrafil/seg % was 65,
which that part it good... when you have a neutropenic fever they require no
temp for 24 hours and an ANC of +1000 for release from hospital and I'm running
@ 1885.
So, this round of chemo I'm taking a break from the Red Devil Chemo and I'm
getting 2/3 drugs instead to let my body get caught up.
Another thing is that I haven't really had any pain, just some sensations like
several days after chemo. It's almost like I can feel the chemo working?
Well, I hope this continues because my quality of life is pretty good despite
all this. I'm soon going to hit my lifetime limit of the Red Devil Chemo and
then it's going to be another drug either oral or IV outpatient for 2nd line
treatment.
My doctor and I have been calling the folks that run the trial for IGF-1R and
they have been very bad at getting back to us...... they have NOT returned
phone calls. My doctor got in contact with a DR friend that works this trial
in NJ and he said that DSRCT patients did not show anything promising during
Phase I, so they were not going to proceed with Phase II. That's good to know
because I was thinking about doing that trial in Santa Monica, CA.
It brings up the question about doing trials. If your doing something that is
working, it makes sense to continue that treatment and then keep a trial lined
up to keep in your back pocket in case things stop working.
Happy New Year everyone... Thanks for all the info and comments that everyone
posts.
If you want to reach me for any reason you can contact me via paniki702@yahoo.com
It's beneficial to all of us to share treatment plan info and the lastest info on trials etc..
Take care,
Benjamin
Pants on the ground, Pants on the ground, all these fools with their pants on the ground.
Give me a ring next time you make it to the Lou. Otherwise, pick your pants off the ground, pants off the ground.
Wow, great informative news from Benjamin above. We'll be praying for him too.
Andrew, Happy New Year and our best wishes for a great 2010, wow, 2010?!
Was great to see you at church today even thought we didn't get to talk. : )
VACIME is the protocol I'm on.. Mispelled in original post
Benjamin
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