Great News Alice!!!

October 27, 2009 at 11:39 pm

Hiya Alice,
I am so glad you’ve been having no side-effects.
I got my chemo on 20OCT, and have eaten to date, only 2 meals of
baked potatoes…that’s 6 days and only 2 meals–it’s all I can
stomach. But I’ve been on the Cytoxan for 2 1/2 years, and they
think it will eventually wipe out my bone marrow, as it kinda wipes
me out now, every time I get it.

I watch for your posts every day. I am so happy for you.
Yes, a little jealous, as a couple years back, they told me
I would definitely be accepted into the program, but then
learned I had to pay for the whole thing out of my pocket, as
it is not government-financed, and the insurance companies
won’t cover experimental procedures–all that you went through,
and found out for yourself. You are lucky to have caring
parents that have paid out of their pockets, for your procedure.

Now, we have to get Dr. Burt to do his write-ups of this,
as I see his program ends March 2010. He’s got to push it
to the Neuro Society, and get this out of the experimental
stage, and get it listed as a “normal protocol of treatment”.
How many of us would be fortunate enough to pay for this
out of our pockets? Not many at all. His program has been
recruiting for a few years–and you told me you were only
the 11th person through it. And out of ten people, with
only 2 people it didn’t work–I call that good odds, especially
when you are at the end of the rope with nothing else to try.

I hope the rest of the stem cell procedure goes well,
and you continue with little side effects.
Oh, how I wish you with a COMPLETE remission of this
damn CIDP, and you’re back on the streets as a policewoman.

All the best,

Great news, Alice!

March 19, 2009 at 2:52 pm

I wish you much luck with this.
As I have posted on this subject in the past, I find it incredible that all costs wouldn’t be covered by the doctors/researchers working on this, in the name of research.
If we, (us CIDP/GBS people here), had a well known disease such as MS, MD, etc., I’m sure costs involved with research with stem cell and CIDP would be covered.
But, because we have a rare disease, the costs are on our backs.
Let me know how it goes, Alice. Both with the actual procedure, as well as the insurance coverage/financial coverage.
I’ve had long talks with my neuro, and he has said he is not satisfied with the results yet of the the stem cell/CIDP research. He said if he was satisfied, then he would join in their research, and open it up to his hospital since he is head of neurology.
All the best,