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In a message dated 12/6/2004 11:21:51 P.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:
I am now trying to get my medical Pat, I read your post and started to cry. I feel just like you do,
especially the part where we don't socialize anymore and feel like just sitting
around doing nothing, but it is making us more sad.
I do want to tell you that 2 years ago I went out to OHSU, with the help of
the LLS and the American Cancer Society. Please call your chapter of the
Leukemia Society and ask about travel/lodging reimbursement. The ACS
paid for my hotel 100% and Dr. Druker's assistant helped me with that. You
can call OHSU and ask about getting help to stay in a hotel. Zavie Miller
was the person who helped me get all the names and numbers. Then, I called
my local LLS chapter and was given the names of airlines that give discounted
rates for cancer patients, and was also reimbursed for most of my flight.
Then, (this was the hardest part) I battled with my insurance company for one
year and got them to pay for everything else. The trip really ended up
costing me nada.
So, as far as your getting the best treatment/assessment - go for it.
Dr. Mauro/Druker at OHSU are wonderful and their staff treats everyone with
utmost respect and care. It is like no other place that I have
visited. I hope some of this helps?
THanks so much for writing......I feel just as you do. I had the mutations
too, and I was just recently told that they were back and I am fighting
again. I can attest to the fact that a few hundred mgs. of Gleevec does
indeed make a difference. I was on 600mgs. for a while and now am on
400mgs. I just took a 3 day vacation from the drug and felt
wonderful. I took it last night and I cannot tell you how awful I feel
today, but as you say, I am here today. Cannot complain about THAT.
I am looking for a place to go for the holidays also, somewhere I can get
out and walk, perhaps a beach, or somewhere SOUTH; I have financial restrictions
also but I am determined to find someplace to go so I can get out of this cold
place and try to walk without falling down, and try to relax and NOT think about
my CML morning/noon and night. It sounds as if you need a break
also. Do something good for yourself.
Keep in touch privately if you want, also. I always welcome another
sister in the CML community. Love, Lynne A.
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