well, went to the oncologist yesterday.....when I get my scanner hooked
up (we are in the middle of moving) I will scan Terry's bloodwork
results. The Fish test wasn't good...out of 200 cells, 101 showed
bad. He is on 600mg of Gleevec right now
Terry will do the 1 year (can it really be a year since he was
diagnosed????) bone marrow biopsy on Nov 17 AFTER we finish moving....then
they are going to do another big blood workup, but I don't really understand
why they are doing it, other than it will be about 10 weeks at that
point since he went from 400 back to 600 mg on the Gleevec.
I can't begin to share with you all how bummed we really are.
Moving is a real PAIN with a hubby who is limited both physically, mentally,
and spiritually right now. We weren't surprised with his blood test
results, just frustrated that we can't get Terry stabile. His white cell
counts were in the 3's, so not too worried yet, but with moving, he is so
exhausted.....on Sat night, I thought he was going to start crying he was so
tired after such a full day of packing & hard work.
yes, for those who don't know, we would love a 2nd opinion, but MD
Anderson would not accept my dh as a patient...we do not have insurance &
unable to begin to pay the medical bills that are in excess of $100,000 now,
so we are grateful that he is able to receive any care at all, much less the
Gleevec when we can get it from Novartis
I would love to have an offlist discussion with those who are not insured
and try to help each other obtain passable medical care. Even if
Terry had been insured, we would never have been able to pay the 20% or
co-pays even, so I don't know it makes that much difference other than the
medical folks would get some money for their troubles.
The FISH test alone is over $500 & we owe a company called Dianon
Systems and also Quest Labs thousands of dollars each. Each has turned
us over to numerous collection agencies, etc.....our concern is if they will
no longer process Terry's lab results at some point, etc. I am curious
about other's experiences.
also, has anyone had the ability to obtain medical insurance?
We did speak with a high risk pool with the state of Texas, but they
said it would be over $300 plus just for Terry, AND that they would NOT
cover anything to do with the leukemia.
with all that has happened, Terry hopes to struggle with trying to work a
full day in order to earn more money.....much less insurance
oh, his Gleevec "eyes" have gotten so bad that his eyes are weeping &
goopy. Doc prescribed an antibiotic ointment for the redness at the
corners of his eyes that have sores. Our Doc wanted me to ask you
all what are the best suggested treatments, anything we can do over the
counter, etc. Otherwise, he is referring him on to an eye doctor.
Lora
