Hi Lora,

I'm sorry your husband is having such problems.

We have insurance through group health at work.  I was told they 
cannot deny coverage (for pre-existing conditions) in groups, but 
that may be because I was under another group health plan when I was 
diagnosed - IE no lapse in coverage.  

I'm sorry for my ignorance also, but what is the Fish test?  The only 
test for CML I have is the PCR test.  And that is only about once or 
twice a year.  All others are the CBC's.

As for the bone marrow biopsy, I have only had one in the past 4 
years, at that was just this year.  My previous doctor said the 
biopsy was nowhere near as sensitive as the PCR test (he was involved 
with the clinical trials), and that the biopsy was only needed to see 
if there were any mutations.  I had it this year because my PCR test 
showed an increase in the Philadelphia Chromosome.  And the biopsy 
was horribly expensive!

At one point, I had extreme tiredness, but my doctor decided to check 
my thyroid and found I needed synthroid.  I was also low iron. Has 
your husband had his thyroid checked?

I hope things get better for you, and will keep you both in my 
prayers,
Kathy

--- In [email protected], [EMAIL PROTECTED] wrote:
>
> 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
>






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