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things are going pretty poorly for us....but I promise, it is not
as bad as it seems. Terry is not taking the Gleevec at this time, he
was unable to function "period" & our finances were just not able to handle
a "stop" in income. The good part is that if & when we get to MD
Anderson & on a clinical trial, most do not want him on it a prior 30 days
before starting the trial. We hope to revisit the Gleevec by the end
of March or no later than June 1st, when Terry has a lighter work
schedule. OH!! We also qualified for one year's financial aid
for the drug, so that was a huge relief.
We are currently dealing with the Hydrea at 4 pills a day, which
leaves him extremely dizzy as he changes positions such as sitting to standing,
etc. Once he adjusts , he can then walk or whatever.
Unfortunately, we are still awaiting financial aid for it, and we had to buy
another week's worth of it. ouch
Next, side effects of the Hydrea....it raises the Uric Acid level
(thank YOU CML list for this tidbit) Terry has suffered
& suffered through minor & very severe kidney stones for the last 10
years. Uric acid stones are not visible on Xrays, so the doctors were
never able to help him or refer him to Dallas to get them
ultrasounded. Anyway, his uric acid levels were rising so high, the
nurse called immediately & had us rush to get him on
Allopurinal. He was taking it, but his levels were so high, they
increased the dosage....it is relatively inexensive, so we can handle the
cost.
Next, 3 weeks ago, he also came down with another sinus
infection.....par for the North Texas area......and we couldn't afford the drugs
for that, so they prescribed Amoxicillin that is inexpensive, but not near as
effective, so he is on a 2nd round of it.
argh...to be the working poor!!! The cancer doc
in Denton is seeing Terry for free for now...and they are covering local lab
work....but the labs they sent such as comprehensive & now for the Uric Acid
are getting out of hand, and now we can't pay them.
We are in such a quandry...in a perfect world, we would like to pay
all the hospital related bills at least $10 each per month....now we don't even
have that....we spent over $300 on meds for January....and that was just the
bare minimum to get by.
we have much to consider, this has been very overwhelming because
we just don't know how to overcome the intense feelings.....the money is just
one of many issues we face. We realize there is much hope in curing
& putting the disease into remission. But, we are still trying
to get his white blood counts down!!
oh!! he left the hospital around 11/20 & his count
was around 86,000........by the time we got to 3 weeks ago, he was back to
154,000 (I am sure the sinus infection helped with it increasing!!)...he was
256,000 at diagnosis...but with increasing the hydrea & being on the
amoxicillin, his count was down to 66,000 this past Wed.
also, could an armchair CML friend give an overview of what all
this means below....I am typing this from his hospital chart.
11/11/04 WBC 256,000....27% blasts......14%
metamyelocytes....1% promyelocytes....hemoglobin 12.8 (this has continued
to be a problem the doc says)....platelets are 531.
we got a book on Adult Lukemia, and while I am intelligent....the
crash course on anatomy & then blood has been difficult....I am not as quick
a study as I once was!!!
we have other unexpected dental things coming up with me first, and
then our children, and though we have dental insurance, it pays so poorly that
we are just going to be out quite a bit....one reason why Terry just needs
to work for a few months.
I appreciate all those that said to just push through the side
effects of Gleevec...and I did greatly encourage my hubby....but it gets to the
point of wondering where I crossed over into nagging!!! Terry had to
decide that sleeping 24 hours & being non functioning was just not for him
right now. Maybe if he can get his cell counts down....or try a
different drug he will have better results.......one moment at a
time!!
Lora
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- [CML] update on Terry from Texas hbcmommag
