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Just reading the recent emails on frustrations with care, I wanted to chime
in here and add my own thoughts. I, too, am disgusted. I am in my 6th year
of CML treatment and have just about seen it all. I am now without an
oncologist, as mine left the hospital this week. Plus, I just had to pay $996.00
for my pain medicine because someone in my HMO forgot to put the paperwork
through for my 6th month preauthorization for my refills. I am appalled that the
patient is the one who has to keep track of this!! And someone dropped the ball
on the paperwork and now I am out $1,000 of my own money. Talk about
disgusted. Like we all have enough to worry about! Being out of a
doctor, a thousand dollars, and getting over pneumonia is just about to push me
over the edge. I am not in an area that has a great reputation for
cancer treatment. Worcester, MA is , depending on traffic, an hour or so away
from Boston. I like Dana Farber but it is just too inconvenient for me.
So, I guess we all have our problems, right? So, Sue, your daughter
is not alone in being disgusted and feeling like she is being treated
shabbily. I can't understand doctors who don't "feel" for their patients.
I've fired a few in the past few years for various reasons which sound similar
to your daughters. Tell her not to give up trying to get the BEST.
Also, I was told that Tylenol is now acceptable up to around 1600mgs.
per day, but if she has liver problems it is not the best thing to be
taking. I was told that Tylenol was deadly in the beginning of my CML
treatment, but I think only one patient died early on in the trials but he had
liver problems to begin with and he was taking way too much for the bone pain
Gleevec caused. Initially, Novartis put out a warning that it could cause
high risk, but they recanted the warning a few years later, and it is allowable
in small doses.
I know how frustrating it is. The first week I was on Gleevec, I had
internal bleeding and called the hospital. I got the on-call oncologist who told
me to take Tylenol and call him the next day. I was furious, so I know how you
must feel.
If your daughter suffers from severe bone pain as I do, tell her that there
are certainly other pain meds out there that can help without compromising
liver function. However, as in my case, Oxycontin, while safe, is highly
addictive and as you can see by my recent financial problem paying for it
because someone screwed up on the HMO's end, it is very expensive. I
looked it up on a computer website and it said that it costs anywhere between
$1.00 - $2.25 per mg. so if your insurer won't pay for it, then it is not worth
looking into.
I tried Ultracet early on at the onset of my bone pain, but I found out the
"cet" means it has tylenol in it. Tramadol, on the other hand, does not, so
perhaps she could look into that if her pain is not too severe. Hope you
can find something. Pain is not pleasant, and it took me two years to find
the right med for me, with the help of my primary care physician. Still, when he
dropped the ball on the paperwork this month, it cost me. Best of luck and
keep on pushing to find a solution. I had to document daily medical problems for
one month, itemizing each affliction on paper, then sending it in to a board of
doctors with my HMO. I had a hearing (which took me 6 months to
finally get from them) then I went to see a
rheumatologist. He contacted Novartis who issued a statement
confirming this is a bona fide side effect of Gleevec therapy; don't give
up! You must advocate relentlessly and believe me, it took a lot of
perseverance on my part- Sincerely, Lynne Andrews
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- Re: [CML] Disgusted with local care-Sue MoonQn1
- Re: [CML] Disgusted with local care-Sue [EMAIL PROTECTED]
- Re: [CML] Disgusted with local care-Sue S. Folle
