[CMLHope] Re: Bone growth delayed in 12 yr. old-Cheryl-Anne

Thu, 07 Sep 2006 16:30:18 -0700

The healthcare industry is as corrupt and greedy as any large business and it is all about making money. However that does not mean that researchers and scientists are off base in saying that drug therapy for a lifetime will be needed for CML. That is the case with diabetes, heart disease, and many other types of diseases. There is no "cure" being withheld from the public to sell more drugs.

Rob

On 9/7/06, Cheryl-Anne <[EMAIL PROTECTED]> wrote:

Terry,

Actually, Interferon has not entirely gone away.  I am not going to
talk to much about what is going on here, suffice it to say, I am in
touch with key researchers and patients and there are some exciting
things happening.  However, Iinterferon (IFN) does get lots of bad
press, unfortunately not enough was known about it and in many cases it
was not well used or tolerated.  Many doctors and patients too (have I
got tales to tell) thought that "more was better", that isn't really
the case.  That same mentality is creeping up again with the high doses
of IM.  Patients in the States have a choice now, and if it were me, I
would just switch over, more is never better!

Don't you find something profoundly wrong with anyone who tells you at
the start of your disease that you are going to be on this drug for the
rest of your life?  Do they know that a cure will never be found?  If
so, how do they know it?  Just because "they" say that, why do you
think you have to believe it and just be as happy as you can be about
that?  These drugs were only meant to be stop gaps - that means to keep
us stable while work continues on for a cure.

Money has to be made on diseases, otherwise why would anyone bother?
If the salary for a specialist like a Hem/Onc or other type of doctor
was only about 50K a year, how many little children do you think would
be telling their parents "gee when I grow up I want to be a doctor".
Would anyone study and work the amount of hours they do for a small
salary?  Then of course there is the ego factor and somewhere on the
list, but never usually high up, is a small dose of altruism.  To be
fair, I am in the health care industry (have been for over 15 years -
ironic I know) executives work as hard and study for as long.  In
short, these people as well as the researchers are all human beings
like you and like me.  What they do is their job, like you did your
job, like I do mine.  They get tired, burned out, and as fed up as all
of us.  All the more reason why we, the patients, need to stay on top
of things.  It isn't a perfect world.

You do not have to "deal" with the side effects of Gleevec, you always
have a choice.  I know, I have made many choices.  Interestingly
enough, when you make the choice (whatever choice you want) then you
usually do better with it.  That is pretty amazing that your doctors
will not even "think" of a BMT because Gleevec is so successful.  In
the end Terry, it isn't their choice - it is yours!  I am not saying
you should have a BMT.  Far from it.  You were saying that you wouldn't
like to go through a BMT only to be told that it didn't work.  But that
is exactly what you are getting - what we are all getting with the
drugs - it isn't a cure, it will never be a cure, and it doesn't even
come close to a cure.  At this point it is probably hard for you to
beleive that I am not anti drugs - but believe it or not I am not anti
anything.  I do prefer to look at things realisticly.  I admire the
doctors, researchers and even some of the industry people.
Specifically, I like to think that we can honor those doctors and
researchers dedicated to this disease by not allowing ourselves to get
used to this disease as a chronic disease.  No - that just won't do.
We all, each and everyone of us needs, to have hope and faith that work
is progressing and that we can look forward to a cure sooner than
later.  Humankind has done a lot of wonderful things, and so many
cancers have been "cured" we have every reason to expect that our form
will be cured too!  It is the responsibility of all of us to stay as
healthy as we can and as active as we can in making sure that we
support and honor the right causes and choices that will help us all
reach a cure sooner than later.

Sorry about your job, I do hope you get to go back to work and earn a
decent wage.  You seem to be much too young to be not out there.

Cheers,
Cheryl-Anne





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