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

Fri, 08 Sep 2006 06:41:04 -0700

Wow,
 
We certainly have gotten some discussion on this topic, even if it has gotten off track a little..lol.
Cheryl-Anne, thanks for your reply. I could tell your not really anti drug, it seems you just want people to realize they do have other choices besides staying on meds. I just did not want to even take the chance that a BMT would not work, and at the time(and I still feel ths way) the chance of not surviving one is just to great. The way my doctors put it to me was that as long as the Gleevec is working it buys time for other drugs or a cure to come out. To their credit there are now meds for those to take if and when their CML becomes Gleevec resistant. Who knows, as has been mentioned a real cure could come down the pike. Until then I will just do what I can to survive. I work out as much as I can, and do what I can to maintain my health.
 Unfortunately, from the information it seems either choice we would make would mean taking meds. What Rob pointed out is a sad fact...CML at this stage is like many other chronic diseases were those that suffer from it have to take meds to maintain their lives.
As far as the industry goes, trust me I understand those in the healthcare industry get tired and burned out, in my profession I was not on anyone of our merchants Christmas list, so I did have days when I would get burnt out..hehe. I do understand executives do work hard, but let me give you a quick example of why I am a bit resentful. While I was still an investigator, the CEO at the time decided he was going to resign, and they paid him $3,000,000 in severance!! To me that is just crazy. I alone saved the company(and this was documented) over $500,000 in possible losses in one year alone. Did I see a dime as far as some sort of bonus?? Hell no. The only thing they did was to give out "awards", and pretty much let me do whatever I wanted during the course of the work day. Let me tell you there were several executives both male and female that resented me because of my appearance.(I have very long jet black hair) Because I did not fit the corp image. The only thing that kept the wolves at bay, was the fact I was good at my job and they could not touch me. Yeah it sucks going from 60k down to 20k(that is what I get in disability) but it could be allot worse, and I know others have it worse than I do.
We all know overall that the world in general is corrupt and greedy, and that is something even those without CML or other diseases have to deal with, it just sucks we feel it a bit more due to the fact we are exposed to it more because of our illnesses. I mean Dr. Montez wanted to run all sorts of test for nerve damage because of my existing muscle and bone pain, when in fact we know it is a side effect, and he even knew it a few months earlier during my previous visit with him. In my opinion he was wanting to run up the tab because I have been lucky enough to keep my health insurance from my former job. I could be wrong about that but it just seemed funny how his opinion changed in a matter of a few months. Not to mention those side effects are clearly stated on the website. I refused the test, and basically told him to shove them. I have an appointment with another doc here in Cincy, and if I like him I am going to switch so I do not have to drive two hours to Louisville Ky to see my current group of doctors.
The great thing here is we can all exchange opinions and facts, and support each other. I really feel comfortable posting here and the fact even if I am in one of my depressed "screw it all" moods you guys are there. We are all not always going to agree with each other but that is the beauty of it, we can voice facts and our opinions.
Katy, your post nearly always make me smile even when I have not been involved with that particular discussion, I love how upbeat you are.
To everyone else, even though we do not know each other, we all share one common thing. We either have CML, or have a loved one with it. So the bottom line is we are ALL in this together, even if we disagree that will not change. So everyone hang in there, and let's keep this group as lively as possible.(no pun intended..hehe) Sorry like I said I have a very dark sense of humor so if I ever post something that offends or upsets anyone I apologize ahead of time. I just feel sometimes it is better to laugh than to cry, and even before CML I was a bit twisted..rotfl.
 
Hang in there folks,
 
Terry

 
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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