Cheryl-Anne
Since you like to look at things "realistically" then you must realize that when a Dr. tells you that you will be on this drug the rest of your life he is being realistic because at this point in time there is no "cure" for CML. I would rather have a Dr. tell me the truth then to sugar coat things and give me false hope.....that would simply make me angry. I was also told by my Dr. at one point that BMT was pretty much out of the question for me because I didnt have a match and because I was approaching the age when they dont like or want to do them on you and that I should not have to go thru it anyway because of the advances in medication.
Hugs,
Katy
--
xanga.com/katybug45
xanga.com/katybug45
-------------- Original message --------------
From: "Cheryl-Anne" <[EMAIL PROTECTED]>
>
> 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 so mewhere 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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