SISTER & BROTHER SURVIVORS

[Guest guest]

Hey S & B Survivors. . .FYI~~my 2 cents only:

I've been lurking all summer and chatting online and via phone with others

having 3-12 years survivorship and I've been told. . .if I respond; please be

nice. Well, I feel that its time for me to respond. . .

When I was diagnosed Sprycel & Dasatib, & 17 other medications, etc., were

available for research and development. At that time they were known as AMS &

BMS and/or 2nd generation medications.They were for Survivors who became

'intolerant to or failed' Gleevec (my gold) therapy. Sometime between 2004 and

now; Bristol-Myers-Squidd has been able to present it as 1st line therapy with

Gleevec; which had received FDA approval before my diagnosis as a 'maintenance'

medication for CML (my bug). I have B & S Survivors who have taken our gold

since the 1st Clinical Trials. Our Gleevec's doing what it was researched and

developed to do~~maintenance. I personally think that if these 2nd generation

medications are used as 1st line treatment then they should be given to newly

diagnosed patients as their beginning therapeutic medication; in a clinical

trial or study. Rather than BMS~~Bristol-Myers-Squidd or any Doctors (for

statistical purposes) or any Support Groups/Individuals

leading newly diagnosed patients to use these 2nd generation medications as

1st line treatment telling them that they will have fewer side effects, etc., I

personally feel that this isn't in the best interest of the newly diagnosed

patient.

When I was diagnosed 4 years ago, 2 groups were going through disagreement;

now there are many more groups available that the newly diagnosed may rely upon

for support and information. Sometimes too much information may often be worse

than not enough information. One person who may be seen as an authority may be

abusing this authority and leading the newly diagnosed into an area that's not

in the best interest of the patient unknowingly. This happened to me personally

shortly after my diagnosis; only I had the common sense to seek out other

survivors who gave me support and information. In hindsight, now I know that had

I used that individual as my source for information and support; I would no

longer be a Survivor. The information given to me by that particular survivor

would've made that a mistake that would have cost me my life. I am a 'unique'

patient having numerous other Chronic Illnesses; not having the overall general

health to have the 'options' available to me

then that are now available to my newly diagnosed brother & sister survivors.

I 'assume' and there's that word that I hate; that changes were made to the

2nd generation medications to make them become 1st line therapy instead of 'in

case you cannot tolerate or fail Gleevec' here's your option. I also hate seeing

my brother & sister survivors who have lost their response, 'in their search for

a cure' by using them and becoming intolerant to our gold; leaving them with

Interferon & Hydrea & BMTs as their options (which were made virtually obsolete

after FDA approval of Gleevec. I realize that BMS wants a share of the Novartis

market on Gleevec; but at the risk of me losing 1~~ one brother or sister

survivor prematurely who could otherwise be 'CML Alive & Kicking' on Gleevec.

The statistics are in on our gold.

I don't want to lost a brother or sister survivor because the stats aren't in

on the 2nd generation medications. THANX Pioneers~~Dorothy, Zavie, etc., you

know who you are. . . where are the Pioneers for the 2nd generation medications?

? ?

This is FYI~~my 2 cents only . . . as always, I have ALL in my prayers. . . " K "

" K "

" I AIN'T FINISHED YET " !!!