That is true, where would we be without R & D and hopefully a Cure! Yep there would be no TKI.
However to be perfectly honest it really bother me to feel like a guinea pig of sorts, on any drugs. If possible I would prefer a drug that has been out at least 10 years. I do think that is what is required for most drugs. I do understand it is imperative that we push these drugs thru as a person may not have a response or because of side effects on 1 drug. However when I first went to my new onc he said most patients are the opposite of me, they just want the newest and latest, or trial drugs, thinking it is better. In fact that is what my previous onc said last year, there are better drugs, I think she used that term rather loosely, as just for the sake of "oh you been on that drug 6 years now, there are better drugs" That didn't sit with me well. It is for that reason only that I note I would not want to change drugs, if I had a choice. The new onc did agree that he would not advocate changing drugs just to be switching. I personally sometimes get that impression, that if we try first line and don't like it because of the side effects or we don't give it a chance for the response we want NOW, because we are scared out of our wits! We think another drug will give us less side effects, better quality of life, and faster response, when that is not always true. The CML expert at the dinner last nite eluded to the fact that many of the doc/onc are really not blood cancers experts, thus are switching drugs around, or the patients are not always taking their meds, because they forget or because of financial reasons, or they just want something they think will be better. Newer, doesn't always mean better, but by all means if it is necessary to change then we should, regardless of the length of data. Taking Cancer drugs and the need is not like some of the lesser disease or where you have more choices.
My son was put on a drug and later it was learned that it causes Diabetes and he now insulin dependant (because of this drug), he was awarded a small settlement, but that was a small price to pay for diabetes. But when you think about it, such is life, regardless of what drug it may be, there are no guarantees.
I appreciate your thoughts and wishing you continued healing on your journey.
Always praying for the CURE!!
Best Wishes, Pam South