5 replies to this topic

[cometbro]

I'm wondering if a cure is ever found, and we stop taking TKIs, will the years of taking TKIs have taken a toll on our bodies?  I know the TKIs are inhibiting Tyrose Kinases, but if we stop taking it after a few years, will our bodies produce these Kinases back at the "normal" level and will our bodies recuperate?

[valiantchong]

There are side effects like some have heart issue, liver issue, blood glucose level went up, red eye, bone pain, mucles cramps, skin and hair discolor, fatigue, stomach pain, digestion issue, blur vission, brain fog, depression and etcs.. I am woried too. What I would like to know how TKI toxicity accumulate and affecting us.

However we also need to be happy this drug is buying time and keeping us goin with a small side effect for more than 60% of patients for more than 5 yrs base on IRIS studies, some patients will stop taking due to some reasons....Consider this a great improvement compare to interferon days before TKIs, where only over 20% of people will survive.

However some has TKI more than 12 years is still working ok... it is affect differently on different people. I was always wonder if one of the enzyme is inhibit what else in our system could go wrong if accumulated in long run... any studies... ?  

[threedprof]

I often wonder the same thing. Lately my body has been telling me to get off gleevec. Curious to see what happens if I don't comply.

[CallMeLucky]

Its the devil you know vs. the devil you don't know.  I know the long term effects of untreated CML (actually they're not that long term).  Not sure of the effects of long term TKI.  Studies so far show most people have not developed any illnesses from TKI use.  I do wonder about it sometimes, but I mostly struggle back and forth with the here and now issues like fatigue, muscle cramps, etc.  I try not to let myself get too far down the road.  Maybe it is superstitious thinking, but I don't like the idea of thinking "so years from now after they find a cure, will this effect me?".  As soon as I start to think that I think "who says there is going to be a cure, and who says I'm going to be around years down the road?"  Just too many unknowns to spend too much time worrying about it for me.  I think it is a topic we need to be aware of and studies should be done, especially if it turns out one TKI might be worse in the long term than another, that would be a big deal to me today in making treatment decisions.  Right now I've set my sights on 15 yrs.  Would love to be around longer than that and will continue to fight well beyond that, but right now my goal is do whatever I have to, to be around long enough for my kids to reach adulthood and know that I took care of them.  Anything after that is gravy for me and if they come to me at 15 years and say we now have a cure, but due to your TKI treament you aren't going to benefit from it, I'll be alright with that.  TKI is giving me the time to do what I need to do, I won't hold a grudge if there is a price to pay down the road.

[Trey]

From what is known now following those who have taken the drug for over 12 years, the effects appear to be tolerable over the longer term, and are likely reversible for most side effects.  This is because the body often finds alternate methods to accomplish tasks when a process is disrupted.  Some young children taking the drugs could potentially have some diminished bone growth and possibly decreased height from what they would have achieved, but that is not entirely clear.

https://docs.google....ltxPeApwNpeOphQ

[cometbro]

I also believe we should be thankful, especially considering the relatively minimal side effects compared to older drugs.  I guess it is pointless worrying too much about it since the benefits are better.  It would be nice though to find some specific combination of food, like grapefruit and something else, to take every day instead of the medication and hope for less side effects.  One can only dream.