10 replies to this topic

[GerryL]

http://bloodjournal....0.full.pdf html 

[lisalisa]

Gerry, I LOVE this. The idea of going of medication is scary, but imagine!!!!

[Susan61]

Hi Gerry:  We have all talked about this, and cutting back doses.   I want my Oncologist to read this article.

[GerryL]

Hi Lisa,

They are talking about maybe only 5% of patients can successfully come off their drug. Possibly due to the low number of people on Gleevec being able to achieve PCRU.

The interesting thing in this article for me was that they are questioning whether the use of second generation TKIs were any better than Gleevec.in regard to eventually stopping.

[GerryL]

Hi Susan,

Let us know how you go with your doctor.

You would be a good candidate to try coming off Gleevec.

This article reminds people that the ability to stop the TKI is low, but it also doesn't indicate that there are any issues if when trying to stop, that the CML returns. Restarting your TKI would bring it back under control. You would need to switch to monthly testing for the first six months if you do want to have a go at coming off.

[lisalisa]

I was surprised at that number... I had heard that it was higher. I do like that these trials are happening - I feel like it offers a lot of hope that perhaps some of us can expect not to have to take these meds for the rest of our lives.

Your comment about the second generation TKIs is a good one ... I often hear that Tasigna may be overtaking Gleevec in terms of the best outcome.

[Susan61]

Hi Gerry:  I said I would talk to her, but I am really curious as to what she thinks being what her attitude has been toward me even cutting back.  Right now I am going to see the Orthopedic Doctor this coming week, as I cannot take the knee pain any longer.  Cannot even walk without holding onto something.

The biggest thing you said was about restarting my TKI and coming back under control, that was my other concern.

Susan

[GerryL]

Hi Susan,

A friend of mine had a go at coming off Gleevec, she had been negative for at least two years, the CML came back somewhere between 3 months and six months of stopping (her doc was only testing her every three months). She restarted her Gleevec and is now back to negative. She is also on 200mg Gleevec.

Stopping for your operation shouldn't be an issue.

[GerryL]

Hi Lisa,

I think the low number is that when the twister results talk about that for 40% of PCRU patients, the CML hasn't returned, you still need to remember that some of the stats show that only about 15% of people reach PCRU on Gleevec. 

[Tedsey]

It makes me curious as to what the real reason is that some people respond to imatinib so well and why others do not (and what role interferon really plays as a precursor to imatinib).  It appears using interferon before imatinib cannot be well supported because the control group must have been so small, (i.e. survivors who lived long enough to take imatinib, or I think, Dr. Talpez' study using Interferon in conjunction).  Sadly, it seems there are still no predictors in place that could determine who or who could not stop TKIs (except hearing from the brave souls who try stopping).  The only thing that continues to be a constant is that it looks like one can stop a TKI for a short while, then start again and reach the same deep response upon restarting (phew!).  Although the article did not mention this, it appears a reduction in dose could also keep the disease well under control.  But that is still uncharted territory and it appears few hem/oncs feel confident to come aboard. 

For those who must take the drugs for life, I always wonder how long they will work?  Of course, I hope for all of us to outlive their efficacy.  Anyway, I am so happy to hear some of us may successfully come off the drugs and be cured.  I am grateful for this research, (STIM, TWISTER, and Gerry's and others personal trials).  Sadly, it still feels as if we are groping blindly (well, "I" am not a researcher, and thus, not part of "we", but I try to read as much as I can).  Nevertheless, what works works!  May time afford all of us to find out why.

Gerry, best of luck to you!  I hope you will be in the small percentage that is cured!  But check in with us from time to time!  As for me, I did not respond well to Gleevec (or so it seemed, my diagnosis and first treatment was a circus---in retrospect it appeared I may have responded well, but couldn't take the side-effects).  I am OK with taking Sprycel indefinitely.  I feel well on it.  Just hope it is harmless to the rest of my body!  Wouldn't that be great?  That is, the TKIs not interfering with any major bodily function long-term (or simple solutions for anything that arises)! 

Thank you for posting this article.  It directs more light into the dark conundrum of CML.     

Teds

[GerryL]

Thanks for the wishes Tedsey.

I meet what the current thoughts are for stopping, so we'll see. I see my doc in a couple of weeks, though I'm still waiting on my final results to come in. Will probably stop the drug on the morning I see him, if still PCRU. I'll add my results from testing to the forum - good or bad. If the CML returns, I might restart on 400mg to knock it down and then have a go at being on 200mg to maintain. As much as I appreciate Gleevec and the other TKIs in keeping me alive, I'm like you and worry a bit about the effects of the TKIs long term.

It would be wonderful if they could determine the correct markers for someone to stop, but I guess one of their issues is that the testing process can't get down to a low enough level to know whether negative is exactly that. 

One good thing is that they are continuing to try to find a cure for all of us - there's an interesting article posted here Interesting Potential New Novel Approach. Plus they are now starting trials for people on Tasigna and Sprycel.