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How long will it take CML to return

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Hi Everyone


I am new to this support group, and want to thank you for all the great information and advice you have been able to provide. It really helped explain what to expect as this treatment moved along.
I was diagnosed with CML on 16 Dec 2016. (not the best Christmas gift but hey) After the blood tests came back I was told I was in the accelerated phase and was started on Hydroxyurea for a month and then started on Sprycel. Things went pretty well and aside from a few annoying side effects life returned pretty much too normal. After about 6 month I started being short of breath, they checked for all the normal Sprycel related issues and they came back clear. In September I again went in to be checked for shortness of breath and the x-ray came back with some small issues but not related to the CML/Sprycel and recommended a follow up x-ray to ensure no issues in 3 months. The shortness of breath continued and at the end of October was told to stop taking Sprycel and I am currently going through testing to see if I have developed pulmonary hypertension. While I am a little concerned about this I have not been hospitalized and I can still do most things I normally do just a little slower to keep myself from getting out of breath. What I am concerned about is how long it will take for the CML to come back as I am not taking any TKI’s. I had just reached not detected on my last PRC test so that was really good but I had just reached that point and had to stop taking Sprycel. Is there any good info on how fast the CML will return? All I ever find it info on stopping and treatment free trials… I have not reached the milestones for that type of response (min 2-3 years in with deep response from the TKIs normally be required) so I am assuming the CML will return just not sure how long that would take.


Thanks for any info and sorry for the long post

Jarrod

Hi Jarrod,

Are you not taking TKIs while you are being tested for Pulmonary Hypertension? If so, I guess your break from TKIs will only be short. If so, there's nothing to worry about. CML is of course serious, but it's not lightning quick. 

When did you stop taking TKIs, and when did your doctors suggest you might start again?

David.

Hi David

No they took me off of Sprycel on the 30th of October and I don't see the Hematologist until the 28th of November. They said when I came back in that they would likley start me on a new TKI, and mentioned Ponatinib, but I kind of thought that one was for when you were resistant to other TKI's or in you had a mutation. I guess I will find out in just under a week.

 

Thanks for the reply

hope all is well

 

Jarrod

Hi Jarrod,

Ponatinib is used with a particular mutation called T315i - the other TKIs can't deal with this mutation properly. 

The other use for ponatinib is as you suppose - when the others aren't working as well as hoped. It's generally used as third line treatment rather than first or second, in this case. 

David