Advanced Member
Posted 03 August 2016 - 11:44 AM
http://www.nature.co...=OTgwNDkzNDY2S0
This paper was published in June of 2016 and it provides a very nice overview of TKI discontinuation and related issues. A long read but a good one, especially for those considering quitting their TKI.
I think the good news for all of us is that the field of "medicine" continues to learn more and more about our beloved disease. Enjoy...
Mike
Advanced Member
Posted 03 August 2016 - 05:20 PM
Mike, thanks for this. I've stashed it in my bookmarks in order to refer to it often. So many studies now! I can remember when there were only 3 or 4 going on, total. It's all too much to remember, so this is a big help. So many ideas have changed since I began this 7 years ago, and I know there are plenty of people who can remember back much farther. I get so antsy sometimes - I want this monkey off my back! I used to be so scared and sick that all I focused on was making it to MMR. But now I'm greedy and impatient for a cure. I want to be in that cohort that gets to try cessation. And then I want TFR and then I want a real cure. I wish "they" would HURRY UP!!!!!!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 03 August 2016 - 07:07 PM
This info is interesting and gives hope for some who have failed in their first attempt at stopping.
So far, only one trial was published on patients discontinuing TKI treatment a second time. Sixteen patients in second CMR were treated for at least 1 year with imatinib after a first unsuccessful stop.39 All patients were in MR within a median of 2.5 months (range, 1-8 months) and obtained a second CMR after imatinib reintroduction within a median of 6 months (range: 1-19 months) after this first attempt. Four patients (25%) never lost their MMR and remained free of treatment with a median follow-up of 32 months (range, 15-53 months). Two trials are currently in the planning phase to investigate the concept of a second TKI-stop in patients failing a first cessation attempt, one including nilotinib as therapy before a second stop and the other one dasatinib.
Advanced Member
Posted 04 August 2016 - 07:39 PM
http://www.nature.co...=OTgwNDkzNDY2S0
This paper was published in June of 2016 and it provides a very nice overview of TKI discontinuation and related issues. A long read but a good one, especially for those considering quitting their TKI.
I think the good news for all of us is that the field of "medicine" continues to learn more and more about our beloved disease. Enjoy...
Mike
Certainly encouraging, With the brain fog, it is a better morning read. I'm going to re-read it in the morning. I like the comparison chart.
Advanced Member
Posted 11 August 2016 - 08:29 PM
New Member
Posted 24 September 2016 - 11:41 AM
Thank you Mike for the info.
Sept. 2011 WBC 119,000
Oct. 2011 Confirmed CML,Started Hydroxyurea 1000mg 2x daily
March 2012 Confirmed Ph+ CML, Started Gleevec 300mg daily
Sept. 2013 Gleevec 300mg every other day
March 2014 Tasigna 600mg 2x daily
May 2014 Tasigna 400mg 2x daily
July 2015 to present Tasigna 300mg 2x daily
Advanced Member
Posted 24 September 2016 - 11:56 AM
Update regarding the LAST quit study / clinical trial. Although the government and other related websites show the status of this study to be "open" and "recruiting", as of recently it was closed to new patients.
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