I'm Sorry, If I was miss understood. I'm not fearing sudden death but it is something we got to face with taking spryle. That's a fact. I was addressing the topic at the beging of the thread about switching from gleevec to sprycle. It's like bam all in your face what you can't take with this. It is scary. I agree with them. But we being sprycle takers know what to look for as really bad side effects. As difficulty in breathing or weird heart beats. If anyone is experiencing these. They should go to the E.R. or at least call your Dr. better safe then sorry.
10 yrs undetectable . Reduced gleevec . Sprycel recommended due to side effects of gleevec. Hesitant/anxious/ unsure of what to do or to expect.
Started by
markandelly
, Oct 05 2015 08:56 PM
Trey are you there lost track
23 replies to this topic
#22
SUE
-
- Members
-
- 109 posts
Advanced Member
- LocationChicago
Posted 24 October 2015 - 10:05 AM
Instead of worrying about POSSIBLE troubles, could you take stock of how you actually feel right now, and in the weeks ahead? Worry wears a rut in your brain - each worry sort of digging it deeper. Whereas, considering good possibilities or checking in with reality and noticing good feelings - that's like filling up the hole again, allowing your brain to move on. I have found that when I'm hyper alert for some symptom and I begin to fixate on fear of it, it almost magically starts to appear! Now that I'm on to my own tricks, I can reverse it.
Kat73,
Excellent advice, and so important to keep in mind. I tend to forget it periodically. Thanks for the reminder!
Sue
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
#23
kat73
-
- Members
-
- 884 posts
Advanced Member
- LocationWashington, DC area
Posted 25 October 2015 - 04:17 PM
SUE - I tend to forget it periodically, too!
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.
#24
SUE
-
- Members
-
- 109 posts
Advanced Member
- LocationChicago
Posted 30 October 2015 - 06:19 PM
kat73,
We all need those reminders. Let's keep them coming. It's one of the great things about this board.
Sue
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users
