24 replies to this topic

[Pin]

Trey's rec - Sprycel 50 mg is spot on. People freak out way too much about the possibility of a pleural effusion. At a relatively low dosage the possibility isn't that great and a pleural effusion isn't a huge problem. Eventually, hopefully we will get the abl001 drug that will have almost no side effects - that is the future.

 

The specialist said the same thing as well, that a PE isn't a big deal, I feel like it would be for me though, as I rely on my lungs to get me through the sport I play - if that gets worse, I'll be pretty sad

 

I have had short stretches of benign PVC's for over 15 years, but never like I am having now. I believe that the Tasigna has contributed to making them much worse than they have ever been before (irregular heartbeat is possible with all 3 frontline TKI's)

 

I have little heart palpitations a lot already, I assume this is due to low magnesium etc. Hopefully this won't get worse! I've asked if I can start with 450mg, but I think I will end up with 600mg.

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14

• Back to top

[Pin]

On Bosulif, I do not have PE, which I had on Sprycel. Compared to Tasigna, the big benefits are better glucose
control and my hair color returned (no longer white) and the frizziness disappeared.

 

I'm actually not too worried about the glucose control (famous last words no doubt) because Gleevec has me hypoglycemic most of the time, I'm always eating...

[Pin]

Pin, that's good about going back to glivec. It does also make sense now that it's off patent.

 

Wrt switching my doc was always careful to note side effects to build the case to justify intolerance. Mostly the only thing the doctors aren't going to be able to help you much with the side effects so the very least they can do it note them down. These drugs are far too young to be able to say definitively that a symptom can't be a side effect. It's much more likely in a young otherwise healthy person that your symptoms are less common and/or poorly documented side effects.

 

Re fasting. Very occasionally it's annoying but the vast majority of the time it's fine.  My take is that it's healthy not to be able to eat between meals and to be organized about meal times. I do the first dose in the morning (5am) and then ride to work (takes over an hour), then I don't eat from 2hrs before I leave work and take the tablets before I ride home. So basically the riding takes all the fasting time as you wouldn't exercise on a full tummy anyways. My doctor (along with many of the CML experts) is fine with anything between 10-14 hours between doses which gives all the flexibility I need. Sometimes the afternoon dose makes me feel a bit average, kinda shaky but still ok to ride. This never happens in the morning.

 

I'm not ready for dose reduction yet. My last two pcr were < M4.0 (one was a reduced resolution PCRU) so it that sense I'm close but we are still discussing the possibilities of a sibling project so no need to agitate my doctors even more. The scientific literature on dose reduction is building, certainly as an alternative strategy to stopping. So from my point of view the later I introduce the topic with my doctor the greater the chance it will be old news.

 

Fantastic! A sibling project - I look forward to hearing about that!

 

I think given the potential issues with Sprycel and lungs, and the fact I probably can't start at lowered dose, I think I will try Tasigna first, switching to either is scary anyway so it almost doesn't matter which one I go with. I'd love to get rid of my frog eyes too trailcml

He said that in his experience, around 80% of people who switch from Gleevec to Tasigna feel better on it. Interesting stat, I don't think they have the same stats for Sprycel, so grain of salt and all that.

 

Seeing my haemotologist next Monday, so fingers crossed!

 

Thanks for everyone's help on this for me - it's a bit of a stressful decision and I really appreciate the input

[jjg]

Good luck!!!!

 

And let us know how it goes....

[Pin]

Thanks jjg! Will do - hopefully it will be sooner rather than later...