I was diagnosed around may 2016, and started out with Sprycel 140mg, because I was in chronic but quite advanced phase. Luckily I responded very well, and I almost got to MMR in 6 months, definitely hit it in 9 and am now at almost MMR 4.5. Meanwhile I had a few bouts of PE.
For me PE manifests as shortness of breath, ie, I go out of breath sooner than I should when making some activity (like gardening). The very first time I also experienced some minor pain in my right lower chest.
PE first hit me on dec 2016, quite soon, probably because of the higher dosage. Doctors wanted to get me to MMR as soon as possible, so no drug holiday for me, only furosemide and prednisone. I was x-ray monitored and the prednisone dosage was gradually reduced. PE receded and almost disappeared in a matter of weeks, so no more prednisone.
PE manifested again a few months later, so when I was 1 year onto therapy my dosage was reduced to the standard 100mg. Again, some prednisone, and it almost went away...
But it came back. Also, I got pericardial effusion, completely asymptomatic. It was revealed in a routine chest ultrasound. Doctor told me it's less common, but basically the same beast.
So last november, when PCR hit 0,0035 my dosage was reduced to 80mg, after a 3 weeks drug holiday. The drug holiday was great, I hadn't felt that good in years :) When resuming Sprycel I had a couple of rough weeks: the usual headaches that I had when inisially starting out, etc, but luckily at a much lower intensity than before.
Now I am feeling quite well, no particular side effects, apart from a mild tiredness at evening; but I cannot tell wether a small amount of PE is still there.
When my dosage was last reduced the doctor was considering whether:
- lower Sprycel dosage
- switch to standard dosage Gleevec: less potent, but probably more than enough given my response
Honestly I am happy we went the Sprycel way, PE has been a nuisance and I had other issues, but I love the fact that Sprycel has no interaction with food (apart form the infamous grape), I can take it without worries about nausea etc. Also, a bit scared by a new drug.To be honest, Imatinib is considered far less toxic than Dasatinib, so I believe I should not worry; but the devil you know etc...
If PE is still there, I'd much prefer to try 50mg Sprycel than switching; but of course I am deferring to my hematologist's opinion on this. He's not so keen on dosage reduction, although in American forums I have learned that they are quite routine in the US once one hits MMR 4.5 or undetectable. But of course I trust my doctor more than a forum, so we'll see.
To sum up, we're in the same boat, just wanted to tell a similar experience :)
Good luck to both of us!