25 replies to this topic

[blueheron]

DX June 2013, hit MMR (0.089) last month. Would love to reduce dose from current levels (100mg Sprycel)

Doc wants to stay the course. Side effects are chronic malaise/fatigue/fog and tendon issues. Prob best to stay at 100mg for possible PCRU, then ask for reduction, correct? Thanks.

 

 

[August1]

Blueheron, I am right there with you. I am also on Sprycel and just recently reached MMR and then PCRU. I spoke with my oncologist and he has no problem trying a lower dose (80 mg) but wants to continue to monitor progress over the next testing cycle or two to ensure that we see a trend developing. I am ok with this as I'd rather be on the safe side but I am really hoping the trend continues. It would be so great to be able to lower the dose! Best of luck to you.

 

Take care, 

[blueheron]

Thanks August1! Good luck to you too. I hope we can get our doses down soon!

 

best, blueheron

[hannibellemo]

blueheron,

I started Sprycel in Oct. 2009 after 9 months on Gleevec. I had to stop G due to severe liver intolerance. Reached MMR on Sprycel after 8 months and developed pleural effusion 2.5 years in on Sprycel 100 mg. Stopped Sprycel for 9 weeks to allow pleural effusion to resolve. When I resumed Sprycel at 50mg. I had nearly lost CCyR. Regained MMR on 50 mg. at 15 months and was undetectable on last test 3 years later - still taking 50mg.

I don't think it matters how long you have been on Sprycel in order to reduce your dose, although I would personally want to have reached at least CCyR. If Sprycel is going to work for you it probably will at a lower dose, too, albeit more slowly.

Absolutely no peer studies to back this up; my personal experience only! As Trey says, "your mileage may vary".

[blueheron]

thanks hannibellemo, glad you regained MMR and then went PCRU. How would you compare side effects on 50mg vs. 100mg?

[hannibellemo]

blueheron,

 

After a relatively benign introduction to Gleevec until the liver toxicity I was surprised at how awful my first few months were on Sprycel. It took about 4 months and then I was, for all intents and purposes, side effect free. Now, obviously that wasn't completely true but I can say that I have nothing that really interferes with the quality of my life. The pleural effusion cleared up and I have had no recurrence, knock wood, since on the 50mg. So, I can't really say that the lowered dosage has had much affect on my life either.

 

I don't dwell on having to take this drug everyday, it is what it is. I just consider myself damn lucky to have it and have it work for me! 15 years ago I would likely have been pushing up daisies now.

 

Good luck!

[Trey]

BH,

You have had a good response but not necessarily speedy.  Nothing inherently wrong with that.  Speed of response is generally related to drug dosage, but the relationship differs for each individual.  You are at a point where you could decrease dosage somewhat and accept the possible extension of response time (i.e., slower PCRU).  You can try it to see how it goes, and I doubt there would be any retrogression.  So it generally depends on how much your quality of life could be increased by lowering dosage to maybe 70mg.

[CallMeLucky]

While I won't say it's risky to lower dose, I will say make sure you are mentally prepare to have your numbers go up, since that is a possibility. I was pcru, lowered my dose to 50 and my numbers went up. I went to 70 and then 80 and they kept bouncing around I finally went back to 100 and thankfully PCRU again. Most do well , but just know all the possibilities and make sure you are comfortable with your choices.

[blueheron]

Thanks everybody, good points all. Glad to have this community to hash over the issues and options!

[winespritzer]

Dear All,

I was mmr at .045 in April at 15 mos from diagnosis. Was hoping to go further down at 18 mos. But with a different lab, my bcr/abl 1 is 0.07% .What a sort of disappointment. Have been hoping to reduce 100mg Sprycel dosage forever, although I am lucky to be able to complain!!

Hope the bcr/abl doesn't increase at 21 mos testing.

Doctor says numbers are still down and I am fine.  Is that true?

Thanks,

Winespritzer

 

PS

Son is doing PanMass Bike Challenge raising $$$ for all of us for Dana Farber this weekend - in the hot sun. Last year it was in the cold rain. .

[Trey]

With a different lab and fairly close numbers this result is fine.  It is also a time period when PCR plateaus occur, so don't feel all alone on that.

[winespritzer]

Trey,

You're the best!

Winespritzer

[Billie Murawski]

Blue Heron, congratulations on your response but don't be too excited about lowering dose it takes a while.I was on G400 for 3 years until I reached pcr then I went on 100mg sprycel for about 3years then 50mg for a year and now I'm on 20mg for well over a year and I still am pcr. Aug 7 is my 8 year cancerversary it takes patience but every day is a day closer to pcr with the minimum dose of meds.

                                                                                                      Billie

[Gail's]

Billie, love the cancerversary!

[Billie Murawski]

Thanks Gail.  I just can't believe it's been that long already, It seems like just yesterday I was writing my obituary every other day.(I had to get it right). When you write your own obit you can be anything you wanted to be, ballerina,pilot, etc. and all people can say is I didn't know she did all that, they can't question you so we might as well go out with a bang, I think I'll leave the pole dancing out though I don't wan't to spoil my image hee-hee.   

[Gail's]

Ooooo, Billie! Love the idea of creative obit. Have to work on it. Maybe do all on my bucket list. At least in my obit.

[tazdad08]

While I won't say it's risky to lower dose, I will say make sure you are mentally prepare to have your numbers go up, since that is a possibility. I was pcru, lowered my dose to 50 and my numbers went up. I went to 70 and then 80 and they kept bouncing around I finally went back to 100 and thankfully PCRU again. Most do well , but just know all the possibilities and make sure you are comfortable with your choices.

Just what I was thinking. I had been on a lowered dose of Tasigna for two years. The quality of life was definately better. I still had side effects, but they wasnt as bad. The news that I lost pcru hit me harder than I had expected. I knew it would happen, and I thought I was prepared for it..... but WOW, was I surprised.  I do have to say that I dont regret lowering my dose and I will lower it again when i regain pcru

[Buzzm1]

After being PCRU for almost 4 years I began lowering my Gleevec dosage last December.  I'm hoping that continuing to lower dosage, while maintaining PCRU, will lead to increased energy, fewer side-effects, and a better quality of life.  So far, so good.

 

Gleevec dosage

200mg July 17, 2015

250mg May 5, 2015

300mg Dec. 7, 2014

400mg Feb. 2, 2010

[Billie Murawski]

Ooooo, Billie! Love the idea of creative obit. Have to work on it. Maybe do all on my bucket list. At least in my obit.

Gail, It's fun and nobody can call you on it, being hard working middle class people and raising a family doesn't give us much time or money to do everything on our list so dream on it's fun and we all eventually need an obit it might as well be a good one! I think I would have made a great clown (guess I'll put that in my next obit). I truly think I am a clone of Erma Bombeck .

[Gail's]

I think you sound a lot like Erma, Billie. Some clowns are a little creepy so I'm not sure about that. Inside, I'm a wonderful ballerina but none of the super foofy ballet stuff. More strong and graceful. Oh I'm also an incredibly talented artistes and concert pianist--in my dreams!