5 replies to this topic

[rickpister]

I was diagnosed this past September and I am curious to know what CML drugs your oncologists prescribed when you were diagnosed and why.  My MD prescribed 100 mg/day of Sprycel.  He finds it easier (can be taken whenever) for CML patients.  So far I've had no side effects and just achieved hematologic remission.  The hardest part about the drug is remembering to take it.

Thanks, everyone.  And, I am glad to see so many of you a part of this group.  It makes me feel less lonely.  Here's to a great 2011 and a cure!

[CallMeLucky]

Hi Rick - welcome, and sorry you had to join us.  I was diagnosed in June 2010.  I am on 400mg Gleevec per day.  My doctor said that the new drugs are very good, but she is a little more conservative and has history with Gleevec so wanted to try it first.  So far I am responding pretty well with fatigue and muscle aches being the two main side effects.  Sprycel is supposed to be a really good drug and it appears most people tolerate it well and it works very well so it seems like you are in a good place.  There are plenty on this board who take Sprycel, I'm sure you'll be hearing from them.

Best of luck

[janner25]

Hi - I was diagnosed at the end of October and was put on 600 mg/day of tasigna.  My first side effects were hangover type headaches but they naturally went away as the day progressed and only lasted maybe 3 weeks.  Now I still have exhaustion - and I'm short of breath (but not sure if that's related to the tasigna or something else).  My doctor put me on tasigna mainly because most of the other meds had swelling as a side effect and since I'm younger (36) he thought I probably wouldn't want that as a side effect (and he was right).  Plus the results from tasigna have been outstanding on 1st diagnosed people.  I've been happy with how quickly I got to hematologic remission (about 6 weeks in).  So I'm hoping in the next few months the rest of the side effects will go away!

On a side note, I have found this board to be awesome...great people who know what you're going through and are really supportive!  I've had a rough few weeks just digesting everything (when first diagnosed I was in practical mode - get the insurance, meds, work, kids, husband all taken care of).  Then I had a week off work so just too much time on my hands to think about things...this board has helped me realize that all I was feeling was normal...and that they truly understand.  Because as much as family and friends try to understand, they really don't know.

Good luck to you and please keep us updated on how you are doing .

[Trey]

Sprycel was just approved in 2010 as an initial treament for CML.  Tasigna was approved for initial treatment in 2009.  Before that, we had to "fail" Gleevec first. So there is not much experience with starting with drugs other than Gleevec.  The docs are just starting to figure this out.  So most of us started on Gleevec because that was the only option until very recently.  Starting with Sprycel is as good as any.  We each have differing responses to certain drugs, so there is not one right answer for everyone.  Coin flipping works as well for initial TKI drug selection as anything.

[GerryL]

It can also depend on what country you live in - I live in Australia where Glivec is the first drug they prescribe to you, as the government here subsidizes our TKIs and you need to work your way through their list.

[rickpister]

Great stuff, everyone.  Thank you for sharing.  I've been reading these posts for a while before joining and the discussions are far more educational than any website I've looked at.  Anyway, I look forward to staying in touch with everyone as we go down this road together.  As someone said here, family and friends try to understand but they don't truly get it...or something like that.