13 replies to this topic

[wareagle58]

Thanks to Tex, Susan61 and pammartin for your help. As I stated, I was diagnosed with CML last week. My doctor has encourage me to enroll in a clinical trial for which I would receive treatment with Tasigna. It is a single arm study and will last for 24 months. I would take 300 mg twice daily. My doctor did not mention Sprycel to me and just stated that Gleevec is very expensive. (If I enroll in the study, I will receive the Tasigna for free.) Do you all think the Tasigna trial is the best choice?  Many thanks!

[CallMeLucky]

All three drugs are very good.  This is the age or "individualized medicine" so each person may react a little differently and the best drug for one is not necessarily the best for another.  The thing is no one knows which is best until they try them.  Most people don't get the offer to be in the trial and are just as likely to have their doctor prescribe Tasigna as one of the other two.  Gleevec is the oldest drug and will be off patent in a few years when it will go generic and be cheaper, but as for today they are all very expensive so if you can get for free in trial I see no reason to not take that option.  More than likely Tasigna will work very well for you and if it doesn't, trial or not, you can always switch to a different drug if you need to.

[matt92711]

Go for it! I was diagnosed a half a year ago and started on Tasigna (300mg 2x day) and have had a good experience with it. I think the side effects are less with Tasigna as compared to Gleevec (I have never tried Gleevec only Tasigna). Sprycel, I think is currently approved as second line as there may be a higher chance of serious side effects (I think pleural effusion). Although Gleevec, has been around longer than Tasigna (hence there is a better safety profile for Gleevec), I think Tasigna has been effecting quicker responses, which may affect the long- term effectiveness of your treatment.

My side effects from Tasigna are: Hair Loss, light rash, itchiness, for a short time there was some joint ache, some headaches. Not fun, but nothing too major, and not worse than people get on the alternative drugs I think.

One other thing the QT elongation concern arose out of the initial trails with Tasigna, I don't think since then there have been any cases of deaths due to QT elongation. So if you go with Tasigna, have your doc do the recommended EKG's but I would not worry too much about that.

Good luck.

[Trey]

I would definitely do it.  Tasigna is as good as any drug to start with.  Free drugs and they monitor you very closely.  It is a good deal.

[wareagle58]

Thank you, matt92711 and CallMeLucky! I appreciate your prompt response. Feeling better about starting Tasigna, also feeling very fortunate that it will be free. Hope both of you are feeling well. God bless you both!

[wareagle58]

Thanks, Trey! Appreciate you answer. Have a great day.

[Susan61]

Hi:  Glad you got onto the right discussion board.   I sometimes go onto the newly diagnosed in case someone is trying to find out where they should be with their problem, and I saw you were new to CML so I directed you to our board.

I think you will do fine on the Tasigna.  When Gleevec was first introduced, I did the trial for Gleevec.  I did not have to pay either.  It is free because your letting them try their drug on you to see how it works, but Tasigna has been around for awhile now.  We have a lot of people who have had a very good response to it.

     They will monitor you closely and be sure this is the right drug for you.  I wish you well, and glad you joined us.

     Just get on and ask questions or share your experience that could help somebody else.  As you can see you already got a lot of information.  You will get to know who is who on here as we get to know you.

Susan 61

[pammartin]

Hi-ya,

Glad you made it to the CML board, welcome!  I see you have already received many great responses and advice.  This is a great place, welcome.

Pam

[NotJack?]

Hey wareagle !

I have been on T since last August.  Excellent results,  side effects tolerable,  just watch out for the sun. All of the tkis seem to make your skin thinner, and T is thinning mine.  You are saving yourself and your ins $8500/mo last I checked, if you get it free.  The roller coaster calms down after 6 mo.  Congrats on getting in on the study, and things will work out just fine.  Read trey's blog for accurate info:  http://treyscml.blogspot.com/   Take care, Jack

[GerryL]

Hi Jack,

Check with your doc to see if it is okay to take fish oil with Tasigna, if you can, it may help with the skin thinning and also sun damage. I found out that it can be of assistance with this on one of the GIST sites. I've been taking fish oil long before I was diagnosed, so far have had no issues with thinning skin or sun burn (though I take the ususal precautions with sun screen) and am on 400mg Gleevec.

[Cliffee]

Sorry about your joining the CML club.

I'm relativly new myself. I was started on Gleevac last year but have read and heard good things about Tasigna.

Two years for free with extra monitoring sounds like a step inthe right direction to me.

Good Luck!

[NotJack?]

Thanks Gerry, I will.  My brother has been kidding me about becoming a visible man, and finding a new career with the carnival.  Other than the skin thing, and minor inconveniences, this affliction has not kept me from playing hockey or anything, aside from the fasting timing.  Thanks again Gerry, and hang in there wareagle, this is not a panic situation, CML is slow, you have time to digest all of this.  And, try not to micro manage the numbers, the trend is the big thing.  Sounds like you are on a good path, go out and have dinner and celebrate that you have been diagnosed and that you have a team closely monitoring your situation.  If you are on a trial, you should have a well schooled team who are experts on CML.  Take care, Jack

[wareagle58]

Hi Cliffee, thanks for the reply. Hope you are doing well and having a great day. Thanks also to Jack, pammartin and Billie. Great to have such wonderful support.