7 replies to this topic

[Gaylemarcy]

Been a while since I have posted.  I am well over my second year fighting CML, been through Gleevec, Tasigna and i have now been on Sprycel for well over a year.  All was well, till last fall.  PCR showed an increase, it has shown progressive increase since the fall of 2011.  While I have accepted that, I have also accepted the fact that I will most likely undergo a transplant this summer.  However, at my last appointment I showed an increase in WBC after almost two years of  hema remission.    Dr prescribed an increased Sprycel dose to attempt pulling the PCR down as well as get the WBC back in count.  I am currently on 140 mg per day (since August 2010); he has increased to 200 MG per day.  Has anyone else ever taken this dosage?  Also, I suffered from SEVERE bone pain from Gleevec and Sprycel.  Dr told me to take an allergy pill daily, ever since then I have not encountered one bit of bone pain.    I have learned over the past few years, you have to take the good with the bad! 

[Sloater]

I have never heard of taking more than 140Mg a day.  I have been on Sprycel for over 2 years and only had 100 MG daily.  Something must be concerning your Onc.  What type of allergy pill are you taking?  I would like to try that for my bone/muscle pain.  Good luck with the 200 mg, let us know what it does for you.

Sloater...

[Gaylemarcy]

I cant find anything at 200 Mg.  Anxious to see if I respond or even tolorate!  At this point we are simply buying time I guess!  I take an Allegra every morning with my sprycel!  Let me know if it does the trick for you!  I was soo happy to rid myself of constant and extreme bone pain!!

[Sloater]

awesome, I will give it a shot...

[Trey]

That is above the standard dosing, but the Onc has the option to deviate.  Worth trying.  If it were me, I would take it 100mg twice per day. 

Your other posting did not say if you had done Kinase Mutation testing.  That would be a very good idea, since it could show if a clinical trial drug (Ponatinib) might work for you. 

[Sloater]

Excellent suggestion Trey, Ponatinib is third generation and if Sprycel is not working, may be the next step here. 

[d_cary]

I would not take sprycel twice a day.  There are some cases where when taking it twice a day you develop pleural effusion...fluid filling the space around your lungs...usually you take sprycel once per day.

Google Sprycel and Pleural Effusion for more info.  I just had this reaction to sprycel and had to quit...plus they found t315i mutation...so will have to try ponatinib.  Good luck...I would have them check for mutations that might be causing the resistance to the drug before I increased dosage too much...talk to oncologist about mutations...get tested!

[CallMeLucky]

Sprycel causes pleural effusions in many people at varying doses.  The higher the dosage, the higher the risk.  Some people will get them on a low dose and some will not get them even with a high dose.  I will say that I have not read or heard about anyone going up to 200 mg of Sprycel, that does sound like a lot considering how potent it is.  Be sure to get a baseline chest x-ray and insist they monitor you very closely for PE and for PAH.

Best if luck