8 replies to this topic

[HeatherZ]

I have not been on the boaard for a while (not even sure how long it has been) out of frustration but today I was looking for some info and know this is the best place to find it   Thank you all for being a wonderful font of knowledge.   I was DX in March 2010 and started G400 right away.  I hit FISH neg after a few months but the PCR numbers were very slow moving.  I had asked my Onc several times about a drug switch and he kept saying he was not in favor of that.  In March 2013 I finally hit MMR and started to feel encouraged once again that maybe I would see PCRU soon.  When I had my bloodwork done in June I saw a 1.3 log increase in my PCR from the March number.  I had to switch docs between March and June because the first one retired.  The new Onc said it was possible it was a fluke and to wait a few months and repeat the bloodwork.  I had the bloodwork done a few weeks ago and the PCR number was even higher.  I had a BMB a week and a half ago to check for mutations.  I saw the doc today and there are no mutations so I am going to switch to Sprycel.  I am seriously hoping for a better side effect profile and a much better response. 

So, who can give me some encouragment that when they made the switch they felt so much better?

[Marnie]

Hi, Heather. . .

I switched from Gleevec to Sprycel and have been very happy with the change.  My PCR numbers were slow on Gleevec.  When I switched to Sprycel, they immediately dropped to around .002 and hung there for a year or so, and then for the next year have been PCRu. 

My side effects on Sprycel have been a lot better than on Gleevec.  I had a minimal headache for a week when I switched.  I started on half-dose of Sprycel for a week and then went to full dose.  I think that helped. I was pretty much side-effect free for quite awhile.  Lately, however, I have been having issues with a rash on my scalp, neck, and ears.  Very annoying.  I'm hoping to convince my doc to let me alternate 100mg, and 50mg every other day, in the hopes that reducing the meds will help with the rash.

Switching from G to S was great for me.  I hope you have the same kind of results (minus the rash).

Best of luck,

Marnie

[chriskuo]

Overall, my side effects were better on Sprycel.  After a year, I did have to stop taking it for a while because a severe pleural effusion developed.

Make sure you are aware of the symptoms so you get checked out quickly and don't let it develop to the point you have to take a drug holiday.

[CallMeLucky]

It was not without its challenges, but today on Sprycel I have very few side effects.  QOL is considerably better than when I was on Gleevec.

[Tedsey]

Due to many issues on Gleevec and a very slow response, I was switched to 100mg Sprycel.  I feel very well on the drug (the only thing I can really complain about are mouth sores, however, after 3+ years, my hem/onc just gave me a miracle medicine that totally keeps them from developing--I just swish when I feel them coming on).  I was dx. Nov. 2009 and started Sprycel Aug. 2010.  It has taken a while, but I have been PCRU since last May.  My last test just came back PCRU again.  I feel this is a miracle.  And I wish you the same deep response.

Tedsey  

[Tedsey]

Dear Luck,

Glad things have calmed down and you are feeling better on the drug.

Wishing you continued excellent health,

Teds

[GerryL]

Congratulations on your second PCRU Teds.

[SUE]

Congratulations, Tedsey.  That is great news.

[pamsouth]

>> a miracle medicine that totally keeps them from developing--I just swish when I feel them coming on).  <<

What is the name of this miracle drug?  I have had mouth sores for years. One on the corner of my mouth that never goes aWay.

Pamsouth.