26 replies to this topic

[0vercast]

Has anybody here tried a 800mg dose of Gleevec?  I don't recall ever hearing about anybody taking this much.  It appears I'm going to have to give it a shot for a month before switching to Sprycel if things don't turn around quickly.  My FISH test came back today at 84% after almost three months of taking Gleevec, mostly on 400mg doses.  It was 98% upon diagnosis.  I don't have any side effects from the standard dose of Gleevec, but I have a feeling I'm not going to be so lucky on double doses.

Joe

[Marnie]

Sorry to hear about your FISH results.  Have you had a mutation test done?  It might help your doc decide the best line of defense.  I think there are some folks here on high doses of Gleevec.  I had suboptimal response to 400 mg Gleevec and have switched to Sprycel, which gave me excellent results in a year.

Good luck,

Marnie

P.S.  I may have asked you this before. . .finally noticed your avatar.  What part of Minnesota are you from?  I'm originally from Mankato.

[0vercast]

I doubt it.  I'll ask about the mutation test next time I see the doc.  Don't these mutations occur after long periods of time on a medicine?  I'm not 100% sure what it is exactly. 

I'm from St. Cloud, and I've been a Twins season ticket holder for years.  That's a pretty raw deal nowadays.  Ha

[hannibellemo]

Hi, Joe,

I was also a slow responder on G. At 3 months I went from 98% to 74%, but at 6 months I dropped to 4%. Unfortunately, at that time it was also discovered that I was having a severe liver AE so G was discontinued for 7 wks. and I was switched to Sprycel.

Sometimes Docs just have to give the drugs a little time to work! Another 3 months might make all the difference for you.

Pat

[0vercast]

That's something to forward to then.  I want to stay on Gleevec because I feel fine while taking it.  Did they step up the dose or keep you on 400mg the whole time?

[Skittles]

I'm not sure if helps or not but I do know a guy that was taking 400mg Gleevec but did not quite reach MMR on that by 18 months so he was upped to 800mg Gleevec and became PCRU fairly soon afterwards.  After about 4 years PCRU on 800mg Gleevec he now takes 600mg Gleevec and maintains his PCRU status.  The only difference he noticed on more Gleevec was more fluid around his eyes.  He has done very well on a higher dose of Gleevec.  Good Luck!  Skittles

[Trey]

Some people respond better on 800mg after not doing well on 400mg Gleevec.  But overall I would personally prefer to switch to Sprycel or Tasigna.  The response would likely be better.

[Cliffee]

That definately seems slow but I agree, give it another 3 months. What about 600mg? I have a friend here in AZ thats been on 600 for almost 8 years and is doing great. 400 didn't get him deep enough.

[hannibellemo]

I stayed on 400 mg. Are you going to Mayo, Mpls. or a local onc for your follow ups. I live in north central Iowa so I go to Mayo. My doc sees lots of CML patients and my qol was good on G, so he wasn't in a rush to switch. Plus, I had a pretty heavy cancer load another reason he was willing to give it more time.

Good luck,

Pat

[0vercast]

There's a brand new cancer center just a few miles from home that's partnered up with the Mayo, so I go there at the moment.  I might end up at the Mayo once my need for visits becomes less frequent.  My onc just doesn't see very many CML patients (5), so I don't have as much confidence in him as I wish I had.  It sounds like I'm his first patient who hasn't had a by-the-book response to Gleevec, so he's never prescribed anything else.

I have a heavy cancer load as well.  I'm told that might be contributing to the slow drop.  It took an unusual amount of Gleevec and Hydrea just to get a hematologic response, and I'm a pretty big guy (6'4" 210, large frame).  Although there's no indication at all that the disease is accelerating, he says he wants to be proactive and switch drugs next month if my next FISH isn't up to par.  I'm thinking I'd like to be a little more patient because the G is so easy on me, but I don't want to gamble with my life.  He warned me that Sprycel has a higher frequency of side effects, and more serious side effects than Gleevec, which has me a little worried, to be honest.

[TeddyB]

How about trying Tasigna, or wasnt that an option?

[0vercast]

We would go with Sprycel first, and then Tasigna if that didn't work.

[Trey]

Patience is not a virtue when the current drug is not working well enough.  You either need higher dosage or switch drugs, either of them very soon. 

[0vercast]

I asked about the 600, since I had done that already after dx to get my WBC counts down.  The WBC drop was slower than expected and my body handled the 600 pretty well, so he thinks it's best to try 10 days of 800mg to see what it it causes my other counts to drop too far.  If the 800 is too hard to handle, then we'll do 600.

[0vercast]

I was wondering about that.  Like how soon?  The longer my counts stay up, the higher the risk of this turning ugly, correct?

[Trey]

I assume you are on 400mg Gleevec now.  So your Onc saw that you did not respond very quickly to 400mg, put you on 600mg, then back to 400mg (and no side effects issues)?  Poor procedure. 

Although the probability of progression is low, you just do not give CML any advantages.  It must be attacked hard with the best drug you can tolerate.  800mg often does not work much better than 600mg.  But if you want to give it a month, you at least responded somewhat to Gleevec so far.  But personally, I would press hard for a drug switch after 30 days unless there was a considerable drop in FISH.

[0vercast]

"So your Onc saw that you did not respond very quickly to 400mg, put you on 600mg, then back to 400mg (and no side effects issues)?"

Upon dx, I started with 400mg Gleevec and 2000mg Hydrea.  With that, I had very little or no drop in WBC , so we temporarily went with 600mg and 4000mg for two weeks until hematologic response and a WBC of 3900.  Then back down to just the 400mg standard dose of G for the next two months until my recent FISH test.  The results were so unexpectedly poor that he doesn't even want to try the 600 again, unless the 800 makes my counts drop too much or if the side effects are too severe.  We're going up to 800mg for the next month and then another FISH test.  After that, "I'll almost certainly be going to Sprycel unless the 800mg puts a huge dent in the numbers," says the doc.  He said sometimes he would be patient, but not in my case.  He doesn't think Gleevec is for me anymore.  This next month is just to put all doubts to rest.  I'll be the first patient of his that hasn't had a perfect response to the G.  That's a damn shame.  I feel better than I have in at least a year while taking Gleevec.  Even the 800 is a breeze.  I just hope Sprycel is half as easy.

BTW, thx again for the consults. 

Joe

[0vercast]

This is really promising.  I'm looking forward to the next FISH test in three weeks.

http://www.liferaftg...of Gleevec.html

[susantheresa]

Hi.

I don't know if this will help but i started on 400 mg of G and after 3 months my dose was raised to 800mg.  I had alot of fluid but tolerated the dosage well. the opportunity presented itself and I moved forward with a transplant.  Three months after the transplant, I relapsed and started all over again in Hydrea and 800 mg. again of Gleevac and lots and lots of other drugs.  I am cml and phl free now after 7 years.  Spyracel and Tasigna WAS NOT even out yet as anykind of treatment in 2003 when I was diagnosed. Ask questions lots of questions and maybe just maybe you will be able to stay on G.

By the way did I hear you correctly, you are a Twins ticket holder. Did they ever move up and win more than 10 games??? Ha Ha.  I just finished watching the Phillies almost blow a 7  point lead with the Mets. Final score was 10-6 Phillies.  We are Phillies, Eagles and Flyers fans here in Jersey where I live.  Hard to watch game 1 of the Stanley cup series because the Devils knocked out the Flyers.  Just trying to make some light of some serious stuff we go through.  Take Care..   Susan M.

[Dina36]

""""The high percentage of CCR among these patients is of
significant importance as previous studies of another cancer drug (interferon
alpha) have shown that CCR is associated with a 70 to 80 percent chance of
10-year survival, a positive prospect as the survival time for newly diagnosed
CML patients is typically about five years. """"

What five years, this is so sad Can someone explain this please?????