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why switch ?????


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#1 jenn

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Posted 09 November 2012 - 11:34 PM

The Dr is asking my husband to switch to Sprycel... dx in july 2010 on  Glevac till now last pcr came in @ major combined .004 started @ .0283 in 2010... these are his lowest counts so far and  he has minimal side effects.His dr (new one) says he would like to see a better response and would like him to switch to Sprycel..... I honestly see no reason as his counts are good and he has no side effects.He has started his battery of tests and is already approved for the Sprycel.Should I snap or just let him switch,he seems to think that he needs to be .oooooooo and I dont blame him for wanting that but dont want to see him has a million side effects ( he has borderline low platlets)from Sprycel when he is doing so good at this time ... advise please, thanks jenn



#2 Tedsey

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Posted 10 November 2012 - 12:00 AM

What I would give for .004!  I was dx in Nov. 2009.  I see no harm in switching.  I am not really sure the "side-effects" I get from Sprycel are really side-effects or just what comes with growing older.  I feel pretty good on Sprycel and would say I have no side-effects except low WBC and platelets (which I cannot feel).  Nevertheless, your husband is doing very well on G.  I don't think there is a great reason to switch.  But who wouldn't want to get the big 0?  I would say he has a good chance for PCRU if he switches.  But, his response on G is so good, I would think 0 or .004, it wouldn't really make a difference concerning longevity.

Take care,

Tedsey



#3 jenn

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Posted 10 November 2012 - 01:42 AM

I guess im just worried about the side effects of sprycel that are not happening w/ glevac.. the dr told him, we can wait till you become resistant to glevac ,like it was a given. or switch now... I think either way neither drug is a "cure" why waste one when another is working for now.If his counts go up on glevac later whats the difference ? he can switch then,or will that make it less responsive to the sprycel ?



#4 hannibellemo

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Posted 10 November 2012 - 07:35 AM

I personally would not switch since he is doing so well. there is no reason to think he won't get to PCRU on G eventually. I have been on Gleevec with no side effects to speak of, until high liver enzymes, and I am on Sprycel now. I much preferred G. There is no reason he can't go back to G if Sprycel doesn't work out.

Good luck!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#5 Trey

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Posted 10 November 2012 - 10:20 AM

Most Oncs would have him continue to take the Gleevec.  The reason is the same as your thinking, which is he has responded well and the side effects are minimal, so let's not break something.  Some people get to a zero PCR on Gleevec over many years, so your husband would likely get to zero within a year or so anyway.

But there is no wrong answer here.  It is a decision that can be reversed later if necessary.  Overall, if it is something your husband really wants to do, it would probably be better to allow him to do it.  The person with the disease likes to feel like they have some degree of control over this situation.



#6 Tedsey

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Posted 10 November 2012 - 11:00 PM

I was on G before S.  Most people are given a week or two break before switching from one drug to another.  Some people report they felt horrible, like getting the flu for a few days to a week.  Headaches with Sprycel seem to be common in the beginning.  And there are some who report they had no issues switching from one drug to another.  I feel extremely well on Sprycel (and lately, I have been feeling great).  Like Trey said, if your husband really wants to switch, there should be no holding him back.  I agree, being diagnosed with a disease one has very little control over, having the choice of drugs may help alleviate some anxiety.  Again, like Trey said, your husband could always go back on G.  How you feel emotionally is just as important as how you feel physically.  The majority of us survive the side-effects well.  If your husband develops any, he will too.  And some are only temporary until the body gets used to the TKI.

May I be so bold to say that the comment your husband's onc made was pretty ignorant (and most especially since your husband is doing so well).  Maybe the onc has his/her own clandestine agenda for wanting him to switch to Sprycel.  The last time I checked, there exists not one human on Earth that can definitively tell the future.  Your husband may never lose response to Gleevec, ever.  And if he were to lose response to Gleevec, why would he never on Sprycel?  Very strange logic.  I think this onc needs to study up on his TKIs.

If I am not dreaming, having CML is not just going on a TKI and waiting around for it to quit working.  The hope is that it will work indefinitely.  And it will allow CMLers to outlive their disease.

Tedsey



#7 Guest_billronm_*

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Posted 11 November 2012 - 02:04 AM

Hi  Jenn,

  I was dx in August 2007 and I never reached pcr until October 2010, Yeah the big Zero, I had a lot of gi issues while I was on Gleevac, but my Onc didn't want me to switch meds yet. Sprycel and Tasigma were still new to the scene I guess. Then in Oct.2010 he gave me a 5 week break from G, then put me on S which agrees with me so much better. But if Gleevac would have agreed with me I would have stayed on it. Almost 2 years on S and I'm still Zero. As long as your husband is doing good and has minimal side-effects he should tell his Onc he doesn't want to switch. I guess some peoples bodies just take longer to respond. All these meds are still new and more are coming out it seems like there is a big race going on to see who can improve the fastest, with no consideration about the side-effects we go through. Good Luck    Billie



#8 Lizzybee

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Posted 15 November 2012 - 11:38 AM

Hi Jenn,

A 2 log reduction from .0283 would be .000283.  Your husband is at .004 (converted to a percentage, it would be .4%), so he hasn't reached a 2 log reduction or complete cytogenetic response yet.  I would have probably been harassing my onc to switch me sooner in that circumstance.

Best wishes,

Elizabeth



#9 Trey

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Posted 15 November 2012 - 08:45 PM

Lizzy,

Just to clarify, Jenn has previously described him as CCyR by BMB.  So that is why sticking with Gleevec would be OK; but your point about switching is also valid. 

http://community.lls.org/thread/11698



#10 Lizzybee

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Posted 16 November 2012 - 07:57 PM

Thanks for pointing that out, Trey. 






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