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Switch from Gleevec to Tasigna for a Five Year Study?

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#1 Nades


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Posted 23 May 2013 - 01:35 AM

Hi All!

I'm new to the forum but not new to CML. I was diagnosed in November 2002 and was put on Gleevec right away.  I've actually been doing fine on Gleevec. I do have some symptoms (weight gain, muscle cramps sometimes, a little bone pain every now and then) but otherwise I think I'm ok.  So much so that many years ago I decided to get off of CML boards and forums and just start moving forward, living my life, and stop focusing on the CML since Gleevec had it under control, know what I mean?  I take my meds regularly, of course, and go to all of my scheduled doctor appts but otherwise I sort of ignore that I have this.   In this regard, I haven't kept up with new meds, treatments, etc.

The other day my onc spoke with me about switching to Tasigna and taking part in a 5-year study to study patients on Tasigna, etc.  I'm reading through the patient info now and have an appointment with my onc later today to discuss it further.  I really don't know what to do.  I'm thinking if I'm ok on Gleevec, why change?  It's also a bit of a lifestyle change taking meds 2x a day as opposed to one Gleevec pill in the morning, changing my meal schedule, etc.   Also - I don't mean this to sound the wrong way - but occasionally I meet my girlfriends on a Friday afternoon for a drink or two or sometimes the hubby and I will have a glass of wine in the evening.  Does all alcohol consumption have to stop or is the very occasional drink ok?  Sometimes when I'm out of my regular routine (weekends, vacation) I accidentally forget to take Gleevec that day.  I will try with all of my might not to forget to take Tasigna but I can't rule out accidentally forgetting every once in a while....  I don't know.   I guess I'm just afraid of something new.  I've read Tasigna is mostly for those not doing well on Gleevec but I'm ok.  My onc says it could be better though.  Would appreciate any advice, experience, etc. in helping me decide whether to make the switch or not!  Thank you!!!


#2 TeddyB


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Posted 23 May 2013 - 03:50 AM

Hey Nades, ive been on Gleevec myself for the last 13 months, and i have been trying to keep up with the latest in tki therapy, but i stil dont know very much compared to the experts on this forum.

Anyway, how are your PCR numbers? This would be a huge factor for me if i was to do a change, and especially to a drug i would have to take 2 times pr day, and with fasting 2 hours before and 1 hour after. If my numbers were good, lets say well below 0.1%, i would probably not change drugs, or unless i saw an increase in the pcr results over a longer period of time.

If your PCR numbers are good, your side effects and quality of life is good, then why change? Also, what happens after the 5 years study is over? Will you continue on Tasigna then, or put back on Gleevec?

Regarding alcohol, i think Tasigna can be slightly harder on the liver than Gleevec, but im pretty sure an occasional drink is fine, you will probably be monitored closely the first months to see if your liver values are good. I would at least wait a few months until the body has adjusted to the new drug, and most importantly i would ask my doctor

I guess these factors would make me consider a drug change:

  • Cost
  • Side Effects and quality of life
  • Bad respons to treatment

Thats just me though

Anyway, get your PCR results and post them here. It will be easier for people here to help you if they know these.

I hope you get a lot of good advice from the forum residents.

#3 Beanie


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Posted 23 May 2013 - 07:35 AM

I've been on Gleevec since diagnosed three years ago and am doing fine and am so thankful.  I would not switch if they asked me to.  What happens if Tasigna doesn't work as well for you and then you go back on Gleevec and you have some sort of mutation against that?  I would stay where you are.  Plus on January 4, 2015 we will be able to get Gleevec in generic form where Tasigna will be under patent for a long time I believe.

#4 rct


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Posted 23 May 2013 - 09:15 AM

Beanie wrote:

...Plus on January 4, 2015 we will be able to get Gleevec in generic form where Tasigna will be under patent for a long time I believe.

There will be more patients being "encouraged" to switch to Tasigna without meeting any of the criteria that have been used to indicate a drug change.  To be honest, our very own oncs, conservative stick in the mud as they are, have actually mentioned switching my Mrs very complicated treatment from her 5 or so years of PCRu Gleevec to Tasigna.  Forget all the asking to do things differently that she has been refused.  Forget dosage changes or alternating amounts, forget that stuff she has patiently asked to do and be rebuffed each time.  But now, just change drugs, out of the blue, for no known reason.

So we'll change oncs again, like we got nothing else to do.


#5 nathaliece


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Posted 23 May 2013 - 02:48 PM

Hi Nadine,

I was diagnosed in 11/10 and on 400 mg Gleevec.  I was PCRU by 3/12.  About a month ago, I switched to 800 mg Tasigna, not because I wasn't responding to Gleevec but to avoid severe bone pain that seemed to be increasing in frequency and intensity.  Although the dosing schedule to a little getting used to, I have experienced a significant reduction in side effects in just the first month.  I have had no GI issues, little to no bone pain and much less fatigue.  We all respond differently but it has definitely improved the quality of my life.  I am a 51 year old practicing attorney who is the single parent of a 10 year old and I am really glad I made the change.  It is fine to have a glass of wine while on Tasigna, just like it is on Gleevec.

I wish you the very best,

#6 Guest_billronm_*

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Posted 23 May 2013 - 09:29 PM

Hi Nadine,

  I really admire your attitude in dealing with your cml. I wish I could do that but I keep hitting bumps in the road that keeps reminding me of my disease. I couldn't handle Gleevac because of my gi issues. I'm on Sprycel now and I really like it I tolerate it well. I had a plural effusion in March so they took me off S right away. I convinced them to let me go back on it I have to get a chest x-ray every month for a while, and right now i'm getting iron infusions every week for 4 weeks. So hopefully in a couple of weeks I can start to relax. I'm really hoping I can stay on Sprycel, I know what to watch for I don't want to change meds. All the tki's come with side effects and I sure don't want to go on another one. Especially Tasigna, I could never follow that schedule, and there seems to be a lot of skin problems at first. I have always had sensitive skin so I don't even want to try that. I can't advise you on what to do, but my motto is if it ain't broke don't fix it, and I don't like surprises! Good luck to you!      Billie

  ps wine or any kind of alcohol is fine with tki's in moderation I went over moderation a few times and I'm still here.  my dx was aug 2007

#7 CallMeLucky


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Posted 23 May 2013 - 10:51 PM

If you have a good response to Gleevec (deep MMR) and you are satisfied with your quality of life then there is absolutely no reason to change drugs other than to put more money in the pocket of the drug company.  If you do not have a deep response or if you have side effects that are bothering you then it would make sense to switch.  As the old adage goes, if it ain't broke don't fix it.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


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