I keep hearing how horrible the side effects of Gleevac are..however I haven't had very many on Tasigna. Why don't more people take that? My mom said it's a 2nd generation drug and a lot of insurance companies won't cover it. That worries me because right now I'm unemployed and getting Tasigna free from Novartis. If I get a job and they will only let me have Gleevac, how the hell am I going to work and function?? I am only 35, unmarried and have a teaching degree. Not exactly an easy job.
Why don't more people take Tasigna?
Posted 03 February 2012 - 03:06 PM
I didn't even get an option. My doctor just said "Gleevec" first and that didn't work like he wanted then there were some other drugs to try.
Posted 03 February 2012 - 03:53 PM
It may have to do with that Gleevec has been around for so long, it's easy to predict things like side effects or how well a patient would respond. The doctors are probably just more comfortable with it. In fact, when my onc prescribed Tasigna, I was surprised as I'd only heard of Gleevec.
Posted 03 February 2012 - 04:11 PM
Please don't worry about what has not happened yet. I am sooooo trying to do this myself. With the insurmountable "what ifs" with this disease (and in life--wish we CMLers would automatically get a break there), you can drive yourself crazy. If you get a job in the U.S.A., most insurance will not refuse to give you what your oncologist prescribes. And Gleevec works well for many. And for a lot of people the side-effects are few, tolerable, or non-existent. If you were forced to take it (which I think will never happen unless you want to try it), it may work well for you and without any problems. I was on G, but I was showing possible signs of resistance to it. So, I requested Sprycel. My side-effects with G were very tolerable (swollen eyes in the a.m., some minor cramping). I had severe anemia on it, but it is an unknown if it was the drug or the leukemia. AND severe anemia is a rare side-effect, if it is a real side-effect of G. Also, I was never tired on it. BTW, school districts, as you probably know, usually provide very good insurance packages. So, if you are employed as a public school teacher, (I taught for 9 years), likely, you will always have your drug of choice.
So, relax. If the time comes, it is a much better time to worry. Give yourself a break!
Posted 03 February 2012 - 04:19 PM
I can't say why other people stay on Gleevec only that I stay on it because it is still working and has put me in Complete Molecular Response and I do not want to jeapordize that by switching. My doctor wasn't sure if I would maintain my response if I switched so we decided the benefits outweigh the risks (so to speak). Also with only three drugs on the market approved, if I switched then I only had one more drug level to try if the other stopped working. I figure as long as I can stay on Gleevec the better. I also am young and have to think of the long haul. In my mind, I think first step Gleevec then Tasniga then Sprycel then BMT (a step I hope to avoid at all cost).
Posted 03 February 2012 - 04:20 PM
Oh, and I don't really have any bad side effects with Gleevec. I get the bone pain sometimes and a little swelling under the eyes.. not really noticeable...but thats it.
Posted 03 February 2012 - 04:31 PM
For oncs, it's a case of the devil you know. They know gleevec, know how to manage side effects, can judge response, etc. change takes time.
My side effects are pretty tolerable on G. So domt assume it must be awful. It isn't for many of us. I feel fine most days, have a bout of something annoying for a few days, cramps, spasms or fatigue. I don't like the water bags under my eyes, and I swear it's making me gain weight. But that's it. Not bad at all
Posted 03 February 2012 - 04:45 PM
Everyone responds differently to the meds. Even though some people cannot tolerate the side effects of Gleevec, myself being one of them, that doesn't mean you would have a problem with the drug. For example, I tried Tasigna and the side effects were so bad for me that I could only take it for 6 days and yet you are doing fine with it. Also, as far as insurance goes I have not heard that a lot of ins. companies will not cover Tasigna. If it is the only drug that works for you or that you can tolerate I do think your ins. would pick up the cost. Please try not to worry, easier said than done, but right now we have 3 good options for CML with 2 more on the way this year.
Posted 03 February 2012 - 05:20 PM
I think for me my onc gave me the choice but tried to steer me towards Tasigna. He said he thought if I could tolerate it with it being a second generation drug and me being younger than 40 it would work better for the long run. My only problem is getting it - I finally got a pharmacy set up today that will deliver, no place in town can order it. I've been trying since 1/20 and i'll finally get it tuesday (thank goodness for samples!) I haven't had any major side effects so far and had my first EKG after starting the drug today when I went in for labs. Now is just waiting to see if I'm responding. Novartis seems to be a pretty good company as far as assistance, I joined the MY CML Circle and got a co-pay assistance card which is good for 20 months and will pick up all my co-pay. they also gave me numbers for programs for an oncologist payment assist and a pharmacy payment assist in addition to the card.
Just do what you can to not worry (easier said than done, I know) and take a day at a time, that's what i'm trying to do. I'm just waiting on the day that CML won't be the first thing that crosses my mind when I wake up and the last thing before I fall asleep.
Posted 03 February 2012 - 05:34 PM
Gleevec has been around longer and they know it is pretty safe over long term. Tasigna probably is too, but they don't know for certain until enough time has passed. Gleevec is not that bad for many people and Tasigna can be pretty rough on some people so it really comes down to the drug that works for you. Also keep in mind that Gleevec will be going generic in another couple of years and go from around $5000 per month to about $500 per month, that makes a big difference.
I'm on Gleevec, I work full time, support my family, go to school for my masters degree, I'm a scout leader, take vacations, help my wife care for her sick father, etc, etc, etc. I complain about how Gleevec is a pain, but I don't let it stop me from doing what I have to do.
Posted 04 February 2012 - 07:45 PM
CMLSURVIVOR, My exact thoughts, I have been on G for 6 1/2 years, not going to change just because a new drug is out. If G is working, I'm not going to rock the boat!! Also I know what to expect on Gleevec as far as side effects, of course nobody knows long term outcome, except G has been out longer so it does have more data.
Posted 04 February 2012 - 08:21 PM
In some countries outside of the States, Gleevec is the first option and then if you don't respond or side effects are truly intolerable they will move you on to one of the second generation TKIs.
Posted 04 February 2012 - 08:26 PM
Call Me Lucky.
You summed it up well;
>>I complain about how Gleevec is a pain, but I don't let it stop me from doing what I have to do.<<
If we give in, we let it beat us and rob us of what we have left!!
G 6 1/2 years.
Posted 06 February 2012 - 09:50 PM
I got Tasigna because Novartis was offering 3 months free, and my insurance wouldn't cover TKIs. Otherwise, my first script was for Gleevec.
Posted 07 February 2012 - 12:11 PM
I have wondered the same thing about why arent more people on Tasigna,,,,I feel lucky to have started with it and to have reached CMR so quickly and with very doable side effects. I would guess that alot of docs just go with what they know....
Posted 08 February 2012 - 03:18 AM
Some doctors prescribe Sprycel over Tasigna because it is only once a day and you don't have to worry about taking it on an empty stomach.
One side effect which hit me with Sprycel was pleural effusion. I have been off Sprycel for 2 weeks while the pleural effusion goes away
and I will start Tasigna next week.
Posted 08 February 2012 - 04:22 AM
They are several reasons why tasigna is not always the first choice :
-some people do well on gleevec (good response + limited side effects) so no reason to switch
-there might be some insurance issues in some countries compared with gleevec
-some doctors are more familiar with gleevec which has been tested for about 10 years vs little time for tasigna
-tasigna carries a "black box" of one case of sudden death due to heart failure
-for people with heart issues it may not be the best option
-sprycel is one alternative that is as effective with a different side effects profile which is interesting for some patients
But it remains an excellent drug
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