4 replies to this topic

[Marathon]

Hi Everybody

I am new to this discussion board. I have been reading and reading for the past days and have also dared to post a couple of comments to give people my insight with the idea of helping.

My details: CML dx 9 months ago, Glvc 400 mgs, mild side effects. So far all is going well as regards indicators.

I see so much around on Glvc, Tasigna, Sprycel and some of the new approved drugs that I wonder whether the best thing to start with is Glvc or go straight to the other 2 major drugs.

I was told by my doctor that if Glvc was working fine, I would stick to that. As for the future, there is always time to consider other drugs.

Would it be fine to say that Glvc is the preferred initial treatment and that if things start to go in the wrong direction, then it is time to consider other options?

The more historical perspective  we have on the drugs could be changing this approach?

Are newly diagnosed patients in top medical institutions being given Tasigna/Spricel as first line treatment?

Does anybody know studies that may be suggesting that is better to start with other drugs but Glvc?

Would like to end this first message with a message of support for everybody suffering CML. Although I am new to this I have found support in many of the messages I have read. In difficult times, people get closer and supportive. And this is good. Some people gather together because they like biking or trainspotting or traveling or playing Wii or collecting stamps........... we meet here because we have something in common and we want to feel better. I hope to be able to help everybody that needs and also to get some help from you.

Enjoy

[Tedsey]

Gleevec is an excellent drug that works extremely well for many people.  Gleevec also has the longest "history", but none of the TKIs have been out long enough to have a real history.  Therefore, I believe Gleevec is a very good drug to start.  And sadly, there is no available test to see which TKI is best for an individual.  If there were such a test, we could all be put on that drug and at our optimal dose.

I would like to believe the drug companies are above board with their research.  Accordingly, there is some support that Sprycel and Tasigna bring many patients a quicker and deeper response.  However, these two drugs do not do that for everyone.  Moreover, some people meet the milestones relatively quickly (or steadily) on Gleevec.  I hope that most oncs are on the level and not influenced by drug companies, but sadly some are.  I believe this is part of the reason some doctors choose to put their patients on Sprycel and Tasigna first.  Others may be swayed by the data.  All in all, it is whatever works and with tolerable side effects, (and some people claim they have no side effects on some of the TKIs).  There are some side effects with TKIs that some people cannot tolerate.  And as you know, regarding all TKIs, some people get a poor response with one or another.  It is good that there are choices out there and that some of the newer drugs have put the breaks on CML progressing. 

If you feel decent on Gleevec, and it appears to be working well, there is no need to change to a different drug.  I can understand why you would ponder this issue.  For example, I did not get a good response on Gleevec.  I became severely anemic, dangerously low white blood cells, and started bleeding heavily.  I chose to switch to Sprycel because it was most unlike Gleevec (plus you didn't have to take it twice daily).  Luckily, I got a better response and the anemia, et al. improved.  Nevertheless, I have not had a "miracle" response on Sprycel.  But if it keeps the CML from progressing the rest of my life, I will consider it a miracle response.  So, in my case, a change was called for.

Hang in there.  If you are feeling relatively well, see how the Gleevec plays out.  If for some reason you cannot tolerate it or are getting a very sluggish or, (God forbid), lose response, you can always change drugs.  Thank goodness we have such choices.  And I think Gleevec is a very reasonable place to start treatment.

Take care,

Tedsey

[Marathon]

Tedsey

Thanks for your comments.

You are very right on your remarks and you have hit an important point on doctors being influenced by the pharmaceutical companies. Seems to me that after some research over the web, that all of a sudden Glvc is like a bit outdated and Tas/Spry the new drugs to consider.............. how much of this because the patent expiring soon though?

This is another important issue: are generic exactly the same as the branded drugs? I know some people that they complain that the generic medicines are not 100% the same or at least that their body does not feel they are. I am talking on basic medicines such as pain killers. In my country, having medicines widely subsidized, we have started seeing how doctors prescribe the drug itself and pharmacies are more and more obliged to give you only the cheapest version (generic).

Have a good day.

[Trey]

Overall there is no right answer.  All the drugs are good drugs.  There are two overall issues to consider regarding these TKI drugs, namely response and side effects profile.  Here are two posts which discuss these issues, however we are each different, so response and side effects are different for each of us.  When Gleevec becomes Generic in 2015, cost will become a third issue to consider at that time. 

Response rates:

http://community.lls.org/thread/11781

Side effects profiles:

http://community.lls.org/thread/18716

Bosulif (Bosutinib) is also now available and has a profile somewhat  similar to Sprycel.

[Marathon]

Trey

Thanks for your answer.

A quick look at both posts tells me I am going to be busy for the next days looking at it in detail.

Extremely interesting for my question.

Thanks again.