I am newly diagnosed with CML. I started Gleevec a week ago with no big side effects. I've been doing a lot of reading about advantages of being on other Tkls. So my question is should I be on Tasigna?
Gleevec or Tasigna?
Posted 05 May 2013 - 04:46 PM
Hi: Your only on the Gleevec a week, and doing well. There would be no need to go on one of the other TKI drugs unless the Gleevec did not work for you. Gleevec was the first TKI drug invented, and then the others followed.
I personally am glad that I am taking the Gleevec and its working for me.
You do not switch to another drug, unless you start to see that the one you are on does not work for you.
Watch your blood tests to see how you are responding to the Gleevec, and your doctor will let you know if he sees anything that would require a change. If after a certain period of time they see that your reponse is not where it should be is when a doctor will change to another TKI.
I think I mentioned that all the research and reading can just confuse you in the beginning. One week into your TKI is nothing, it takes time to see how your doing. You should start to see all your numbers coming into the normal range if the TKI is doing its job, among other things that the doctor will look at.
The side effects that I have encountered over the 12 years that I have been on Gleevec has been tolerable for me.
Posted 05 May 2013 - 05:37 PM
Relax because you will get used to all of this. I am still confused at times. We get through it all, and we learn as we go. There is too much to absorb, but I just watch my blood work numbers as I get my blood tests, and as long as everything is stable I am okay.
Posted 05 May 2013 - 08:10 PM
I have been taking Gleevec for 14 months, and I too second-guessed my oncologist for starting me on the weakest/mildest of the three primary CML drugs. The results so far have been quite good, despite a slow response at first, which only added to my worries. My numbers are right where they should be, and my side effects are fairly mild, all things considered. Many oncologists consider Gleevec to be the best option for new CML patients, since the side effects for most patients are usually mild and it has the longest -- thus, arguably the safest -- track record. I would recommend sticking with it until your oncologist has a damn good reason to switch you.
I know it's a bit of an unnatural reaction after a traumatic medical diagnosis, but I would recommend staying away from the online CML sites for the first few months. Let your doctors make the important decisions, and be patient; allow the drugs to do what they're designed to do. Focus on making yourself as healthy as possible: eat a proper diet, cut back on the vices, get a good nights sleep, learn to manage your side effects, drink water, exercise, try to relax, maintain your usual routines, etc. These CML sites only added to my stress during the first few months.
Posted 05 May 2013 - 09:56 PM
Sorry to hear that you are joining us on the TKI trail.
Choosing to start on Gleevec or a 2nd generation drug (tasigna or spycel) is in most cases a decision our doctors make before we've worked out what is going on. Gleevec is still a very good drug, there is more safety data for it and soon it will be cheaper (if you are in a country where this is a problem). What side effects you get is a very personal thing. On average the side effects are fewer on the 2nd generation drugs but a few of the side effects can be quite nasty. On average Tasigna is slightly more effective.
I started treatment in Feb 2011 on Gleevec (600mg) and at that time, in Australia there was no choice other than dosage. I responded very well to Gleevec but I'm now on Tasigna. If I was diagnosed today with the benefit of hindsight and more data on Tasigna I would prefer to start Tasigna. There are two reasons: 1) I experienced many relatively minor but life diminishing side effects on Gleevec, I adapted, most of us do. I got back so much of my life when I moved to Tasigna. I would say never accept a lower quality of life because you're scared to try something different but I'm that kind of person and many are not. 2) Tasigna (& spycel) are more effective. For a while it has been clear that people respond faster to Tasigna than Gleevec but it was not clear if the actual speed of response matters. It is now starting to emerge that it probably matters for only a very very small number of people. Despite what some will say recent research is showing a very small difference in the progression free survival with the 2nd generation drugs: http://bloodjournal....bstract?papetoc This study did not take into account a patients ability to consistently take the drug (treatment interruptions due to side effects, cost, fasting restrictions etc) and this is something that varies widely from person to person. So if somebody does well on gleevec then there can be a good argument to stay on it.
The conclusion from all that is a) you are probably still confused, both gleevec and tasigna are very good drugs, c) you've started on Gleevec, I think it is perfectly reasonable to give it a chance to do it's thing and it's very likely that you will do well on it, particularly if you were dx relatively early in chronic phase, but I'm not a doctor so d) ask your doctor
Btw I'm the opposite from Overcast - reading about CML made me feel happier about the whole situation. We are all so very different!
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 05 May 2013 - 10:36 PM
I have to agree with Jig. This site helped me with my bearing. I was a wreck,didn't know who to talk too, lost needed answers and found out that others was in the same predicament that I was and dialogue about side effects and what others also went through made it much easier to accept my diagnoses. We are different in that respect.
Posted 06 May 2013 - 09:06 AM
There's no right answer to this. If you already started Gleevec then just stay on it and see how you respond, as long as you respond well, then stay with it, if for some reason you are sob-optimal then you can talk to doctor about switching.
Posted 06 May 2013 - 12:52 PM
Agreed with Lucky. When I was diagnosed two+ years ago, I was started on Gleevec 400mg ... but Tasigna would've been a perfectly good option as a first-line treatment too. He said that he selected Gleevec for me because I didn't present with any high risk factors at diagnosis other than high WBC (marrow had 0.2% blasts, spleen was normal, so still very early in Chronic Phase), so it wasn't urgent to get a deep response faster with a newer and more expensive TKI. He felt that a more conservative approach would be safe in my particular situation, and if I didn't respond well, then he'd be able to switch me to Tasigna or Sprycel. It turns out that he was right, because I've entered my 3rd year of Gleevec 400mg and I'm totally healthy and feel fine (big sigh of relief for now <smile>).
For the record, my hematologist has prescribed Tasigna as first-line for other patients that I've spoken to, so he's either rolling the dice or he sees something in the bone marrow biopsy results that helps him decide when to select a more powerful TKI to start. That said, even though Gleevec is the first-generation TKI, it is still very powerful and drives many patients into a deep response quickly!
@Gacham - If you want to learn more or help understand the treatment decision, see if you can get a more detailed explanation of your diagnosis. Other than that, I'd recommend plugging away with Gleevec and see how well you're responding at the 3-month point. That's the first milestone when your onc will measure how much CML is detectable ... if it's decreasing, then you'll be doing just fine. And if not, you can always switch and that will likely do the trick. Stay calm, positive, and know that you have many treatment options at your disposal.
So, I was insanely anxious and panic-stricken at my own diagnosis, and part of that was because of all the research I did on the Internet ... which started on my Wifi iPad while I was sitting in an ER room receiving the shocking news - only a few hours after running a 5K road race I might add. Looking back, if I had started with this forum and interacted with folks here initially, I would've been much calmer and better informed right from the start. I encourage you to engage on here and ask questions; some of the resident experts on this forum know the ins and outs of CML better than many onconologists!
Dan - Atlanta, GA
CML CP Diagnosed March 2011
Posted 07 May 2013 - 02:00 PM
Any TKI drug is a reasonable choice for starting. Gleevec is the #1 CML starting drug and will likely continue to be for a long time.
Posted 07 May 2013 - 02:31 PM
Thank you everyone for answering my questions. I feel so much better with all the information you have shared. I started Gleevec 11 days ago and my WBC has gone from 52 to 23. I have started to get some side effects, puffy eyes and achy muscles. How long does that last?
Posted 07 May 2013 - 04:30 PM
Hi Grace: Personally I have never lost the puffy eyes. You could watch your salt intake,as that helps a little bit.
You will get very achy muscles in the beginning, It gets better with time for most of us.
Thats great that your numbers are coming down. Just post all your questions anytime, and you will start to understand things more as you go along. I sent you a personal message, which might help you with some of this. Check your messages when you get a chance. In case you do not know how to retrieve your messages, just click on your name and go to your profile. Then click on Private Messages at the top.
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