Hello, have been on your forum since 2013, when I got diagnosed with CML. 39 years old woman with 2 children, the sentence of the CML was very scaring. But Everything went well from the start on, almost 3 moth later I responded and i' m now under the 0.1% PCR since then. I'm on Tasigna, it was suggested as a first-line Therapy in Singapore. Tasgina has worked well and I have almost no side effects. But the taking of this drug is not easy. When I started I used to take it at 6am and at 6pm but this created reflux issues.I changed it to 10am and 10pm. It is a lot better. But i can't fast all the time and I feel guilty when I have a chocolate between 8pm-10Pm.
I got two questions, would it make sense to change to Spycel? Has anyone change for the same reason? What are the risks? my husband is against it, he thinks that I risk to have less choices if there is a mutation. Also, has anyone any date about changing from Tasigna to Gleevec. My doctor thinks that the longterm risk of Tasigna for heart disease are quite high, And there is a big chance that I will take this medication my entire life (still hoping to get on some trials to stop). He prefers Imatinib (gleevec), but told me there is no date to change from nilotinib to imatinib. Thank you
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Change from Tasigna
Hello,
I'm 37 and have been on Tasigna for 4.5 years now. My personal advice, which has been typically supported by my doctor, is to stick with Tasigna unless you really need to change. Although our TKI options are growing there is still a finite number available to treat CML. I have had some minor ups and downs on Tasigna, but I have a very tolerable side effects profile and a satisfactory response. I would therefore suggest you don't change to Sprycel unless you lost response and/or had intolerable side effects from Tasigna.
Gleevec is Tasigna's big brother and targets similar pathways to Tasigna (Sprycel targets different pathways). You potentially could change to Gleevec, but studies have shown an improved response on Tasigna and there is typically a reduced side effects profile (I know lots of people who are fine on Gleevec, but it does seem to produce more issues). Gleevec has a solid history and, as far as I'm aware, has not raised any heart issue flags. Lifetsyle will have a big impact on heart health and my view is that I won't be on Tasigna for life (fingers crossed). I'm willing to to accept a level of risk to my heart while on a drug that works well for me.
Personal choice, but I'm in similar circumstances and the choice i made is to stick unless i have to change.
Good luck with whatever you choose.
Chris
. Thank you Chris. This helps me to reconsider. I know that we are very lucky to have this drugs and if there was no other options, I wouldn't even considere a second to change. Have you heard about peopl that downgrad from Tasigna to gleevec? Is it risky, besides the side effects? My doctor said there is no data and he is very fan of gleevec. Thank you again for you quick respond, this forum has help me so much already