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Hi Lori! Thank you for the info you sent to me earlier. My Hematologist has discussed all the TKI meds with me and has indicated his prefers to prescribe Tasinga. He covered all the potential side effects and together we laid out a strategy for making the change from Hydroxyurea to Tasinga. I’ve read patient reviews of Tasinga and it seems there’s a lot of side effects. I do tend to think people are more prone to posting reviews when they’ve had side effects. I’d love to hear from people who haven’t had side effects.
Replies to "Hi Lori! Thank you for the info you sent to me earlier. My Hematologist has discussed..."
Hi @mjbulte, I’ve been taking Tasigna now for about 1 and 3/4 years for my CML, and have had a great response with very minimal side effects like some dry skin and a light rash in the beginning. I think it was the Hydroxy that caused some hair thinning, not the Tasigna, but I never lost enough for anyone but me to notice.
This medication has worked wonders for me! My blood work is very good now and the BCR (cancer) levels are now considered “undetectable”. I am in remission!
I started on Hydroxyurea in the beginning to get my very high platelet numbers down, then switched to Tasigna, 300 mg twice a day about 12 hours apart. There are specific rules about taking it on an empty stomach which must be followed but it’s fairly easy to figure out a schedule that fits into your routine. No food for two hours before dosing and one hour after. The alarm on my watch gets a lot of use!
Good luck with your treatment. Please check back and let us know how it’s working for you.
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Now that I know the name of the medication your doctor is suggesting, I was able to search for references to Tasinga (Nilotinib) by using the upper search bar.
Here are the results for you:
~ Tasinga
https://connect.mayoclinic.org/search/?search=Tasinga
~Nilotinib
https://connect.mayoclinic.org/search/?search=Nilotinib
I’ve posted a few of the relevant links for you below, (with the member tagged for reference) but many more comments or discussions can be found by referring back to the search results.
@garthc
https://connect.mayoclinic.org/discussion/side-effects-of-nilotinib-tasigna-muscle-pain-and-injury/
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@ortina2023
https://connect.mayoclinic.org/comment/1306395/
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@divermom https://connect.mayoclinic.org/comment/1335953/
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@talmadge81
https://connect.mayoclinic.org/discussion/talmadge81/
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As you read along, feel free to pop into any of the conversations. You can always tag members by putting in their @name…make sure to include the @ sign.
Wishing you well as you begin treatment, whatever you decide. You mentioned you and your doctor had a good discussion about the medication/risks/rewards. Since there are several TKIs, did he explain why Tasinga was his first choice?