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Is anyone taking Danziten (nilotinib) for CML?

Posted by mjbulte @mjbulte, Aug 6 11:27am

Preparing to start Danziten for newly diagnosed Philadelphia Chromosome positive CML. I would like to hear from people taking Danziten to learn how it’s working for you and side effects.

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mjbulte | @mjbulte | Aug 25 7:31am

I was recently diagnosed with CML. I have been taking Hydroxyurea 1000 mg daily. My white blood count is now normal (8.0) and platelet count has dropped to 600,00 from over 1.6 million. My hematologist has decreased Hydroxyurea to 500mg 2x a week and 1000 Hydroxyurea 5x a week. Switching to Danziten is planned in the next few months. If anyone is taking Danziten I’d like to know what side effects they have, how quickly were the side effects felt, and how are you handling them?

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eloise999 | @eloise999 | Aug 26 10:36am
In reply to @mjbulte "I was recently diagnosed with CML. I have been taking Hydroxyurea 1000 mg daily. My white..." + (show)
Profile picture for mjbulte @mjbulte

I was recently diagnosed with CML. I have been taking Hydroxyurea 1000 mg daily. My white blood count is now normal (8.0) and platelet count has dropped to 600,00 from over 1.6 million. My hematologist has decreased Hydroxyurea to 500mg 2x a week and 1000 Hydroxyurea 5x a week. Switching to Danziten is planned in the next few months. If anyone is taking Danziten I’d like to know what side effects they have, how quickly were the side effects felt, and how are you handling them?

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What is it for? I never heard of it.

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mjbulte | @mjbulte | Aug 26 2:24pm
In reply to @mjbulte "I was recently diagnosed with CML. I have been taking Hydroxyurea 1000 mg daily. My white..." + (show)
Profile picture for mjbulte @mjbulte

I was recently diagnosed with CML. I have been taking Hydroxyurea 1000 mg daily. My white blood count is now normal (8.0) and platelet count has dropped to 600,00 from over 1.6 million. My hematologist has decreased Hydroxyurea to 500mg 2x a week and 1000 Hydroxyurea 5x a week. Switching to Danziten is planned in the next few months. If anyone is taking Danziten I’d like to know what side effects they have, how quickly were the side effects felt, and how are you handling them?

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It is a TKI. The newest version of Tasinga to treat CML

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 29 9:14am

That's right. Danziten (nilotinib tablets) has the same effectiveness as Tasigna (nilotinib capsules), but without mealtime restrictions, offering convenience over Tasigna, which requires fasting. Nilotinib (Danziten) was recently approved for Ph-positive CML. Read more here: https://www.onclive.com/view/fda-approves-nilotinib-tablets-without-mealtime-restrictions-for-cml

Related discussion:
- TKI vs Hydroxyurea https://connect.mayoclinic.org/discussion/tki-vs-hydroxyurea/

@mjbulte, when will you be starting the new treatment?

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swescott | @swescott | Oct 28 7:08pm

I was diagnosed with CML almost 2 yrs ago. I did the hydroxyurea to start and was put on Spycel. Sprycel got my BCR levels down fast. After a yr of almost zero side effects, it made me bedridden sick. I was switched to Tasigna. Almost immediate immediately I developed severe rashes. My skin itched so bad I could not sleep at night. I developed a phototoxic reaction to sunlight. The reaction is instantaneous when exposed. I get instant pain, tingling and burning. My skin turns bright red and swells. I was switched to Bosutinib after 2.5 months, but the condition is still there. I cannot go out side without 100% coverage and a mask as sunblock does not help. I live in Az. My Dr says it’s not from the meds. I do not take any other medications. He completely dismisses any correlation to the tki treatment. I have been dealing with this for 7 months now. I am no longer concerned with cml. I can’t live with not being able to be in sunlight.

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mjbulte | @mjbulte | Oct 28 7:49pm
In reply to @swescott "I was diagnosed with CML almost 2 yrs ago. I did the hydroxyurea to start and..." + (show)
Profile picture for swescott @swescott

I was diagnosed with CML almost 2 yrs ago. I did the hydroxyurea to start and was put on Spycel. Sprycel got my BCR levels down fast. After a yr of almost zero side effects, it made me bedridden sick. I was switched to Tasigna. Almost immediate immediately I developed severe rashes. My skin itched so bad I could not sleep at night. I developed a phototoxic reaction to sunlight. The reaction is instantaneous when exposed. I get instant pain, tingling and burning. My skin turns bright red and swells. I was switched to Bosutinib after 2.5 months, but the condition is still there. I cannot go out side without 100% coverage and a mask as sunblock does not help. I live in Az. My Dr says it’s not from the meds. I do not take any other medications. He completely dismisses any correlation to the tki treatment. I have been dealing with this for 7 months now. I am no longer concerned with cml. I can’t live with not being able to be in sunlight.

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@swescott
I am so sorry you are having such a difficult time with Tasinga. I also live in AZ and do water aerobics every morning. Wearing a swim shirt and using sunscreen helps a lot. So far I haven’t had any serious reactions to Danziten for which I’m extremely grateful. Since your Oncologist dismisses your skin issues as not related to your TKI, you might consider getting a second opinion from another Hematology Oncologist.

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