Is anyone taking Danziten (nilotinib) for CML?

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?

What is it for? I never heard of it.

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

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?

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.

@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.

I am taking Danziten but I have a different issue so I’m not sure if I will be helpful or not. It sounds like you’ve taken tasigna or the generic nilotinib maybe. Have you?
I just started Danziten but it’s been about two weeks now and I feel horrible. Horrible headaches. I’m so tired. I can barely function and my muscles hurt all over. If I lift something that literally weighs 5 pounds the next day my muscles are so sore like your muscles would be if you did a new intense workout that your body isn’t used to. The problem is I was on tasigna and I was not very compliant a lot of times because of the fasting restrictions so then when I learned about Danziten I immediately wanted to switch. I am on the proper dose conversion. Which is 190mg Danziten as I was on 400mg tasigna. And they say the side effect profile is the same so this doesn’t make sense. I think the hard part is as we know Medicine unfortunately a lot of times tend to treat. Everybody textbook and people are not the same and unfortunately Danziten hasn’t been around very long so there aren’t a ton of studies, but I am wondering if there is a possibility that I am absorbing this medication much better and maybe need a lower dose. I did really well on nilotinib and was even in MMR for several years until I became non compliant because I’m sick of the fasting nonsense so I was obviously absorbing the medication OK but I’m just wondering if it’s possible the equivalences aren’t equivalent for me because I don’t understand why I would be having these bad side effects to Danziten that weren’t this bad on tasigna.
The other thing I will know is that I have been completely off of my medication for a couple of months because of this new horrible pharmacy, benefits manager that refused to approve the medication stating that it wasn’t medically necessary but anywho I came completely out of remission, even on a hematology level. My CBC and platelets, everything are elevated. However, I went off of my tasigna for 9 months to have a baby and when I went back on it I wasn’t this sick with this bad side effects after having a much longer medication break

@kristanm07 I’m sorry to hear you’re having side effects with the Danziten. Have you talked to your oncologist about what you’re experiencing? Since you had positive results with Tasigna, would you consider returning to that drug?