TKI vs Hydroxyurea

Hi @mjbulte Changing meds can be a little unsettling. It’s that fear of the unknown. Been there myself. But the goal is to get the most effective treatment for our conditions.
If I remember correctly you were diagnosed with CML. From my understanding hydroxyurea may be used initially for more of a pre-treatment of CML to lower white blood cells rapidly in newly diagnosed CML patients. Then they are often switched to a targeted medication (TKI). A targeted therapy identifies and attacks specific types of cancer cells while causing less damage to normal cells. Where HU is not a specifically targeted drug.

I found two articles for you that will hopefully shed some light on the med changes and help you relax a little with the decision your doctor is offering with the treatment plan going forward.

Both from the Leukemia/Lymphoma Society:
~Hydroxyurea for pre-treatment of CML
https://www.lls.org/leukemia/chronic-myeloid-leukemia/treatment/lowering-high-white-blood-cell-counts
~TKI treatments!
https://www.lls.org/leukemia/chronic-myeloid-leukemia/treatment/tyrosine-kinase-inhibitor-tki-therapy
Has your doctor discussed specific options with you?

I can’t find my original post so starting a new one.
CML diagnosed after CBC, echocardiogram, and bone marrow biopsy. Have been on Hydroxyurea since July 5. Will be changing to Tsinga after insurance approval. In order to manage possible side effects of TKI, will be using a bit unconventional method of dosing and monitoring very diligently. Please share experiences of changing from Hydroxyurea to TKI. Which TKI did you take? What side effects? Dose? How long to achieve remission?

Hi @mjbulte. It can be a little confusing finding an original post if you’re new. An easy way is to click on the little avatar (the little silhouette on the upper left of the page) OR in the upper right corner there a little symbol of a person. Either way will take you to your profile page. Once there, you’ll see a menu on the left side of the page for Discussions, Comments, Reactions or Book Marks. Look in either discussions or comments for entries you’ve made.

Your original post is here:
TKI vs Hydroxyurea.
https://connect.mayoclinic.org/discussion/tki-vs-hydroxyurea/
I’d responded to you earlier with this message about TKI vs Hydroxyurea. which I hope will be helpful for you:
https://connect.mayoclinic.org/comment/1358279/
Changing meds can be unnerving as you enter new territory of treatment. But for CML, as mentioned in my earlier reply, from my understanding HU is initially given only to reduce the high white blood cell count until there is a firm diagnosis of CML. Then treatment is switched to one that is more targeted to your condition while HU isn’t a targeted treatment. Read through my initial response where you’ll see informational links I’ve posted for you.

It’s wise any time we’re on medication to monitor and note any changes. So you’re already ahead of the game in having a good strategy for the future. I’m hoping you’ll find that this new medication will help you without any side effects except to keep the CML under control. Has your doctor discussed any specific TKI for you?

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.

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/
~~~
@ortina2023
https://connect.mayoclinic.org/comment/1306395/
~~~
@divermom https://connect.mayoclinic.org/comment/1335953/
~~~
@talmadge81
https://connect.mayoclinic.org/discussion/talmadge81/
~~~
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?

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.

Thank you, Ortina2023! Appreciate your feedback on Tasinga.
My doctor is now recommending Danziten, a newer formula of Tasinga that doesn’t require fasting before/after and is taken in smaller doses.
Has anyone had experience with Danziten?

@loribmt - Are you familiar with Danziten? If approved by insurance, I will start taking it. I asked my Hematologist to consult with my Cardiologist to ensure there are no concerns before starting it since I have a history of afib with ablations.

Hi @mjbulte. I don’t have any personal experience with Danziten but a little sleuthing this morning shows it’s a revised version of Nilotinib (Tasinga) which you mentioned.

Here’s the briefing from Azurity Pharmaceuticals:
https://azurity.com/azurity-pharmaceuticals-inc-announces-fda-approval-of-danziten-nilotinib-tablets-the-first-and-only-nilotinib-with-no-mealtime-restrictions/
I haven’t found any members specifically mentioning Danziten yet. But since it’s a relatively new drug on the market it may take a little time for more replies to trickle in.
Fingers crossed for the drug approval! In the meantime, are you still taking the HU?

Yes i am still taking HU. When I switch to Danziten, I will reduce HU to one capsule a day for up to 7 days and then only take Danziten. I know it’s a very new medication but would like to hear from anyone taking it. Maybe start a new thread?