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Do I need change in meds? From Imatinib to Tasigna

Hello, everyone!

I know that here are some very knowledgable and experienced CML-ers. From this forum and CML Facebook group I have learned to always ask questions and be your own advocate. I am at the point I am not fully OK with my doctors recommendation to switch my meds. Below is my story.

I have CML since July 2020. Have been on Imatinib 400mg since then. I am 37. My main side effects apart from chronic fatigue and feeling like an old person in my bones has been problems with ovaries and reproductive system - ovarian cysts (they come and go, sometimes rupture, pain in ovaries, abnormal discharges (not infection, all tests normal) etc.) It started about 2 years into treatment. Have been to gynaecologist about 7 times this year. I got Kyleena coil inserted 5 month ago. It helped with pain tremendously. However, I still had some complaints, therefore, my gyno did hormonal testing which showed that I have very low testosterone and, consequently, low progesterone and estradiol. She prescribed DHEA (it is hormone) which I didn't start to take without haematologist approval. Last week I had my 3 month check up and, considering my low hormones, my haematologist said that she wants me to switch to Tasigna. She said that it was because I am at risk of early menopause and osteoporosis and I need to take that DHEA hormone which cannot be used with Imatinib but can be with Tasigna. I said that I am not ready to switch meds right away and I need to talk to gyno once again to find out if my hormonal problems can't be solved otherwise. Unfortunately, today I had that consultation and she said that there is no other medication, however, she could prescribe the least possible dosage. I am seeing my haematologist next week again in order to finalise this decision.

I am doing my research about Tasigna and I see that women still experience hormonal and other reproductive issues with Tasigna. Not to mention so many other unknowns what happens if I star new meds.

Other big thing - my BCR-ABL have been as follows:
July 2020 - 29%
December 2020 - 0,15%
March 2021 - 0.01%
June 2021 - 0,0045%
September 2021 - 0,0040%
December 2021 and March 2022 - 0,0031%
June 2022/September 2022 and January 2023 - 0,0030%
April 2023 - UNDETECTED
July and October 2023 - back to 0,0030%

Soooo... My haematologist said that I am doing good, however, it could be better, therefore, concerning my side effects, she thinks I could do better on Tasigna. What do you think? I think that my BCR-ABL numbers still are very good and wouldn't be a reason to change anything. I am worried that I lost undetected but I see here that it is not uncommon.

I have million thoughts and questions. I would like to get second opinion from other haematologist, however, in my country it is almost impossible and I need to wait for consultation with other doctor for at least 6 month.

You have had a very fast and deep response, which is great.

Could you consider reducing to 200mg imatinib as per the DESTINY trial in the UK with a view to discontinuation? You may need to hold the 200mg a bit longer than the DESTINY protocol because 5 years+ of treatment has better discontinuation outcomes.

So, imatinib works great but gives you side effects. Reduce the imatinib. See how that goes.


Thank you for your reply! I asked my doctor about possible dose reduction sometimes in the future maybe 9 month ago when I first hit undetected, but she just said that it is not an option right now and my numbers would definitely rise if I did that. I feel like she is very fixated to reaching and holding undetected for at least 2 years for me to have an opportunity to try TFR. But it might not happen so soon. I will definitely bring this up in my next meeting with her.

Hello, I also take Tasigna and I have similar problems with hormones. Tasigna gives you faster TFR capability. I have similar results and I have been undergoing treatment since 2020. I am waiting for your future and I keep my fingers crossed. I did not suspect that CML was responsible for gynecological problems

I am a (very) long term imatinib user. I reduced to 200mg and lost a lot of the adverse side effects (gastric, fluid retention, cramp, eye bleeds etc) but have maintained undetectable. I tried TFR and failed after 17 moinths, went back to 400mg for 12 months, regained undetectable, and reduced again to 200mg. My take is that you have been in MMR for 2.5 years, having had a very fast response to imatinib, and therefore dose reduction might be a good option from that point of view. Don't know anything about the hormonal question I'm afraid. Hope that is of some help.

Hi. Firstly I hope you find what is right for you and between the two departments they can find a solution.

I am very interested in what you have found with regard to Tasigna and hormone levels/gynaecological problems in women as i have not been advised of this at all. I have been on Tasigna for a long time and have no side effects that i am aware of. My haematologist is aware of my hormonal related breast cancer and i was told the CML and the TKI had nothing to do with hormones. I have done a google search and can't find anything online about tasigna side effects relating to female hormones other than birth defects if you get pregnant.

If anyone does have any medical articles etc about this i would be very interested to read them.

Santa, being that you have been at a very low CML level for a prolonged period of time, it is very unlikely that a dosage reduction would have an adverse effect on your CML reading. You have had a great response from Imatinib and your doctor shouldn't be reluctant to lower your dosage to see if that lessens, or perhaps, eliminates, the side-effects you are experiencing. Taking a whole Imatinib 400mg tablet one day, and a half of a 400mg tablet the next day would be a way to achieve an average dosage of Imatinib 300mg. If your CML reading. is not adversely effected as of your next test, then take half of an Imatinib 400mg tablet, effectively 200mg, until the next test. In less than six months you could be on Imatinib 100mg. It's worth a try.

If your doctor was willing to put you on a greatly reduced Tasigna dosage that would be a consideration, but barring that, I wouldn't consider switching TKIs.


Thank you for taking time to reply! Is Tasigna your first TKI? When did problems with hormones started for you, and do you think it could be from Tasigna? Have you talked about it with your consultant/haematologist? As far as I know CML doesn't cause gynaecological problems, it's the TKI's that can give hormonal imbalance and gynecological problems (such as ovarian cysts, ovarian failure, many women experience heavy bleeding (not my case)) as a side effect. There is very little information online about this topic. Even my gynaecologist told me that she couldn't fine anything useful. I suppose she was searching for some information. There is available study online that indicates that Imatinib diminishes ovarian reserve and it affects primary follicle development in ovaries. There is close to nothing about Tasigna. Maybe Tasigna has less influence on hormones, however, from what I see on Facebook CML groups, women who are on Tasigna still experience problems.

Thank you for replying! I have read that side effects are much less with reduced dose. I will speak to my doctor about this. Did you first reach undetectable with 400mg? As I haven't reached stable undetectable with 400mg I wonder would it even be a possibility with reduced dosage someday in the future...

Hi! Thank you for your kind wishes! You are lucky to have no harsh side effects!

Unfortunately, I think we might be reading the same google search results on Tasigna because I haven't found anything reliable. However, I have been researching discussions at Facebook CML UK and Worldwide groups about hormonal imbalance, ovarian, period problems etc. and I have noticed that women on all TKI's experience problems, maybe Imatinib stands out but it might be because it's most widely used? I can find online that Imatinib is being related to diminishing ovarian reserve. There has been some research done on rats not on real females. Even my gynaecologist said that there is nothing helpful on medical research platforms. In my case it's also unknown if my gynaecological problems are solely from hormonal imbalance.

Thank you for taking time to reply! You have all encouraged me to talk to my doctor about possible dose reduction. I wonder why she hasn't offered me this as a possibility... I am actually taking generic version of Imatinib and it comes in 100mg tables, so I take 4 of them at once. It's interesting why i usually see people taking 400mg or 200mg (as a reduced dosage) of Imatinib and very rarely - 300mg. Maybe it's because original Imatinib comes as 400mg tablet?

Concerning Tasigna dosage - i think my doctor mentioned 300mg. But as you take it twice a day maybe it's 300 + 300mg? I am not sure about this, I am seeing my doctor tomorrow again so I will discuss this.

Overall, my gut feeling is that I need to try Imatinib reduction first and if it doesn't work - then switch to Nilotinib. And find another doctor to talk to :)

It is a long time since I first got to undetectable; I think probably just under 2 years, having had a plateau at BCR ABL 0.6% for about 6 months, and suddenly boom!

Santa, based on your lack of a post, I'm assuming that your doctor's appointment didn't go well. Not all doctors believe in dosage reduction and even fewer believe in dosage reduction unless their CML patient has been undetectable for a lengthy period of time.

Please update us on your status.

Thank you,