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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,

Hi, David! Thank you for your reply. I haven't been here for a while and have not shared any updates. I managed to see another haematologist (In my neighbour country! Yeas, you read it right :)) and she strongly advised not to change meds. She also didn't see problems with taking hormones with Imatinib as long as interaction is minor. My gynaecologist also changed her opinion and suggested to just give more time for my new IUD to balance hormones, and I ended up with changing nothing. Needless to say that this situation seriously undermined my trust in the competence of my haematologist.

Since then BCR-ABL in January and now a few days ago (April) were still 0,003. Unfortunately, my "female problems" did not resolve with IUD and I am now in the process of deciding next steps which includes taking out my current IUD.

Concerning Imatinib dose reduction - both haematologists I have talked to (mine and the one from neighbour country) were strongly against reducing the dosage. They did not give me comprehensive explanation - just that "you can't because your numbers will go up". Is there any information, research etc. that covers successful dose reduction as possibility for patients with strong side effects? I also have no idea where I stand concerning future TFR possibilities. My doctor has never mentioned it because i do not have "undetected". I really don't understand how it's possible that I had very fast and deep response from Imatinib but I can't get lower that 0,003 already for 2 years. I had one "undetected" but I have been back to 0,003 for a year. I think that one undetected might be a mistake or something like that.

A good place to get more information on dose reduction is this video entitled "Reducing or stopping treatment - who and when?" It is a 2019 video from the patient day in Leeds; the presenter is Prof Richard Clarke from Liverpool who was the research lead on Destiny but has now retired. see

I hope that's useful

Santa - Regarding CML, you are in a very good place as you know. Imatinib is a dose dependent drug in which more works better up to the point of toxicity. But finding what an optimum dose which can keep you at your current level (or better) is individual. Some patients need higher dose, some lower for a given response.

You can certainly try dose reduction. CML is a very slow disease when in MMR. If your numbers go up, you can revert back to your current dose (or even switch drugs) and will very likely regain your current status. This has been shown many times in trials. And given your CML sensitivity to imatinib, will work for you as well. In other words, there is little risk (zero in my opinion) in trying.

Tasigna works the same way, in terms of biochemistry, as imatinib - just tighter binding on the ATP site (which shuts down CML). Switching to tasigna is not likely to have any change on your hormone interaction issues, but tasigna could give you a deeper CML response.

An alternative is to switch to low dose dasatinib (20 mg). The short half-life of dasatinib (and lower dose) along with its different biochemistry (attack on CML) is likely to wipe out your residual CML cells which have been somewhat resistant to imatinib and enable you to take hormones for your other issue. Again, if your CML rises, you can always revert back to regular dose imatinib and regain response. But I do not think that will happen. Rotating TKI drugs in order to achieve deep molecular response has clinical data behind it ( In fact, the very different biochemistry between imatinib and dasatnib is a one-two punch against CML. The low starting dose, however, is not protocol and most doctors won't prescribe it. It worked in my case brilliantly because my doctor is a lead researcher who writes the protocols.

As I read your posts, you are uncomfortable switching drugs, which I understand, but the risk is low and the benefit could be enormous in your case. At a minimum lowering your current imatinib dose to "test" response can be done safely. This is just my opinion. You will do what makes you feel most comfortable. But as others have pointed out, your doctors are not necessarily experts in all that you can consider. It is safer for them to just follow existing protocol - until the protocol changes.

Thank you! I hadn't noticed this video, will watch it right away!

Thank you so much for such an extended response! When I did my research about Tasigna, I came to the conclusion that it could possibly get me to "undetected" better than Imatinib and carries a chance to at least not worsen my hormonal problems, however, I also found out that Tasigna is not recommended for people with Gilbert's Syndrome (which I have, and my doctor knows about it). Besides that I also started to experience gallbladder issues and in February found out I have small gallstone or small polyp (was not reliably visualised in abdominal ultrasound, therefore, my doctor sends me to do abdominal CT (which is another issue for me because I hate radiation and have had a fair share of it before CML). Even though my symptoms are gone (but reappears even if I take certain vitamins), my lipase levels have been slightly elevated since January. So I have another problem to solve and Tasigna is off the table. Concerning its effects to reproductive system - several women did reply to my Facebook post about Imatinib vs Tasigna effects to female issues, and, unfortunately, one case was similar to mine where woman experienced ovarian cysts and other problems with Imatinib, was changed to Tasigna and got extreme monthly bleeding etc. instead. There were others who said that they have problems on Tasigna. So I think if my "achilles heel" with TKI is reproductive organs, there is a great possibility that all of them hits me right there. Or not. I don't know.

My haematologist have mentioned Sprycel as a possibility. I will dive into article you posted. I have read your story here and experience with lower dose Dasatinib. I have noticed that many suffers with pleural effusions from it, i find it very concerning. I definitely have a lot of research and self-educating to do before I present my doctor such an idea, because she is strictly protocol following type of person.

Oh, one more thing I don't really understand - how long do we wait for Imatinib to possibly get someone (in this case - me :)) to undetected? Is there such a time frame? I have seen here and Facebook very different stories - there are people who say they have never been undetected many years into treatment and some who very purposefully pursues undetected even changing TKI's in order to achieve it. My "second opinion" haematologist also told me to hold on to Imatinib while I can because of my deep response.

In conclusion, for those who are interested - my gynaecologist came up with different treatment plan for my issues today. IUD is coming out asap and I will be taking another form of hormones. Let's hope it works.

I hope the video will help. I just re-read this thread; the fact that both the doctors have said dose reduction is not an option says to me that they are likely not CML specialists; they are probably haematologists who deal with CML patients. Many people have found that if their case is at all non-standard (as yours is) that they need to get access to a national centre of excellence in CML to get the right advce. For the UK these are listed under the patient info tab above. Many members of this forum have been through this, and members of the forum are quite often more current in their understanding than a haematologist who only deals with a few CML patients among a wide range of other conditions.

I am from one of the Baltic countries. We only have like 5 haematologists in total. None of them is specialised in CML. But they all have CML patients. I know that my doctor is very respectable and good specialist (and also the head of the chemotherapy department at state oncology hospital), however, during one conversation she replied "you read too much" to my questions. However, the second doctor that I went to visit in neighbour country is supposedly CML specialist. But as I already told, she was also against dose reduction. When I desperately looked for second opinion, I dug all the internet searching for online consultation possibilities with CML specialists abroad, especially from UK, however, I couldn't find such possibility. If anyone knows how do I arrange one, let me know. Luckily, hospital in neighbour country deals with international patients and they did reply to my e-mail, therefore I did get that consultation in the end.

Alistair is absolutely correct regarding CML treatment specialists/researchers vs primary care hematologists and their knowledge levels.
It is good that you read (contrary to your doctor's recommendation). Show the article linked below, written by an expert in the field, to help educate your doctor so together you can plan your treatment. If she does not want to "learn", you should find another doctor.

Just to add my 2 cents. I agree with others in saying you are in great shape with a swift response to Imatinib. I never got to CMR on 11 years of Imatinib. When I switched to Nilotinib I got to CMR within 9 months. In my opinion I would try dose reduction first and if that fails then you have great options of either retuning to former dose or switching to Nilotinib. To me it’s all about side effects. I personally think the side effects of Imatinib are harsher than Nilotinib. But there are side effects to Nilotinib that can be very serious. You may want to focus on staying in CMR for 3 years and then give TFR a try. You may be a good candidate for a lasting TFR response. Focus on healthy habits and strengthening your immune system. Finally, be careful with taking other substances to counter act another. It can be a rabbit hole of adverse affects. Your body is trying to deal with this issue and adding more things to the mix can make it harder to find balance. Despite your set backs you are in a generally enviable position regarding treatment. Many people can only dream of reaching CMR. Good luck!