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.