Hello everyone, my name is Ana and 5 months ago I went for a full health check up and I came out with a diagnosis of Chronic myeloid leukaemia . Like most of you I didnt feel myself for over a year but it was put down to being in the peri menopause, hypermobility and fibromyalgia … I felt so unwell and nobody seemed to understand me to the point I stoped complaining and tried the best to get on with my life .I suppose because Im a positive and happy go girl no one took me serious !
I started treatment with Imatinib 3 weeks after my biopsy and blood tests and have been on for 5 months . I dont want to stop it but the side effects are so unpleasant that I am considering changing to a different drug . Has anyone had bad side effects while on Imatinib ? All the research shows that its a well tolerated drug but I just feel awfull .completely exhausted and nauseous every day .Ive got good days ,I mean good hours ,but in generall feel very down .
Anyway wishing you all a wonderful day !
Hi Ana, a very warm welcome to the forum, and thank you for sharing this with us. I’m so sorry to hear how poorly you’ve been feeling. It sounds like it’s been a really tough time for you, and understandably so. Would you find it helpful to speak with our Support Team? We are on 0808 2080 888 or support@bloodcancer.org.uk. Please do let us know if we can support you at all.
May I ask, Ana, whether your haematology team know how you’ve been feeling? We’d encourage you to let them know about the side effects you’re experiencing, and the impact it’s been having on you. This is so you can get the right support- as you say they may want to change your medication, but they can also consider if there’s anything else they need to do, such as blood tests.
It’s only normal to feel down when not well. Please do let us know if you’d like to talk things through. It may be useful for your team to know about this, too- some people find it helpful to get psychological support, and your team(/GP) may be able to connect you to this if you’d like. We can also talk that through with you if that’d be useful.
Take good care, Ana, and do remember that we are here for you.
Best wishes,
Tanya.
Hi @Ana2023 a great big welcome to our forum and @TanyaBloodCancerUK has given you a good response which I will not duplicate.
I expect your diagnosis came as a great shock and my emotions and thoughts were all over the place.
I was in shock, anxious and fearful but also somehow glad that I at least had a diagnosis and I wasn’t going mad or making a fuss over nothing, oh, and I wanted to shout from the roof tops that I told you something was wrong with me.
I also believe in telling my specialist nurse or medical team if I am feeling any different, have side effects and their severity etc and see what they suggest.
If you feel unwell and have symptoms in my experience I will feel very down.
The main thing is to really look after yourself and be kind to yourself.
Please keep posting.