I was diagnosed with Chronic myeloid leukaemia aged 39 in Aug 2022. I have been on IMATINIB since then. After having 6-8 months of lots of side effects, then off and on for around a year I have recently have had 6 months side effect free. Unfortunately recently some side effects have returned. Joint pain, fatigue, dizziness, brain fog which has brought my anxiety through the roof.
I’ve had a series of blood tests done on Friday and await the result of these. The expectation from the hospital is that all is well, however I don’t think I can cope with these side effects again. My real question is anyone with Chronic myeloid leukaemia explored the option of changing meds? This option was gave to me around 18mths ago, however I declined as my blood work was good and didn’t want to chance taking something that my illness rejects. Any and all help will be greatly appreciated. Steve
Hi @Steveg26 it is great that you have found us.
I will copy you the Blood Cancer UK treatments and side effects. CML treatment and side effects | Blood Cancer UK
I reckon it is always a difficult problem when the medication is working, but you have side effects.
However you were given the option of changing meds 18 mths ago, so perhaps why not explore the options, you do not have to make a decision there and then, you can get back to your medical team when you feel ready to make a decision.
Perhaps go through each option and ask them straight what the pros and cons are and what are the potential side effects.
What I have learnt is that we are all unique individuals, there is no one size fits all and treatment would be tailored to each person and perhaps people react differently as well.
I hope others will be able to share their own experiences for you.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Be very kind to yourself anxiety and the symptoms you describe must be draining.
Please do let us know how you get on
Hi Steve, im new to the forum as well, ive found it really useful, informative and friendly. I was diagnosed with Chronic myeloid leukaemia in June last year, and am on Imatinib. Ive been generally ok, but my main side effect is really bad skin problems, dry itchy skin, discoid eczema, etc etc. Just before i saw your email i had my 2 monthly telephone appt with my Consultant, my latest results are ok in most areas, but he has , and now is, going to change my medication to try and alleviate my skin stuff, and wants me to have a break from Imatinib from today. So it does happen, i wasnt expecting it, but im so grateful for his continued care, but apprehensive of course. I will keep in touch with you, dont worry, theres so much help and support around for you, but i know how daunting it all is! Very best wishes, Manda
Hi, i was diagnosed with Chronic myeloid leukaemia in September and started on Imatinib. Had a range of side effects, cramps, fatigue etc but could cope with those . However in November i developed a skin rash over most of my body and this became worse despite using steroid creams etc. My hands and feet were particularly bad to the point that eventually i was taken off Imatanib in December despite blood test results being good. I have been on Dasatanib for 2 weeks now after a 3 week period to let the skin issues settle. Had headaches for a week or so but these have settled . Concerned all the time the rash will return as still have slight itching but so far things are ok , hope it stays that way !
Hi Nick, yes im in exactly the same position, skin rash absolutely everywhere, really sore ’ papercuts ’ on my eyelids, tried every cream available. Very unexpectantly as of yesterday, im off Imatinib for 2 weeks, before starting a new med, would be interesting to keep in touch , if my skin issues dont resolve its obviously not Imatinib. I really hope you settle and continue to improve. Very best wishes.
Hi, your skin issues sound very similar to mine and only coming off Imatanib sorted mine out so hopefully that will be the same for you. I had papercuts but on my hands and particularly fingertips. Once off Imatanib a steroid cream did clear it up although I still itch a bit but so far no rash on the Dasatanib but its early days . Hope things sort themselves out for you .
A great big welcome @NickC and you have shown how our forum works and you and @Tabby7L have found each other having both had similar experiences.
Perhaps even a 3 week period appears to me (I am not a medical person) quite a short time for such severe symptoms to completely clear up.
Please do keep posting how you are doing both of you.
Look after and be kind to yourselves
Hi, my name is Liza, i have been a member of the website for a while now. I was diagnosed with Chronic myeloid leukaemia in May 2021, and i can still remember like it was yesterday, how my world slowly came to a completely stop. I was a very busy bee, had a very fast stressful job, and lifestyle. So learning to cope with side effects from medication, came as real big shock to me. I was put on Immatinib as well, and the side effects hit big time, i wasnt sure what was happening, but all I knew is that my body and mind wasnt no way near the same as b4. I really struggled for months although Immatinib was brilliant med getting me on remission almost instantly, it caused alot of side effects. I went into menopause, and headaches. The only way way i can put it, is like it felt like my body and mind was changed for a completely different person. My body became very sensitive to weather conditions, pain in my articulations became pretty hard to cope, alond with the numbness on my fingers, joints. Although my Heamatologist was very understanding and sympathetic, she couldn’t understand the reason why i was in so much disconfort. After 9 months, i developed blisters in my tongue, and was quite uncomfortable, so I decided to keep pushing for more investigations, they did, and it came about that the medication was affecting my liver functions. I had to stop taking medication, while my liver healed, then i was put on a different medication called Dasatinib. I am currently taking this medication on a 100mg tablet daily, although its been miles better than the previous one, i still experience like swelling on my joints, anxiety and brain fog, but i have buid a coping mechanism to help me get through. I have changed my life style and diet. I am currently on negative response, and we are trying a lower dosage of 50mg for few weeks, and see if that helps reduce the side effects. After, will go back on full dosage. Keep trying and keep talking to your heamatologist about how you feel, as they are very good and supportive, once they know how you are feeling. I personally do daily meditacion, to help me with the anxiety part, and I take few herbal teas to help me with drainage of fluis. I usually ask my medical team about all the herbal suff i take, and the vitamins i take, just to be sure. Keep strong, take a pause to understand your personal circumstances, your body response, and knowing how to cope, this will help take away the fear of the illness, help you to become stronger and help you cope better
Hi @liza thanks so much for writing such a comprehensive post and also updating us.
Really look after yourself and yes, we need to keep talking to our medical teams otherwise they do not realise what we are going through and therefore cannot help us.
Keep posting
Hi Steve, I was only diagnosed in September last year with Chronic myeloid leukaemia and put on Imatanib. I experienced side effects from the outset which i could cope with and my blood results were good. However I developed an allergic skin reaction which led to eventually being taken off imatanib for 3 weeks and then started on Dasatanib which I have been on since Christmas. I have some side effects , headaches to start with and some fatigue now but generally its been ok and have a blood test on Monday so will see how things are going . All the best, Nick
Hi Erica, I am struggling with fatigue a bit at the moment and low mood a bit, I would imagine these are side effects of the dasatanib I am on. I was a very active person with an outdoor job until being diagnosed with Chronic myeloid leukaemia in September. I was also diagnosed with prostate cancer at the same time . I am on active surveillance for that with 3 monthly blood tests and the latest one is due in a fortnight. I find the lead up periods to these blood tests very worrying as generally I concentrate on recovering from the Chronic myeloid leukaemia. I know plenty of people have worse conditions than me and try and keep positive and my wife is brilliant but its all getting to me at the moment . I am keen to do bits of work to put some normality into my life and trying to put this in place but I am not the best at using the forum etc for reassurance on everything thats going on. Still, hopefully things are heading in the right direction.!
Hi @NickC firstly wow being diagnosed with Chronic myeloid leukaemia and Prostate Cancer at the same time is an awful lot of shock to get your head around.
I certainly underestimated the emotional and psychological side of my diagnosis and that is exhausting.
You are also on treatment and that takes it’s toll on your body medically and also practically.
We all have god times and not so good times.
I still after 21 yrs get anxious before and during all tests, treatments and appointments.
I reckon that you are using our forum and honestly which is your first step.
I really find diverting my mind really helps me, it is not easy.
Yes, normality is good for me.
I find fresh air and appropriate exercise works for me, I love my music and I am also a Pilates girl.
Slow and steady wins the race in my book.
Your wife sounds brilliant, don’t forget she has gone through this with you emotionally, psychologically, physically and practically and often people do not ask how the spouse is is, perhaps treat yourselves
Be ever so kind to yourselves and yes, I reckon things are going in the right direction, but watch out for those potholes.
Keep posting
