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Side Effects?

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I have now been on Imatinib for two and a half months. Initially, I was walking about 1 - 2 miles a day and gradually increased this to 3-4 miles every other  day without ill effect. I had a complete haematological response fairly quickly and started to feel I had more energy, especially after exercise. So far so good…

However in the last week I have found it increasingly more difficult to walk the distances I would like, and feel very tired after short 2.5 mile walks. This a definite retrograde step for me. I have also started having mild headaches during the day, particularly after exercise and feel quite tired a lot of the time. I have also noticed a distinct sensitivity to low temperatures and drafts, which is new to me!

Have any of you veterans out there any experience of any of these symptoms, and if so how long did they last? Until October I was fairly active, walking, cycling  and regular gym work outs. I should be most interested to discover how others have fared in this stage of their recovery/journey. Are these common side effects of TKIs, I wonder or should I be expecting something else? I do appreciate that everyone has differing side effects both in content and severity. Perhaps I am just being too impatient.

Many thanks!

David

Hi David

Yes those do sound like the onset of some side effects. I am 3 years in and still experienced news ones after the first year on meds. I think it takes sometime for those to be apparent and it also takes the awareness to notice new ones. I can relate to the drafts you mention. My fatigue hasn’t been in the form of exercise but a more general slump. It’s been fine lately but I expect it’ll be back again at some point. I asked my doc about that and if anything was off on my panels and they’re always perfect according to him. I think it does have some off target effect with our hormones and various other factors.

I think the majority show within the first 6 months to a year. You do learn to seize everyday that you feel “normal” which is far and few between but the things I notice are more annoyances rather than drastically impacting my life. Those that do effect me are cycles of fatigue, insomnia, and muscle cramps when I do any form of cardio ie running.

Ironically I felt very well leading up to my diagnosis other than my massive spleen, drastic weight loss and night sweets I felt great. The meds and not CML are responsible for all of those things. But it’s a “small” price and all that if you can cope with them... I would love to stop meds to remember how it feels to be completely normal again but we can’t until maybe a TFR attempt many many years into the future if treatment gets us low enough.....

I hope they settle for you.

Alex

Thanks for the reply Alex, most interesting and helpful to hear your experiences. I suppose in the final analysis one can always try a TKI swap. Are you still on Imatinib I wonder, or have you switched to something else?

As someone has already mentioned we all experience different effects, so I suppose I shall have to "suck it and see"!

David

I measurably lost 25% of my strength through CML/TKIs.  I have posted on this elsewhere in this forum but would discuss again if  you see  parallels.  I have raised this at CML conferences and meetings.

I had a serious  imatinib side effect  of feeling very cold.  This was particularly  severe when I was swimming even in a pool heated to  29°C.  I had to buy some experimental neoprene jackets to wear while swimming.   This problem disappeared on the very day that I was started on dasatinib.   Personally, I put this problem down to imatinib.

 

 

Thank you Nimbus for that, very interesting - particularly your sensitivity to cold with Imatinib. It raises interesting questions for me if and when I can get back on to a ski slope!

No problem.

I take Nilotinib and was started on this because of my high Sokal score.

Perosnally I would only ever change TKI if my life was in danger or my quality of life was severely effected to a debilitating level. My view is you need to keep as many TKI in your back pocket so as not to invoke premature resistance and/or mutations. Another level of defence if you like.

I am sure things will stabilise for you.

Alex

A very good point, one want's to keep as many TKI's available as possible...

David

 

Hi David,

It is not unusual to experience changes to oneself in the first six months of treatment with imatinib such as musculo-skeletal problems and also fatigue.Your body is getting use to a moderately toxic medication but on the side of big positives your bone marrow is changing and hopefully the leukaemic cells are being to some extent cleared out.I had lots of bone pain in the early stages which I was told was an indicator that lots of good things were happening as a result of medication.Some of the side effects like cramp I can never eradicate it seems-however I dont think things serious enough to risk going on to another tki.

Fatigue,nausea and headaches are not uncommon as side effects.I found that drinking lots of water to keep hydrated and also experimenting with the right foods (for you) when taking the medication helps a lot.I also have a view that at this moment in time whatever the precautions we take we might be exposed to some viral hits whether they be flu like or the other one.

I am coming up for 76 and have been on imatinib for 15 years and find that walking is of great therapeutic benefit-on occasions getting going is tough but sometimes do up to 8kms a day .It helps to minimise the night cramps and keep weight in control, regularise lipids and blood pressure etc.Exercise  makes me very tired so I just relax afterwards  and often I need 8-9 hours sleep each night to counteract fatigue, but so what.

I think that our bodies react to illness and treatments in different ways and also we need to try to manage the mental challenges of having being diagnosed etc.

You might find that over time your side effects will modfify or otherwise you will find a way of trying to deal with them.In the meantime what is important for you is to monitor your progress and bcr/abl score.

I wish you well,

John

Hello John

Thanks for your reply. It's very heartening to know that you have been taking Imatinib for 15 years, and are able to exercise so well. I certainly went through the muscle and bone pains fairly early on in the process, but they have now largely passed. Like yourself cramp continues to be an issue for me, in various parts of the body, but manageable.

Was walking a lot before the diagnosis, finding that 10k walks were easy. Now I struggle to walk 5 and feel exhausted on completion. Fingers crossed that this will pass and that I shall be able to walk these distances again in the not too distant future!

I have always needed 8 hours sleep, and find now I often exceed that, but am sleeping well which is a bonus. As you say, so what?

Headaches are relatively minor, but still irritating, but paracetamol seems to do the job. Luckily nausea has not been an issue up to now.

My next blood test/haematologist appointment is in mid February. That will be three months since the start of Imatinib, and I am lead to believe that this will be the first PCR test, I guess the BCR/Abl score will be forthcoming from that, so fingers crossed.

Being 8 years your junior, I am very encouraged by your post and kind words.

Best

 

David

Hi David

I started on 400 mg imatinib in 2007 aged 50. Early bone pain etc. died down after around 6 months, and fitness was pretty much back on track inside a year. I got back to playing inter club league tennis and some reasonable (10 mile +) hill walking. Nowadays I'm not doing so much but that is more down to the long term impact of an old (pre CML) injury. Even the cramp has died down - suffered a fair bit in the early years. After 10 years I did a year on 200 mg and lost all the cramp. I then tried TFR which lasted 17 months before the BCR-ABL started to drift back up. I went back to 400mg, and am back at MR4. I will be talking to the consultant about going back to 200mg later this year. Unlikely to try TFR again - when the current restrictions are over I want to do some traveling and need a stable history for insurance purposes.

Hope that helps.

Alastair

Good to hear from you John, thanks for sharing your Imatinib and side effects journey.

It sounds as though you recovered really well. If I can get back into some decent walking I shall be well pleased.

I recall a previous thread where I think you described your TFR journey. Sad that it didn't work out  - however if you can get back onto 200mg per day that seems to be a great relief from some of the side effects.

Travel insurance - that's another battle I have not yet started...

Best

David

Sorry Alastair, that last reply was for you!

David