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Just a few questions for a newbie...

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Hi I'm Sean and was diagnosed 3 weeks ago with CML I'm 44 and was totally unprepared for shock, I went into a random blood test and came out with chemotherapy! Anyway I have just started on imatinib and my legs are killing me I have read a lot on forum which is awesome and also the Primer document has explained it to me so well but as an ex sportsmen and active triathlete I'm used to lactic acid build up and pain after races but this is so nagging ! I read an Australian article that said younger sufferers would get less side affects changing to another drug what's the advise here? Secondly I wondered if anyone does intense exercise while on the drugs and do they affect you or your body in anyway. I'm just desperate to feel normal again sorry.... 

Thank you for all the info that is on website it's helped us so much in gaining knowledge and an understanding and I know it will take time...any advise gratefully received 

Sean 

 

Hi Sean.... diagnosis from a random blood test is common- and is always a shock! We can help you over this and advise on other issues that may come up of the coming months. The muscle/leg aches are a common side effect of imatinib and are generally- for the majority- self limiting. I suffered from the same constant aching for exactly 12 weeks from starting therapy with imatinib. After that they disappeared - practically over night-  Others do not have this initial side effect but most find it a problem but it does disappear for most within the first 3 months maybe sooner. Heat is very good- do not let your muscles get cold.

Many of us find exercise/stretching really helps- but give yourself a chance to get to grips with a. the disease and b. the effects of TKI therapy.

If you find after 3 months you are still suffering then you may be able to get access to other TKIs- although this does depend on where you live. 

Hope this helps, but please keep asking for advice on any issue you may have over the coming weeks/months.

Sandy

Hi Sean. welcome the the new world of being a CML patient. sorry you have had to join us. I was diagnoised at 45, and put on Imiatinib. I was a keen squash played before diagnosis, playing to a resonable club / team level. I to had leg pain after starting treatment, lasted about 10 days, then none since. I played squash pretty well though out and now still play 3 or 4 times a week, 4 years in, so quite physical, and active.

I found after starting the drug my fitness probably increased a little as less tired i guess. So in summary yes for me life went on as normal. I have little to no side effects and personally feel fitness has helped. So hope my positive story gives you confidence you will soon be running round again. Hope all goes well, sure it will, you are on a great drug, and have an illness which is very treatable for most these days.

Nigel 

Hi Sean,

Welcome to the club no one wants to join.  ;)     Hang in there mate.  You will be going through a period of adjustment and shock!

I was 42 when diagnosed.   I've been on imatanib since clinical trial and for just over 15 years.   I was and am still also very physically active.   I'm a horse trainer and a horse riding instructor.   Was when I was diagnosed and still am now.  

I found there were a couple of things over and above stretching exercises as suggested that reduced side effects and particularly those you're describing.   I already did stretching and warm up as part of daily routine anyway but I still got those awful pains.

1.   Take the medication at night and immediately before you go to bed.   I take it with a small light snack (a small jam tart or a ginger nut biscuit) because I used also to get dreadful indigestion and heart burn.   Then I just sleep off the worst of immediate side effects.  

2.   Drink tonic water and eat bananas and make sure you have sufficient salt in your diet.   I used to mix tonic water with an electrolyte drink.   Odd combination but it worked for me.        All good to help reduce incidence of cramp as you will know being an ex triathlete.   
 

Thanks Sandy, Nigel and Darley 

Much appreciated for advise; Tonic water and bananas on the diet now, leg pain miraculously went early this week so 10 days of it, did 5k race Saturday and it felt fine, i'm desperate to get back to normal, emotionally i'm there but apprehensive about the physical side going from 7 days a week training to none is a body shock! 

All 3 replies hugely positive and thank you i was led to believe that no one my age gets this but clearly thats rubbish. THANKS AGAIN i feel whole lot better

Sean

Yep!  We can most definitely confirm that's rubbish!

 

I was told I wouldn't see out 3 months.   That was over 20 years ago.   That was rubbish too :)