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My feet hurt...

Hi folks!

Does anyone else have a problem with their feet? My feet are really sore and my ankles are very stiff. It runs up the front of my calfs as well. My daughter wanted to race this morning on her way to school, I started to run but my legs ached so much I had to stop.

I feel that I shouldn't really moan, I've been diagnosed and am receiving treatment (very god treatment). But I feel that my children are missing out on a healthy dad to run around with. It's upsetting when you are only 39. Not to mention my wife, we have lived in our new house for a little over a year now and I still haven't decorated...

I get those, especially the arch of the feet and, it seems, anywhere between the toes and the knees and mostly when I walk and occasionally at night, when I (try to) sleep... Tonic water has been mentioned as helping because of the quinine it contains but so far I have yet to find anything to help me.

There is bound to be a more sagacious being on this site that can help you ;-).

Paul C

Iv had really bad calf muscle when i was firstly diagnosed with cml. Sometimes i get aches and pains in my legs still but when i was first diagnosed i used to get it about 3-6 times a day and it was really really anoying. I took Nurofen/Codeine and calpol all at the same time sometimes which my doctor said t was ok.It really not such a problem now.Hope you find a way that gets rid of it.
Best of luck Rio

Hi, I know in the past some members have been put on Quinine tablets by their Doc to ease cramps with some success. May be you could try this. Don't think tonic water has much quinine in it these days, mind you good excuse for a G+T ! not for you Rio !!
Also a good Calcium + Magnesium supplement may help.
Good luck.

Not had sore feet as such but I do get cramps in my toes, especially the big toe. It is short lived but very painful when it occurs. It happens in my fingers too.


Hi Steve

I had terribly sore feet which started on glivec and got worse on the BMS. My pains seemed to start on the soles of my feet, for example, when I got out of bed it was very painful to walk for the first 30 seconds and then was fine. It got to the point where it got worse and I got terrible pain everytime I got up after sitting down. It was agony. It got better with a short course of steroids and it is now so much better since I have stopped the medications.

There is a condition called plantar fasciitis which gives terrible foot pain. This is very common in the 40-50's apparently!


Hi Elizabeth
What do you mean - G+T is my favourite drink at tea time!!!???
:> :>

Hi Susan i get platafasyitus (how ever you spell it) and iv had it for about 2 and a half years. But since my dx im not sure if its got any thing to do with my cml instead.Its some times bothers me and sometimes its ok. I get a different pain on the bottom of my feet when i jump and when i stand up from sitting down but that is very occasionaly.

Hi everyone!

Well, I've been to the GP and he has prescribed Quinine (one a day).

I've taken a couple so far and the pain seems to have eased a little but now the tops of my legs (knees upward) and my right forearm are aching quite badly.

I guess I'll have to put my feet up and watch telly for a couple of days :-)

Thanks for the replies.


I was diagnosed with cml 6 months ago. I am on my feet all day and since I have been diagnosed my feet have been killing me at night. It seems like a coincidence that my feet are hurting and I have cml. I was wondering if anybody else has this problem and what they did to help or fix it. I am on tasigna for treatment and wasn't sure if that or the cml was the problem (or both).

Do your feet ache or is it more of a tingling/burning on the soles rather like walking on broken glass - type of feeling? I had the latter problem for a couple of years - especially after going for walks. It reached a point that I couldn't stand flat on my feet but had to balance on the sides. I stopped taking statins prescribed by my GP (along with all patients aged over 40) and within a few days my feet returned to normal - and no problems since.


I had plantar fasciitis in my right foot a couple of years ago, which eventually eased off, and I don't connect it with cml, or imatinib. However, since then I have had a strange feeling in both feet, as if I have an extra insole or an extra layer of tissue from the balls of my feet to my heels. It's hard to describe - not exactly painful, but certainly uncomfortable, and I'm most aware of it in the bath and in bed at night. The GP said it was "just one of those things", but I do wonder whether cml or imatinib is to blame. Could my history of foot cramps over the last 5 years have damaged the nerves in my feet?


Hi there all,
Some comments .
Many of us who take tkis suffer muscular skeletal side effects.Have had night cramps off and on at night for years.Speaking with different consultants and gps the most natural remedy is hydration which means drinking lots of water or juices;tea and coffee dont count as these can dehydrate and alcohol dehydrates.Apparently dont do this too much after 8 pm at night otherwise you will be up all night off to the lou.
The other remedy is stretching exercises such as leaning against the wall at 45 degrees and stretching calves feet etc on a regular basis.I have found that both these methods do work but it is just being disciplined to do it.The other remedy is to do lots of walking as exercise.The alternative is to be woken at 4 am with muscular cramp in the thighs and legs often both at the same time-very painful.
Quinine sulphate have not tried because apparently long term can have side effects on the heart.
Tonic water contains an awful lot of sugar and the slimline versions often little quinine in them but have some nasty chemicals as sweeteners.
Foot problems-currently having physio for plantar problems due to too much walking or walking badly.Again the stretching and strengthening exercises apparently should be helpful such as standing on the lowest step of the stairs and stretching the foot and the calves.The other approach to foot issues is soft tissue massage such as in reflexology .I have bought a roller with little points on it that acts as an acupressure massager-I sit in the chair in the evening and roll this with the foot for half an hour . Bought it on Amazon.The other approach is the plastic spiked balls about the size of a tennis ball that are used in Pilates;roll the ball or grip it using the foot.The alternative is to have acupressure or reflexology but can be expensive.Some cannot tolerate foot massage I believe due to sensitivity of the foot.
I suspect that cml does not cause the issues above but that the tkis may contribute to stiff muscles and joints plus cramp.
Like all exercises and physio that we should do it takes a lot of time and one needs to be disciplined and work at it.
Best wishes

I'm not convinced that the normal precautions against cramp are effective in the case of imatinib-caused cramps. To me, these are different in several ways from the "normal" ones.

1. They last longer - up to 6 or 7 minutes sometimes.
2. Different muscles are involved. I never had cramps in my hands before taking imatinib, and my leg cramps are not in the calf muscles, rather on the outside of my leg, or the front of my shin.
3. Putting weight on the affected leg does not really help, one just has to wait for them to wear off.

Having said that, I agree that we all should probably drink more water, and do more exercise!


PS Was it Sandy who said that she once had cramp in her tongue?

Yes Olivia.... that is correct- I had 'cramp' in my tongue at least twice when I was taking imatinib! Not a very nice experience ;o)

I do agree that the kinds of cramps caused by TKIs differ from the usual kinds of muscle cramps we are all familiar with. I think they are described as 'tetany' in some papers which can be caused by low calcium as well as low magnesium.

I also agree with John's suggestions for mitigating these kinds of cramps- ligaments rather than muscles seem to be involved so stretching exercises as John described can and do help in my experience... as does drinking lots more water (in addition to that which is contained in other drinks such as coffee/tea/juices etc.)
Regarding tonic water- one brand is much more natural, its called 'Fever Tree' and is available in most supermarkets now. I am not sure how much quinine is in it and it does contain sugar- but at least it does not contain the usual chemical additives.

Heat packs are really worth using, especially at night.


I'm another in this camp. Dasatinib, 100mg.

Ankles hurt most of the time, usually not too badly but every now and then they are a real pain. Sometimes I wake up with a cramp in the sole of my foot - not the best alarm clock!

I cramp easily, lots in the hands. Today, just binding down to pick something up my calf cramped really strongly. 6 hours later and I can still feel the effects of it! I get the calf cramps frequently at my desk, so I try to move around as much as I can and that seems to help.

In general, I consider it a minor side effect and try not to worry too much. However, I'll try anything to make it better! I stretch a lot, and I think that must help a bit. I tried taking magnesium supplements but it didn't seem to do anything.

Hi Olivia,

I have just joined the Forum so am doing a catch up on cramp and imatinib.

Your description of the difference of your cramps to normal calf cramps could have been written by myself! They are quite bizarre. 

As a surgeon I have Taken a twisted delight in identifying single muscle groups of the leg, and even individual muscles, which have developed cramp, but rarely in the usual calf muscles. I’ve sometimes woken with cramp in more than one muscle, and both legs at the same time, so it is difficult to know which ones to relieve by stretching. 

Just to blur the whole thing, I did actually have similar bizarre cramps before my diagnosis, but the nature of the was slightly different. I can get toe cramps, for instance, which stretch out fairly easily. 

The question is, why do the cramps occur with TKIs? Has anyone read of any explanation? 

Looking forward to hearing of others’ experiences or opinions.



Thank you, Alan. 

How funny that you should post today. I searched out this thread and read it yesterday.  I have been on imatinib for 13 months.  I am  seeing a decrease in my BCR-ABL upon each test (which is good)  but I am  not reaching published targets.

The severity of my cramps increased about three weeks ago. My consultant told me last Friday that this is definitely caused by imatinib.

My cramps are mainly nocturnal. More often not, I feel them in the calves of both legs, sometimes in the feet and sometimes in my hands. I had a severe attack during swimming on Friday when I had reached 57 lengths before the onset of cramp, then on Saturday I managed 54 lengths. Today I managed my whole 64 lengths without an attack.

I have read stark warnings against using quinine. I have also read up on magnesium and the authoritative papers suggest that there is no benefit.

I am not sure yet whether this is a sporadic series of attacks or a new normality.


There are papers suggesting that imatinib is a broad-based kinase inhibitor and far less selective than second generation TKIs. The thought is imatinib is acting as a cretatine kinase inhibitor. This appears to be underesearched.

a little appears here:



Dear Nimbus,

Thank you for your interesting comments, and from others in 2015. There seems to have been a four year silence until now!

The article you referred to was informative, and has set me thinking.

With other side effects I am getting, I always ask myself:

1. Is the symptom really due to imatinib? It’s easy to blame the treatment for everything.

2. Is there any way I can help ease the symptom?

3. What is the mechanism which causes the symptom? Knowing this might be the key to resolving the issue.


i am battling with diarrhoea at the moment, but haven’t embarked on answering these three questions for that one as yet.

I'm not clear how these Forum posts work, and wonder whether I should have started a new thread, rather than just replying to Olivia’s post. Could my post have been buried in the old thread? 

Could you clarify that for me?

Thanks again for your reply.


Alan, the threads show up on the forum in the order of the latest post, so if you post on an old thread it comes to the top of the listing again. If you are looking for old threads the search function is very good if you know whose post you are looking for or key words on the subject of interest.

Thank  you, Alan, I agree strongly with you considered observations below.

Alan said 

With other side effects I am getting, I always ask myself:

1. Is the symptom really due to imatinib? It’s easy to blame the treatment for everything.

2. Is there any way I can help ease the symptom?

3. What is the mechanism which causes the symptom? Knowing this might be the key to resolving the issue.

My subjective conclusion after using imatinib for 13 months and having suffered from the direct effects of leukaemia for a little longer is that my strength measurably has reduced by 25%. Otherwise my side-effects are limited to periodic crams and diarrhoea (much worse if the generic used is a Accord).

Taking an objective view, the complaints on message boards of side effects are far-reaching and often extreme. I think it is important not to be judgemental whilst recognising that many of the symptoms may not be caused by imatinib.

All in all, at the age of 63 I continue to work without interruption, I travel as necessary and I swim for an hour at least three tons of week. I think that I am doing pretty well. I am reluctant to take supplements given that I am already collecting a carrier bag full of prescribed medications from the pharmacy every couple of months.