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GLEEVAC SIDE EFFECTS

HELLO I am on imatinib 400mg and have lots of muscle cramps, bone pain, short of breath and insomnia. what can I do for these side effects?

On another note, When are we going to see medications to kill Leukaemia stem cells?

Hello. Have you been on Glivec for long? I can speak from my own experience, as I've been on Glivec for over 3 years now, and many of the side effects do get much less as the weeks pass. The muscle cramps don't go away entirely, but they get much less frequent and easier to bear. I think some people find that quinine or tonic water helps a bit, but it didn't make much difference to me.
Bone pain - I had it for a bit after I first started on Glivec, but was able to take occasional ibuprofen. It's a sign that the pills are working!
I don't know about shortness of breath and insomnia as I haven't had problems with either of these, though I don't sleep for as long at a stretch as I used to.

I hope this helps a little and that you manage your cml as well as possible. This site is a wonderful source of information, and someone will usually have experience of whatever is worrying you about your cml.

Olivia

white blood cells seem to decreasing from around 40 to around 18. Platelets however kept increasing reaching 1 million soon. will this make me progress to stage 2? This is my first month on imatinib.diagnosed this month. I am losing some weight and apetite is declining. what do u think should I do?

I hope you are seeing your cml specialist regularly - he/she is the person who can best advise you about your individual situation. Where are you being treated?

I hope you are seeing your cml specialist regularly - he/she is the person who can best advise you about your individual situation. Where are you being treated?

Hi Olivia ,I still get cramps even now, also have shortness of breath,but only came on about 21months ago ,get very tired quickly ,and when I say tied, i mean very very tired like wadeing through treacle .balance is a big problem at the moment been sent home from work looking like I'm drunk ,I also sound slured .Anyway you do get used to side affects ,having said that I'm thinking of going on another tk. All the best tony,happy new year.

Hi Tony

I do still get cramps, but nothing like as bad as they were when I was first diagnosed 3 years ago (or is it just that I am more used to them?). Like you I get very tired, it comes on suddenly and I realise my brain is not working properly, though I have yet to be accused of being drunk! Luckily I am retired, so an hour's sleep in the afternoon is easy for me when I need it. The other thing is the chill - I can get into bed and feel warm, but still shiver as if I was freezing cold, like having goose pimples in waves all over.
Anyway, happy new year to you too, Tony, and to anyone else who reads this.

Yes, and on one occasion for me sheer agony as it happened in the major neck muscle and lasted 2 years. It appears that taking statins increases these cramps, so, if you are taking them, get onto at least a lower dosage if you have to stay on them. The other thing statins can do is increase the efficacy of Imatinib ( good thing). Prof Steve O Brien answered both questions clearly and directly at the Cardiff patients conference last year.
I'm sure scientists are working hard on developing something to kill these blasted stem cells.
Best of luck - hang in there
Chrissie

I suffered from muscle cramps and was put on quinine which i reacted badly to. Yu would need to drink thousands of
litres of tonic water to get any benefit.

I was prescribed Calcium tablets but make sure there not the chewable ones and Magnesium which certainly helped.

Make sure you treated at a centre of excellence. Not sure if you mentioned where you were being treated. The bone pain should subside fairly soon.

Steven

imatinib/Glivec side effects do vary with individuals but... it does seem that muscle cramps and bone pain is pretty common to all of us. As others have already said- this side effect does get easier as time goes on - especially the bone pain- and your body adjusts. Shortness of breath could be caused by low red cell count (i.e anaemia) which can also cause the tiredness that others have commented on.
You mention that your platelet count is still high but you do not say how long you have been taking imatinib? Sometimes it take a while for all your blood counts to normalise- but this should happen within the first month or so.
On the issue of leukaemic stem cells. Research into how to target the elusive stem cell is ongoing. There is a clinical trial called 'ChOICES' which combines imatinib with another drug called 'hydroxycholorquine' in order to target the stem cell. See the clinical trials page (main menu) for details.

Meanwhile, I hope your insomnia improves ... having had a recent diagnosis of CML, it is not surprising that you are finding it difficult to sleep.
Please let us know if you need any further advice. Best wishes,
Sandy

I was told by my cancer nurse that if i were to take Quinine i would meed my bloods checked every other day as it will effect my counts. he got the info from Novartis i think.