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New recruit!

Hi!

I’ve been reading posts on this forum since recently after my diagnosis in January this year. I’ve found it really helpful and it’s lovely to see how supportive everyone is of each other. So I thought I’d say hello and recount my own experience.

I’ve been taking imatinib since February and have had a good response (down to 1.1% at 4 months from 95% at diagnosis), but have found the side effects a real struggle. After the initial months of bone pain and generally feeling ill, weak and unbalanced, I seem to have settled in to a pattern where I am either fine or not too bad for 2 or 3 weeks and then have about a week where I start to feel ill, with 2 or 3 days where I’m pretty much out of action and feel terrible. I also get a strong burning sensation in my muscles and loads of water retention (3/4 of a stone last time!). Apparently these intermittent side effects are unusual. I’ve very recently been prescribed phosphate tablets as apparently my levels are on the low side. I think any extra exertion, like walking more than a couple of miles, seems to make things worse. I was a regular runner before all this started.

I’d be really interested to hear if anyone else has had similar symptoms or experiences to mine and if you’ve found any good remedies or just ways to cope!

All the best

Sue

Hi Sue,
thank you for posting your story so far. You have responded very well to imatinib as you are well within the latest research by D. Marin et al that cites for and optimal response less than 10% at 3 months from diagnosis is preferable. Of course this is 'optimal' and there are those who take a little longer in getting a MCyR then CCyr and then downward bcr/abl% levels to MMR 4 or 4.5.

Re: side effects. I would say that yours seem quite severe and are obviously affecting your quality of life.
Given that there are now alternative TKI therapies available you should ask your doctor to consider changing your therapy.
Nilotinib is available here in UK in both first and second line treatment, dasatinib is currently no available in 1st or 2nd except through the Cancer Drug Fund for 2nd line or through clinical trial for newly diagnosed... ponatinib is also in clinical trial as is bosutinib.

Maybe talk to your doctor about the possibilities. Most TKIs have different side effect profiles. Given your profile I would say that you are a candidate for change as you might well be considered as imatinib intolerant.

Best wishes,
Sandy

Many thanks Sandy for your reply. I think it's been hard for me to make sense of what's going on and it's reassuring that you think the side effects seem difficult, as I have certainly been struggling but perhaps been in denial as so many people seem to get on with the tablets so well. When I've discussed changing tablets with my doctor he's thought it best to try imatinib for a few more months. But if things carry on in the same vein I think perhaps I should ask to switch sooner. I'm slightly hopeful that getting my phosphate levels up might help, but I'm trying not to be too optimistic as it's then a real downer if I feel bad again. The thing I find most hopeful is that it could be possible to come off medication after 3 - 5 years or so if things go well, so I try to keep this in mind if I start to find things too bleak!

Hi Sue and welcome to our club,

I was dx's in April 2009 and similarly to you responded well to Glivec but stuggled with the side effects. I took Glivec for about a year and a half and whilst the good days stretched out for longer and the bad less frequently, life wasn't altogether pleasent and like you, I continued to struggle with running or any form of exercise.

I then transfered to Hammersmith Hospital and was moved onto Nilotinib and I can't stress how my life completely changed. I experianced side effects for the first couple of weeks then they all but disappeared (the ones I have left I really don't know if its the drugs or that fact of now being in my 40's). I lost the weight I'd put on, my energy levels returned to normal (if not better as I don't drink so much these days ;-))and now I take part in triathlon's and exercise most days as well as working 11 hour days in a pretty stressful job. On Glivec there were days when I physically couldn't get myself out of bed.

I am sharing my experiance with you to highlight that whilst you are responding well, you don't need to be feeling rubbish along with that good response. I suggest that you push hard to be moved to a new TKI. You have nothing to lose as these drugs are even better, and everything to gain.

In the meantime however, I managed my glivec side effects with the help of a nutritionist, lots of whole foods, juices, suppliments and trying to stay away from the bad stuff that you seem to crave with glivec as its so hard on the tummy. Tough but definately helped me.

Where do you live and which hospital do you go to?

Do keep me informed of how you are getting along and the best of luck Sue
Lynn

Hi to all , just read your comment sue on felling weak and balance not quit right, to put you in picture , I was dx i14th dec 2009,started treatment jan 6th 2010. About aug 2009 I started a slight balance problem thought nothing of it at the time,then I started get a hissing in my ears,woke up one night thought the centre heating was on ,ever since the balance has got worse ,if I'm tired and in the dark jus all over the place, fatigue a big problem at the moment .Off work for the last two weeks , a tenant reported me for being drunk on sight.doctors say I'm suffering from bilateral vestabuler hyper function . Doing exercises to try and help but dose not seem to be working at the moment.Im just wondering if it's the condition .Is there any one out there that's had same experience ?.I Am on imatinib 400mg at MMR ,the only side affects eye bleeds now and then ,and puffy eyes in morning,slight cramping . Well that it tor now.All best
Tony m