Hi, I was diagnoised with CML on the 29th August, very early days with the condition. I started on Imatinib two weeks ago and have gone through nausea to now aching joints. Just wondered if this is normal and will continue. I am having hot baths and just bought an electric blanket to ease my joints at night. Any advice would be very welcome.
Catrina x
Hi Catrina
Welcome to the club no one asks to join.
All of those are quite normal side effects - generally, for most, they ease with time. If baths and heat work to alleviate joint pain then that sounds like a good way to deal as things settle down. I'm three and a half years down the line from you and I still get the occasional nausea bout (usually if i get the timing wrong), cramps (tonic water helps that) and indigestion which I can sort out. The other thing I do get in the winter are chills - a feeling of really cold skin - which a hot shower sorts out. So I still get quite a few things but nothing that I can't deal with.
Good luck. There's always plenty of good advice on here.
Richard
Hi catrina
I was diagnosed 9/9/09 so 3 years down the road. It was difficult to accept and come to terms with at first for me but finding this support group was a great help.
Yes your side effects are quite normal and may ease as time goes on.
I hope finding this support group that you find you are not alone
best wishes
jacqui
Hi Catrina,
I too had aching bones and joints at the start.
This disapeared completely after around 6 months.
My consultant put this down to the fact that my bone marrow was changing (for the better).
Its a good sign that the drugs are working.
Keep your chin up! Your life should return to normal very soon. :)
Good to hear you are okay now, interesting that the bone marrow starts to change so quickly. It feels like no other pain I have had before, not in intensity just different. My consultant said the drugs are working so hopefully it is that!
Thanks for responding Catrina
Hi catrina,
Sorry to hear about your diagnosis but great you have found this site that I'm sure will get a lot of information from and a lot of comfort. I was diagnosed July 2011 so just over a year ago now and I never really thought that I would ever really forget about my cml but I do! When I was first diagnosed I posted here to and got a lot comfort even from people just responding to my post. People told me that it got easier but I wasn't convinced but now I understand what they were saying. For me side effects in the beginning wAs the leg cramps to and hot baths helped me to. They only really lasted first few weeks and then disappeared! I do get nausea if I don't have a descent breakfast so try eat before you take your imatinib. Other than that I'm cold and hate this cold weather! Glad you have introduced yourself and ask any questions you like I had loads which everyone always responded and helped me through this horrible time.
Take care
Lynne x
Dear Catrina,
I would like to add my welcome to this forum. As others have said already- heat and (for some) tonic water do help with the cramps and joint pains, and yes these do lessen, and for most of us, disappear eventually- generally within the first 12 weeks or so.
I agree, they are pretty hard to tolerate and you cannot spend all your time taking hot baths- electric blanket is a really good idea.
But try to persevere, this particular side effect will get better as your marrow returns to normal- and when your doctor tells you how well you are responding to therapy, I guarantee the whole picture will change.
It might be a little too soon for you but there are several patient meetings held at different specialist centres - usually every couple of months.
I know there are group meetings at Liverpool, Leeds, Nottingham, Hammersmith and Kings College Hospitals London.
Others will let you know if and when others are set up.
There is also a National CML Patient/Carer meeting in Glasgow on November 17th. See link in red at the top of this page.
As I say it might be too early for you to attend this year and Glasgow may be a little far to travel = not sure where you are= but it happens every year at a different CML centre.
If you need any further advice then please ask.
Best wishes,
Sandy
Hi Sandy, thanks for your message. Finding the Forum has been helpful at a difficult time. I am still coming to terms with everything, but it helps to hear from others. I will probably be more into the groups when I am feeling less sick and less in pain.
I am in Manchester, I would be interested if there is a group in this area.
Thanks again
Catrina
Hello and welcome.
I was diagnosed april 2012 and am also on 400mg Imatinib/Glivec.
Cant help you with the aching joints, but for the nausea i always eat at least two slices of bread for breakfast(beeing from Norway i always eat bread with goat cheese), and take the pills straight after ive finished eating. I also take the pills(4x100mg) with a large glass of water, at least 2,5-3dl. If i did get really nauseated then i took a ginger capsule which helps a lot. Luckily the nausea subsided after the first few months, now i usually only get nausea when i stress a lot right after taking the pills.
Hi Catrina
Welcome to the site - its a great source of information and support!
The aches disappeared after two week son being on Imatinib, they pretty much go over night and you'll hopefully be back to feeling normal again. I know a few weeks after the aches leaving I was out running again. For the nausea, I never really have it, but then again I take my tablet with my breakfast every day. I do know though, tha if I don't have food with my tablet for whatever reason, I do feel pretty rough, pretty quickly...so food and liquid is the answer for me.
Seeing as you are newly diagnosed, I would strongly reccommend you going to the patient meeting in Glasgow on November 17th, I went to the Liverpool one just after my diagnosis and it was invaluable to learn the amount of work going on in this field of work, and also it helps you get used to the jargon and the science behind it (without ie being too indepth).
Fingers crossed everything settles down again!
Neil
Hi Catrina,
Looking back, I saw the transition from a poor state of health marked by passing side effect. No nausea or joint pain in my case, but cramps were pretty severe and a skin rash followed.
On reflection I'd observed symptoms at least 6 months before being diagnosed. One of these was knee joint pain which convinced me that like many of my peers, I needed cartilage surgery. Another was hearing my heart beat so loud, that I persuaded myself it was tinnitus. Prior to diagnosis I felt like I was walking around in one of those deep-sea diver suits.
I'm now on nilotinib after imatinib stopped working for me and find that the side effects are far less pronounced. I've even been able to get a good night's sleep now and then which makes a world of difference.
Jeff
Hi Jeff, your 'reflections' on how you were feeling pre diagnosis really resonated with me.
I remember I felt so tired but just passed if off and put it down to pushing myself too hard in the gym.
I had been so appalled at my sudden lack of muscle tone that I had joined a gym.
Even so, I remember feeling so cold even after doing an hours circuit on the various machines that I had to spend 5 minutes warming up under a 'hot' shower.
Then I had great difficulty in walking a straight line for the 1/4 mile or so from the gym to my house. As soon as I go home I was forced to /rest/sleep for at least 1 hour.
Still I continued to make excuses, both to myself and my family- who were increasingly worried about how 'pale' I was looking.
The only reason I agreed to see my GP was because of the swelling I could not ignore on the right side of my abdomen-which I had tried to pass off as the effect of my doing sit-ups in the wrong way!!!
Of course I later learned this was my extremely enlarged spleen! My haematologist was highly amused at my way of explaining what were to him very clear symptoms of a serious blood disorder- i.e CML.
I had been doing this- finding reasons to explain away symptoms- for at least 18 months prior to my diagnosis, but the symptoms are so vague and general that it is easy to do this.
I was a little too good at it though as I was told I had probably had CML for around 5 years before my diagnosis.
I am very fortunate to have survived.
Sandy
