Hi, am 5yrs on with CML taking 800mg Glivec. Have managed very well following the intial leg cramps and sickness but have recently been having severe pains in my legs again, especially my left leg. I am very positive about my CML but this is very debilatating on top of the fatigue and sickness. I would really value a few thoughts from anybody who maybe experiencing similar symptons. Thanks, Chris.
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Dear Chris,
I am sorry to hear you have such severe leg pains. I can only suggest that you try stretching excercises, especially as the problem seems to be one sided mainly. Quite often the hamstrings which run down the whole length of the leg..including the buttocks... shorten and cause a lot of discomfort.
As tiredness is an issue so often with this sort of therapy a lack of exercise is often the cause of such aches and pains.
I know it might be difficult but I would recommend that you try to walk some distance each day and build up your stamina that way. This would also stretch your hamstrings a little and might help with this side effect.
Drinking plenty of plain water is also helpful in getting rid of toxins which build up and can be held in the tissues.
pain killers can help too... if taken with caution... as can direct heat (microwave heatpacks or hot water bottles can be really effective) applied to the painful areas.
If your symptoms do not improve then I suggest you talk with your doctor as it might be that another TKI would be more suitable for you as they do not have cross intolerances.
If the sickness is still a problem then this might be a solution for you and it might also solve the leg pains and tiredness.
I hope this is of some help.
Best wishes,
Sandy
Hi Chris,
How do you know for sure that your leg pains are caused by the Gleevec that you are taking. Have you seen a doctor? I think that you need to confirm that it is the Gleevec. Once that is done and if it is indeed the Gleevec then your CML specialist should give you your options. Your QOL should not have to suffer. There are many good alternatives to Gleevec.
You could do something silly like stop the Gleevec for a while and see if the pain goes away.
Zavie
Hello Chris
I had severe leg pain on Glivec. It can be just terrible. It really helped me to walk every day, sometimes I could only manage up the road and back but it was worth it. Also tests showed that I had a Potassium deficiency, and this can make muscle pain worse, so I take a supplement prescribed by the hospital. Magnesium deficiency can also make pains in long bones worse, so ask for these levels to be checked out when you have your next blood test. Have you tried taking paracetamol? This can help. and I used it sometimes at night to get to sleep without the pain and cramps disturbing me. (also walked in the evening and this helped as well)
PLEASE PLEASE don't be tempted to stop Glivec without hospital support. Even with hospital support I lost my PCRU when I stopped for just 10days, 4 years ago, and I have never got to zero again.
I now take Tasigna, and quality of life is much better on a day to day level. I have problems with blood sugar and cholestrol on Tasigna, but these are controled by more drugs !!! and diet. Hey ho CML brings a bundle with it.
Good luck,
Pennie.
Thanks for your comments everybody.
Am reluctant to stop taking Glivec without speaking to my consultant Dr Lucas at the MRI i Manchester first.
I do live a very busy active life as manager of Oldham Cancer Support Centre www.oldhamcancersupport.org.uk which is the charity i established to help others since my diagnosis.
I am now taking Paracetomol Pennie so hopefully that will ease my pain. Am back at the MRI shortly and will address this issue then, maybe looking at an alternative to Glivec.
Thank you.
Chris
Chris
This may be a red herring but worth investigating - a few years ago (I am 6 years after dx) I had excruciating pain in my foot - it turned out to be sciatica - a slipped disc in my back was the cause of the problem, pressing on a nerve which lead down to the foot. Quite often the pain from sciatica is in one specific leg depending on where the disc has slipped. I too was convinced the problem was somehow CML related - I was actually quite relieved to find out it was something as mundane as a back problem.....
Hope you get to the source of your problem.
Best wishes
Annie
Hi i am 6 month on with CML taking 400 mg glivec tabs.i have done 4 bone marrow biopsy in one month.and now my right leg is paining very hard.I would really value a few thoughts from anybody who maybe experiencing similar symptons.
Hi Sandy and other fellow contributors,
Have been on imatinib for over 8 years and have always experienced muscle cramps especially at night usually at 3 or 4 in the morning.Taking advice from various practitioners I find that it is very useful to drink lots of tap water in the day and to do lots of leg stretching exercises on the bottom of the stairs or at 45 degrees to the wall-for me it has worked.Tap water in hard water areas contains lots of magnesium so this is an added bonus.In addition I have found that limiting alcohol intake is relevant because it dehydrates or when taking a glass of wine match it with a glass of water.
I took up serious walking and that seemed to eliminate night cramps as well but it led to inflammation of the heel or bursa which despite physio is difficult to eliminate unless I do 3 sets of stretches every day on the stairs for instance.
Upon dx I found a list (source cannot find any more) of side effects for imatinib and musculokeletal and connective tissue disorders and are quite common it seems:
Very common 1>10:muscle spasm and cramps,musculoskeletal pain including arthralgias
Common between 1 in 10 and 1 in 100:joint swelling
Uncommon 1 in 100 t0 1 in 1000:sciatica and muscle stiffness
Rare 1 in a 1000 or more -asceptic bone necrosis mainly affecting head of the femur
I have seen a few articles that attempt to consider the long term effects of exposure to imatinib and the other tkis but nothing definitive comes out on long term impacts of imatinib on bone morphology or condition.
I came across an interesting article in Journal of Clinical Oncology dated 2003 titled "Practical Management of Patients With CML Receiving Imatinib"; the authors included Brian Druker and Stephen O'Brian.They found that cramps are quite common as side effects of imatinib and despite calcium and magnesium levels often remaining normal in patients that calcium and magnesium supplements can offer symptomatic relief.
They suggested that bone pain and arthralgias were reported in 20 to 40 percent of patients on imatinib;these are frequent in the early months of therapy and it is suggested are associated with clearance of leukemic cells from the marrow.Symptoms frequently affect hips,femurs, tibias and knees.Their experience was that imaging studies failed to find any abnormalities and concluded that the cause is not clear.
They suggest the use of NSAIDS but that if platelet scores are not normal that proton pump inhibitors be used as well so as to prevent intestinal bleeding.
What is not clear is whether such episodes of bone pain and other musculoskeletal disorders arise other than in the early stages of taking imatinib-in my case for the last 2 months have had some bone pain issues in the femur and quite severe knee pains and some lower limb pains. As well the posterior muscles to the hip joint are mildly inflamed. GPs who for good reason are not fully aware of side effects of imatinib tend to suggest an urgent scan to rule out more sinister possible causes.
I wonder if other forum members have had flare ups of inflammatory symptoms other than in the early stages of taking imatinib.I am aware that some patients experience arthritis and other severe pains and find it difficult to tolerate imatinib.
My PCR is quite satisfactory and still on the decline but will discuss with my haematologist in a few days at my next appointment.
I only use Diclofenac when needed and try to avoid codeine phosphate.Have found that Diclofenac gel applied topically is useful;one GP suggested that any cream that contains capiscum or chilli is helpful for joints.Am also on a calcium and magnesium supplement and will have that measured soon.
The alternative of course is to make a diet rich in calcium and magnesium with say taking a pint of full fat organic milk each day that is high in omegas.Some suggest omega supplements but one nneds to discuss with a medical practitioner if self dosing I suggest.
I find that lots of water is good for muscular issues but one needs to be persistent day after day.
Final interesting research evidence from some Australian researchers giving a poster session at ASH 2011-they concluded that Diclofenac is likely to have a positive influence on imatinib efficacy but that Ibuprofen may affect efficacy of imatinib and limit uptake of the CML drug
Any similar experiences of painful bone and other issues flaring up in terms of long term use of imatinib would be welcome
Many thanks
John W