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Hi

My husband wad diagnosed with CML in July 2002 and was lucky enough to recieve Glivec straight away. All these years later he is still taking 600mg daily and PCR testing is showing all the noughts.

He has done very well ,at  the age of 60 he is still working .However over the last couple of years has been troubled with muscle and joint pains that have stopped him running. (that he was doing on a regular basis ). he is now struggling with the pain and feels he is physically going down hill.

We have seen rheumatologists but everyone seems reluctant to prescribe much as im sure sure they are frightened of rocking the boat as far as his CML treatment is concerned . We are fully aware of how fortunate we are , but wonder if other people have experienced similar symptoms.

I hope his longevity will give others more recently diagnosed  lots of hope .we are very fortunate and hope that others will be as well cared for and lucky as we have been.

Hi Patricia, 

Congratulations to your husband for maintaining all the zeros! 

600mg of imatinib is a high dose. The usual dose is 400mg. Perhaps it's worth talking to his doctor about reducing his dosage? His recent muscle and joint pains could be imatinib related (side effects don't necessarily always present from the beginning of treatment), but of course they could be because of something else altogether.

You may have read about many people successfully stopping taking imatinib (or other TKIs) altogether and maintaining a treatment free remission (TFR) - is this something he'd like to do? It might be worth raising with him and his doctor. If I had held all zeros for many years it's certainly something that would be on my radar.

David.

Hi Patricia,

Firstly congratulations to your husband for maintaining his excellent response to imatinib. However, I do agree with David's point about 600mg being his dose over such a long period - especially given his excellent response. For someone with his PCR results I certainly would agree that he might want to at least reduce his dose to 400mg and see if that has an effect on what are likely to be imatinib side effects. Many of those with such excellent PCR levels have either considered reducing even further than 400mg, or considered (as David has suggested) stopping altogether - within a clinical trial or with increased monitoring by their doctor.

I hope his doctor would consider at least a dose reduction to 400mg.

best wishes

Sandy

Hi Patricia,

Regarding your husbands experience of a 600mg imatinib dose and musculo- skeletal issues with muscular pain my history and situation might be of some interest and use.

First you do not state the reason why the specialist still prescribes the higher dose -presumably it is because of an imperfect response in the past or an event such as a loss of remission that warranted an escalation of dose.

I am surprised that none of your partners doctors have not measured his CK -creatine kinase or CPK-creatine phosphokinase because  an elevated score would indicate myositis or muscle inflammation resulting as a side effect from the drug.If this measure has not been undertaken I would suggest that it be requested.

I am not surprised that other skeletal specialists hesitate to prescribe anything such as NSAIDs such as paracetemol,,diclofenic or ibuprofen to relieve the muscle pain.At a high dose of 600mg imatinib the use of  long term paracetomol would hammer the liver even more,diclofenic without using safeguarding proton pump inhibitors would be likely to drill holes in the stomach.Research at Adelaide University has indicated that ibuprofen combined with imatinib is a no no as it affects the  blood plasma levels of imatinib substantially.

I have been on 600mg of Glivec for 9 months now because my PCR rose to nearly 0.4 and we lost our molecular remission and there was a danger of transformation to accelerated phase/blast phase;the latest PCR is 0.009 which is a log 4.5 reduction.However  my CK score hovers around 600 to 800 well above the normal reference range of 38-190 and the muscular pains are at times severe especially at night.I cant run any more and walk with a constant drag and limp as the excess enzymes in striated muscle of the right leg leads to substantial weakness;steep slopes are frightening and I need the use of a stick..

I have just had a very frank discussion with my specialist who has long experience of administering all the TKIs .It went something like we could reduce your dose to 400mg but as you have already had one loss of molecular remission if you experienced another loss of remission and we could not get it back a resultant uncontrolled  transformation to accelerated/blast phase would kill you.As long as the CK score is not in the thousands and the myositis does not affect the heart or the brain then we will continue with 600mg despite substantial muscular discomfort.At a CK level below 1000 myositis is not a threat to life so one must  just tough it out.

It looks like I will be on 600mg Glivec for ever as we need to ensure a durable and lasting response;the dose is quite tough and if I dont take it with a high carb meal and lots of water it leads to severe nausea,sometimes vomiting and  bad headaches.

My case might or might not be exactly  similar to yours but trust it helps

Best wishes

John