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Dull Pain In Left Buttocks

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Just wanted to get everyone's thoughts as I have been feeling a dull pain in my left butt cheek and was wondering if It could be a result of changing to Nilotinib.  I had an ultrasound in June but they did not see anything.  

Naturally my fear is a myeloid sacoma / chloroma.  This is apparently extremely rare in CML CP but does exist.  I know others have had scares with swollen lymph nodes which turned out to be nothing.  I did have a similar pain in my abdomen but that one cleared up and has since not returned.  

The best I can describe it is like an insect bite (nothing visible) that I can feel sometimes more than others and sometimes is like a slight burning sensation.  I was wondering if anybody has felt something similar.  Take care.

Hi there,

I am responding because I have had similar issues and it might be interesting to relate these to you.You do not say how long you have been treated for CML nor the PCR scores etc .I do not have experience of nilotinib but have been on imatinib for a long time;these tkis do give substantial side effects to the musculo-skeletal system estimated to be up to 40 per cent of patients on these medications.On occasions I have experienced inflammation of the right buttock/posterior muscles to the hip joint and this can last for up to 2/3 months at a time and is very painful.I have been told that it might be nerve related from the spinal area of the lower back and/or inflammation of the muscles (myositis) and is probably drug related. Apart from taking painkillers there is no other treatment offered.I am told that imaging such as MRI will not always  pick up a number of musculo skeletal problems that arise as side effects that we suffer.It has been suggested to me by a neurologist that the drug may have an effect on the muscle enzymes to bring about this kind of inflammation.

I am curious about the condition that you mention of myeloid sarcoma or chloroma and, although not a medical professional, from what I have found out is that this condition is often associated with aml and in very rare circumstances with cml but only when and if one is into blast phase or crisis and it is described as "myloblasts" .We are told that it is very rare for cml to transform into aml and perhaps only if one moves into blast phase.

I presume that you are in chronic phase still and that your bloods and your PCRs are good so if this is the situation I would pursue the line that your pains are more likely to be muscular or joint related and possibly some form of neuropathy.If your CK (creatine kinase ) blood measure is elevated then this would indicate some form of muscular inflammation which might be drug induced.You could try a diet of anti inflammatory foods and do some physio of stretching and strengthening of the affected area.The other line of enquiry might be to see a neurologist and have some nerve conduction tests in the affected area

I trust that I have been of some help

John

John - Thank you very much for the reply as I sometimes post and never know when I will get info back (it's like fishing, lol).  

I have been treated for almost exactly 2 years (two years ago yesterday I was diagnosed).  My PCR has never reached MMR and I have switched from Dasatinib to Nilotinib.  PCR currently is 0.36 down from 1.2 when I did the switch.  So CCyR again and hoping for better in my next exam in three weeks.  

You are correct that Myeloid Sarcoma or aka Chloroma is most often seen in AML (and even there in less than 5% of cases) but it does exist in CML.  It is known to show up in CML BP and AP more often and very rarely (less than 0.2%) in CML CP.  There is scarce literature but does exist.  

The concern is that if it were to show up then it is the equivalent of CML BP no matter what the blood counts say.  In other words you can have CML CP in MMR and if a Myeloid Sarcoma shows up it is considered to have gone extramedullary into BP.  This is not something that you will find an abundance of literature in but something to mindful of if you feel any pain and or growing areas.

Naturally as you said it can be just a side affect of the TKI but as many on this forum are aware this can be a mental battle as well to keep things in perspective.  So to answer your questions I am in CML CP thank God and in CCyR.  The pain I described comes and goes and I currently cannot pinpoint it as I write this.  How long has your pain been coming and going?  A bit of good news I think is that I don't believe a MS would grow and subside without intervention.  

Again thanks for the reply.  Take care.

Hi there,

Thanks for the update .I think that I know have a better picture of the issues involved if one does not reduce to MMR or when one loses MMR.Some years ago I lost my MMR and the PCR s rose to 0.4 which was concerning;at the time my hematologist indicated that the condition could transform (into blast presumably) and gave me symptoms to look out for-as well he gave me his personal cell phone number if these indications arose such as undue fatigue and night sweats and possibly splenal swelling.After mutations analysis (no indications) we increased the dose of imatinib from 400 to 600 mg for two years and we got back our MMR and currently nearly undetectable.In your case if you could get down under 0.1 PCR then you would be in quite safe territory.I now understand that EBC represents the infiltration of leukemic blasts into areas other than the bone marrow;apparently the most common areas are lymph nodes.bones and CNS (central nervous system) and might affect the PNS ( peripheral nervous ssystem) and there is a condition called paraspinal chlorama.Whenever I have seen an orthopedic they are keen to check if any leukemia is developing in the joints and in a similar way my optomotrist checks the optic nerve for any abnormalities.

I am fairly sure that my hip and buttock pains that flare up every two or three years are related to a sciatic nerve triggered off by spinal narrowing as MRIs have not found any unusual bone growths etc indicating a chlorama.It seems that some tki s are quite hard on the joints and muscles etc in the same way that nilotinib can be hard on the heart if one has a weakness there.

I think the problem we have is that tkis can produce side effects and long term use can like in my case lead to myositis or muscle inflammation and peripheral neuropathy/poly neuropathy which are usually drug induced;however we are correct to be cautious rather than to panic or surmise that there may in a rare instance be something more siinister.I did have some swollen lymph nodes in the neck after three years of treatment which did scare me but as my specialist diagnosed these were not leukemic but did take 18 months to disappear.

I wish you well in your quest to reduce your PCR score and please keep in touch as this forum is good for giving information and reassurance helping to deal with the mental issues;like me you will probably find that outside of hema-oncology other medics still have an imperfect understanding of CML possibly because it is relaitvely rare and also that in the last 15 years treatment options have developed rapidly.

Regards

John