I would be interested to hear if anyone else in the community has heard of any link between CLL and Osteopetrosis - "Marble Bone".

[jiajia]

'Marble Bone' is usually a congenital problem as far as I am aware. Mine developed soon after CLL was diagnosed and midway through FCR treatment. It would be interesting to know if it is simply coincidence, or related to CLL, or even stimulated into action by the treatment. I had assumed that my increasing aches and pains were osteoarthritis, but I have something else to blame now

[milton]

Never heard of this condition but since my first chemo finished I have really bad joint and bone pain which I put down to fatigue. I've also thought that the chemo may have kickstarted some osteo-type condition. Thanks for your post.

[jiajia in reply to milton]

A good indicator (for me) was increasingly difficult bone marrow biopsies - for me and the doctor !

[milton]

Oh no! Those things are bad enough! I must do some digging about online and see if I can find anything out.

[HAIRBEAR_UK Founder Admin]

Members here may be able to provide some feedback. there have been many discussions through the years in different CLL groups about bone issues .

This is a Macmillan information page about bone health and cancer treatment, this covers the usual. I have been unable to find any that relate to osteopetrosis. macmillan.org.uk/Cancerinfo...

[jjiajia I have edited my earlier post error that was relating to osteoporosis not osteopetrosis,I misread your post I am looking forward to my new glasses arriving]

My question wasn't really relevant as it related to osteoporosis as a result of treatment. I understand steroids are used in osteopetrosis to try to reverse bone density and growth. Sorry for inconveniencing you

[jiajia in reply to HAIRBEAR_UK]

Thank you for taking time to respond . Yes, I had a course of IV methylprednisolone earlier this year, and have just started another now, but the change in bone density started before that, and is bone hardening rather than losing density as in osteoporosis. My consultant thinks It may now be causing a reduction in the space available for marrow and that is full of rubbish at the moment, so I am transfusion dependant. Some types of Osteopetrosis (if that is indeed what it is) can be cured by transplant, and that is what I am heading towards at the moment anyway with fingers and everything else crossed, so keeping positive.

[HAIRBEAR_UK Founder Admin in reply to jiajia]

Sorry misread your post as Osteoporosis not Osteopetrosis (my new glasses arrive on the 2nd)

Yes the information I posted above relates to associations with bone thinning rather than hardening sorry.

Thinning is the only CLL treatment association I can recall reading about unless others who have been reading the forums for longer have other info?

I am sorry to read about your case I did read up on it patient.co.uk patient.co.uk/doctor/Osteop... how long have you had the condition identified?

Good you are keeping positive

Nick

[jiajia in reply to HAIRBEAR_UK]

Hello again. It was the first scan after FCR last year that identified an 'abnormality' in bone structure which the radiographers couldn't really understand, and as I mentioned earlier BMBs get progressively more challenging.

I imagine it is just coincidence that it has appeared at around the same time as CLL, and the treatment, but wondered if anyone else had come across a link.