Hi All,
Having been on imatinib for 17 years I suffer especially at night muscular cramps and bone pains which is a normal side effect of the drug.Not a lot has been written about this issue but some researchers have found that the MRI scan of the affected areas dont usually show up much and suggest to keep up Calcium, Vit c and Vit d intake.
I have looking at some very useful videos on You Tube often featuring Professor Tim Spector as a joint contributor about osteoporosis and bone density issues with some interesting conclusions.Apparently having cancer can expose one to greater risks as can being exposed to certain medications.One of the key conclusions is that the risk group is now thought to be in the age group 70 years plus as opposed to other age groups/conditions.For instance it has been thought for some time that peri menopausal people say up to 50 years old are at risk especially if they are on HRT treatments -that area is now quite complicated it seems especially re treatments offered, vitamin deficiency ,risks of breast cancer etc as a side effect from drugs taken and so on.
So my query is that of the relationship between long term exposure to musculo skeletal issues and symptoms as side effects from medication such as imatinib and bone density?
Here in England trying to get a DEXA bone density scan on the NHS is pretty dire at the moment as I guess one has to have a good reason to ask your GP to refer you for this scan-then a 6 month wait..Normally private medical insurance will not fund this scan as a one off so you might be left with a self pay solution only-my local Circle Group Hospital will do a private scan for £170 (4 week wait) but I need to be referred by a medical practitioner -some private clinics in UK dont need a referral but can be more expensive.
Has anyone with musculo skeletal issues from imatinib or another tki had a DEXA scan or ever discussed this with their GP or haematologist??
The Tim Spector general (not CMLrelated) conclusions were interesting:
-beware of relying on supplements like vit d ,vit c and calcium as there are absorption issues with many of these (imperfectly prepared) products-in particulat some trials found that higher vit d levels related to supplement use did not prevent bone fractures in older patients apparently.
-rely on natural products and foods for calcium and vit c and magnesium;rely on sunlight for vit d;lots of veg and fruit and omegas
-exercise in the right way:to preserve bone density short term skipping and giving the bones etc a good jolt is more effective than a gentle long term walk
The big issue is that say at age 80 you have a fracture of the tip of the femur/hip then it is very difficult to recover to walk normally again and if your spine starts to crumble then at best you end up bent over !
Best wishes
John
