Hi all
My husband was diagnosed on Aug 26 2017 CML he has been on gleevec for the past couple of months .. he's been complaining of joint pains which is affecting his daily lifestyle . I have told our doctor about this , but it doesn't seem to be a big concern? I have read on these forums that there are stuff that can be taken to help with these issues. Would appreciate any feedback Please... also does gleevec dosage every changed after a 3 months period? he's presently on 400mg twice a day
Hi and welcome so to speak to the group. Muscle, bone and joint pain are quite common with Glivec, especially early on, for many it does settle down. I used magnesium spray for muscle pain, which seemed to help, and have for many years taken 500mg daily of glucosamine sulphate for joints, knees etc as I play a lot of squash, I feel it helps, as do many other people I know, no real proof.
However, the biggest thing I would say is his dose, at 800mg Glivec, this is twice the “normal” dosage, which is 400mg of course, once a day. Some do take higher dose for differing reasons. Why did he get put on 800 would be my first question, and if no real reason, then I would want to discuss reducing to 400mg as this would very likely make a big difference to his pain, but little difference to his long term depth of response, presuming he has a normal chronic phase cml diagnosis. Hope this helps. Nigel
I would like to repeat what Nigel has said. Why 800mgs? 400mgs is the normal dosage for Imatinib/Gleevic. If you don't know why 800 was prescribed I would ask your consultant. It may, of course, just be for starting out and the dose will be reduced to 400mgs after his next visit. And yes, pain in bones and joints is a very common side effect. along with puffiness around the eyes. The bone and joint pain may reduce once the dose reduces. However, the good news is that CML is very manageable for most of us so try to keep positive.
Best
Chrissie
Hi, Nigel / chrissie
Thank you for the response
We will definately look into the magnesium spray ... thanks ,
I'll give you some info on his bone marrow report... upon being warded on 25/8/18 his WBC was 194 Hb10.5 Plts 743 they rule out (suspected CML??)
On 28/08/17 a Bone marrow aspirate was done and send abroad for testing since we don't have that lab services available in our country
Results as follows:-
Differential (500 cells):
Myeloid 81.8%
Erythroid 1.2%
Lymphoid 4%
Plasma cells 0.2%
Blasts 12.8%
While he was warded his blood count were dropping further checks / testing found 3 peptic ulcers and was being treated with that also .. he was put on Hydroxyurea, then started gleevec 5/9/17
at some point he was on hydrea and gleevec to help bring the bloods back down , once doctors was satisfy with his bloods , he was then put on Gleevec 400mg twice per day. We have now reach 3 months and second Rt-qPCR test (Bloods) was send abroad for testing awaiting results... I did asked the doctor yesterday about such high dosage (as you suggested) I was told based on the BCR abl only then they can look into changes his dosages
Theses are his Bloods results as of 20/12/17 :-
WBC 6.18
RBC 4.37
PLts 282
Please feel free to share any advise / suggestion I really do appreciate all the support
