This is my first posting and I am sure there is probably information already on this subject,so forgive me if I am being repeatative.
My 11 year old son Jack was diagnosed with CML in February 2007. He was commenced on 400mg Glivac in May. He takes this with his evening meal. However for the last 2 weeks he has been distressed with limb pain shortly after taking the drug. This is eased by Ibuprofen but I am open to any other suggestions please.
Many Thanks. Trish
Trish
Sorry to learn of your young son's diagnosis. My son, Max was diagnosed four years ago and was treated with Glivec. He too suffered from painful joints and we used to give him Glucosamine in liquid form. That was some time ago, but it might be worth discussing with Jack's consultant.
Wishing you all the very best
Parmjit
Trish
Max began Glivec in July 2003 and it was in February 2005 that we were advised that he not managed to achieve a 3 log reduction. We were asked to consider other treatment options, BMT being one of these. We consulted widely and were also referred to Professor Irene Roberts,Paediatrics Haematology at St Mary's London. It was after this meeting, Max decided to take the BMT route.
Treatment options may be influenced by the Consultant/Specialist Centres that is involved in your son's care so I would always advocate seeking opinions from other specialists. This website is also a great source of help and support which I, like others, have relied on frequently.
Best wishes
Parmjit
Hello Trish
Sorry to hear about your son. We have quite a few parents of children with CML who contribute to this site and who will be able to offer you support and as Parmjit says you will get a lot of information from those of us who have been on this CML trail for longer. I would like to echo Parmjit's comments on the treatment centre/consultant/specialist. Where is your son being seen right now ?
Good luck and best wishes.
Elizabeth
Hello Trish,
I am a foster carer, looking after a 14yr old lad with CML,(known on this site as Rio) diagnosed Aug 2006. He is on Glivec too, taking 200mg, tho he started on a higher dose. Response seems to be in line with what our Consultant expects at the mo, - we are awaiting the results of the latest bone marrow aspirate later this week. For a good few weeks at the start he had frequent limb and joint pains, and took ibuprofen, paracetamol and codeine - the codeine seemed to be the most effective (childrens liquid version). We were told he could take all 3 if necessary as they work in different ways. The pains gradually eased off after some weeks and now he rarely experiences any pains at all, just very occasional stomach cramps. His energy levels are as good as any 14 year old and he lives a very 'normal' life, playing football and bike-riding - in fact he's rarely still!
I have logged on here almost daily since I discovered the site. CML is so rare in children that it is easy to feel quite isolated. We do not know any other CML patients in the children's hosp we attend so this website has been a huge source of information and support. You will meet many inspirational people here!
I hope Jack's pains ease soon.
Love, kestrel
Hi,
thank you for your replies and support, Jack's pain is being treated with the ibuprofen but being a born worrier I am concerned about the effect on the stomach.
We are very happy with the care that we are receiving in Manchester. It was originally planned to give Jack a BMT in May. However after our consultants did some national networking it was decided to commence Glivec. Jack has reached his haemological remission in 3 weeks. We are awaiting the results of bloods sent for cytogenetic testing.
Could you please make it clear to me as to what is the difference between the genetic testing they do on a blood sample and that of a bone marrow specimen?
Look forward to your replies.
Love Trish
Hi Trish
Glad Jack is under a specialist CML centre. The cytogenetic test measure the level of PH chromosome in his marrow. They look at say 25 cells and then give you a percentage of how many are still PH+. This test is usually done with bone marrow cells. When he gets to PH negative ie 25 cells out of 25 are negative for the PH chromosome, they will start monitoring him by PCR test which is done with peripheral blood. You can read about PCR testing under our FAQ section.
Hope this is clear. If you want to ask anything else please do not hesitate, this is what we are all here for.
With best wishes
Elizabeth
Hi Elizabeth,
Thank you for your reply.
How frequently would you expect bone marrow asprirations in the first year on Glivec.
Regards Trish.
Hi Trish
When first diagnosed and starting Glivec I would expect 3 monthly bone marrows until Jack reaches complete cytogenetic remission ie 0 PH+ after that it depends on centres but PCRs are carried out every 6-8 weeks. All this varies on what is happening to the patient etc... but it is a guideline.
Best wishes
Elizabeth
Hi,
Rio has a bone marrow test every 3 months. It is a little frustrating waiting for the results as they take about 3 to 4 weeks to come back. We are actually going for results this afternoon....
Love Kestrel
Hello Trish im Rio and im nearly 14 yrs old. I was diagnosed last August 2006 and iv been on glivec for 10 months. I used to get a lot of achs and pains but i used Paracetamol, Ibuprofen and Codeine sometimes all at once to get rid of the pain. :] After a few weeks the pain starts to ease off. I dont get them any more :]
Good Luck Rio :]
Hi Rio,
Jack has been on Glivac for 8 weeks today.The pain has been present for the last 3 weeks. It's as if the level of Glivec has built up in his body. Could you hazard a guess when it eventually faded for you e.g 2, 3 or 4 months.
Hope eveything is going to plan for you.
Best Wishes,
Trish.
