Does anyone know how many people there are in the UK with CML? Im wondering what percentage of CMLers have BMT or stay on Glivec or need to have other treatments? Does anyone know how many children there are with CML and perhaps especially, how many children there are using Glivec long term because there is no fully matched BM donor available? We look as though we are in that category.....
Im full of questions tonight! Does dosage of Glivec depend on weight? Our 13 yr old is taking 200mg and looking at some recent postings about effective dosage has made me feel jittery! His dosage was reduced as his blood counts kept drifting down on 300mg. He has just had his first bone marrow aspirate since diagnosis and we are awaiting the result.(Im guessing this is a FISH test?)
I cant believe it is only 3 months since the diagnosis was made as I feel as though we have been living with this forever already! Best thing is that he looks so wonderfully healthy now and has bags of energy after being on Glivec for such a short time. Only side effect seems to be abdominal cramps about 3 or 4 times a day. Do other people have those - I have seen recent discussion about cramps and wondered if these are abdominal or elsewhere? It seems that he is really very fortunate that he doesnt suffer any other effects.
Thank you to everyone who uses this site - I gain so much info from reading your postings and I know we're not on our own dealing with this.
Kestrel
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Statistics, dosages and cramps!
Hello Kestrel
It is good to hear that your 13 yr old has loads of energy on Glivec.
As far as correct dosage is concerned I am not sure of the position for children. Is the treatment under a specific CML specialist? If so I think they will have the experience to deal with each individual case. This is the most important aspect of CML, to be treated in a centre with experienced people in this disease. It's a rare one, and so most hospitals see very few cases. For example in my local hospital there are only 3 patients with CML. That's why I transfered to Kings College, and why others go to Hammersmith and Newcastle for example.
Cramps can affect almost any muscle set it seems, mine are worst in the legs, but can be in the throat - scary - or in the chest. I have found that they are better if I can manage to drink at least 2 litres of water a day, flushing the system seems to help. Do mention the cramps at the next check up just t make sure they are logged with the medical team.
Sorry I can't help with the stats part of your question.
I hope the test results show good results.
ATB
pennie
Thanks Pennie, the advice about drinking plenty of water is good. We have mentioned the cramps several times to the Docs but they dont seem to know why it happens and if it is the CML or the Glivec that causes them. Im trying to pluck up the courage to ask our Consultant questions about how many children she has treated who have CML, but we do attend a specialist children's hospital in a big city and she certainly gives the impression that she knows what she is dealing with! Its not an easy question to ask, tho the answer is very important! kestrel
Hi, I am also on Glivec and I have quite a lot of leg and foot cramps. I was told it is a side effect of the medication. Don't hold back on asking questions, make a list for your next visit. Hope this helps
suzanne