Hi. I am a the consultants this week and have been thinking about treatments.
I have been off glivec for nearly two weeks due too side effects. Being off them has made me feel so much better and I have began to think that maybe asking for a bone marrow transplant may be the way to go.
My question is... Can I actually ask for one or does the consultant have to do it.
I would really rather have my CML sorted one way for the other. Is the too drastic?
Hi Gary
Ask, ask, ask! Leave no stone unturned! No, seriously, its so important to make sure you get the opportunity to check everything out. Everyone is different - the journey you are making is a unique one. Medication is the right way to go for some - with or without side-effects, but for others, the prospect of life-long meds is intolerable. The implications of BMT or medication are influenced by variables such as age, other medical conditions etc, but it is always worth discussing - it's your body!
All best wishes
kestrel
Gary
I can't offer you any advice as I am in the same boat ! Can I ask how long you have been taking Glivec for? In my case I was diagnosed in mid January this year, I had a break of a week due to side effects about 2 months or so ago during which time I felt the best I had for years ! I was reintroduced to Glivec and am very gradually increasing the dose. The sharp shooting joint pain I was getting is currently not happening ... unless I over do things. I do have constant tiredness and have a dull heavy sensation that is hard to describe. Constant upset stomach too. I realise this is a small price to pay for prolonged life but like yourself I am considering a stem cell transplant to improve my quality of life.
Kestrel I read your reply, I'm curious to know what Course of treatment you followed ? I intend to discuss my options further at my next clinic.
best regards
Bill Yellowley
Hi Bill,
I care for a 14 yr old with CML - Rio sometimes posts on this site and has just started his BMT. He was diagnosed nearly 2 years ago and started on Glivec after hydroxyurea treatment. His Glivec dosage started at 200mg and was increased to 300mg in October 2007, then 400mg in Feb 2008. Initially his response was good, but it plateaued without getting to a 3 log reduction and the decision was made to have a transplant. He was offered the opportunity to go on a dasatinib trial but declined - he has consistently said that he wanted to have a transplant and get rid of CML, not to be on medication for CML for the rest of his life. On Glivec he experienced the usual side effects which diminished over a few months, but returned with each dosage increase. He was tired almost all the time. The BMT is from an unrelated 90% matched donor. He has had 4 days chemotherapy and is now having 4 days radiotherapy prior to the transplant on Friday. He was a very fit and healthy young man going into this BMT (apart from the CML!) which stands him in good stead. I am utterly amazed at how well he is after the week of treatment he has had, though I know the worst is yet to come before he gets better.
I hope this is the sort of info you were looking for - the short answer to your question is the course of treatment chosen was the BMT, but as you see, the circumstances make a difference.
Rio has a caringbridge site if you are interested in checking on his progress - he is updating it quite often now the BMT has got under way:
www.caringbridge.org/visit/riowilliams
He loves getting comments in his guestbook!
All the best in your quest for the right treatment for you.
Best wishes
kestrel
