Hi all,
Delighted to find this forum.
I was diagnosed 4 months ago. My BCRABL % at diagnosis was 46.3. After 3 months its 18.8 which is higher than the target my oncologist gave me (10). I am getting another test done early march and before I meet my oncologist again I want to know what i should be asking / advocating for.
Im in my 20s and am only getting over the initial shock of the CML diagnosis now.
Any advice welcomed
Sarah, young people typically don't respond to TKIs nearly as well as older people. The most important thing is your BCR-ABL trend is down. It may take you a little longer to reach the milestones along the way but you will get there. You didn't mention which TKI you are on but you may respond similarly to all of them. CML is an older persons disease with the average age of the people who contract it is in the 60's.
Good luck to you; try to be patient and try not to worry,
Buzz
Sarah very sorry that you have joined this club at such an young age, but it likely means that you will be a member for many decades!
As Buzz says your initial trend is down, so the imatinib is working. I was diagnosed aged 50 which was 17 years ago, and we didn't worry in those days about hitting targets of 10% at 3 months etc., as the targets didn't exist. I took nearly 2 years to get to MMR and am still well 15 years after that.
Under the "About CML" tab on the ribbon above you will find a just diagnosed section. One of the most useful things in there is a list of questions for you to ask your consultant. I'd suggest you print it out and take it with you, and don't apologise for the time it will take to get the answers you want.
You don't mention side effects which is good; if you have any issues with those there are people on this forum who have had most of them and can help.
Good luck and let us know your next result and what the oncologist says.
Hi Sarah,
Sorry to hear that you had to join our little community at such a young age!
I just wanted to share some hope with you as I was also on the younger side when diagnosed, although a bit older than you at 36. I was also slow and, although I hit the three-month milestone, it took over two years to hit the milestone of MMR. It's now 8 years since my diagnosis and I'm still here! Another CML friend of mine who is the same age also took forever and still hasn’t got below 0.1%, although he is really close. So don’t worry too much about missing the targets – as Buzz says, younger people tend to respond more slowly and the trend is your friend!
One thing I’ve learnt from this condition is that there is a reason that they call people in hospitals “patients” as patient is most definitely what we need to be! Waiting for the numbers to drop seems endless and it’s so scary, but with patience it can and will, in the vast majority of cases, be overcome.
My ride was challenging as I twice developed side effects from the treatment, and both times I was told I was in serious trouble. My stories are all over this forum and the community here was so caring and helpful during those times, so you definitely came to the right place.
To share some more encouragement, even though I was such a slow responder, I reached a point where the side effects forced me to stop the medication and for the past 18 months I have not taken any TKIs for CML. All this gets better with time, and I’m sure in the not too distant future you will see this happening for you too.
Hang in there!
Best wishes from South Africa
Martin
