New diagnosed CML

Hi,

It sounds like you were fortunate to catch it early - was it picked up from a routine blood test, for some other purpose? Do you know what your white blood cell count was, when diagnosed, or your BCR/Abl figures? No worries if not!

It's fantastic that you feel well enough to go back to work already. Many months later, and I have only recently managed to get back to work part time (34 yrs old).

In terms of "Can I continue to just have a normal life?" the answer should be pretty much "yes" ... obviously you'll be restricted on when you can eat on nilotinib, and you may have had your last grapefruit - but assuming you have a good response to nilotinib in terms of BCR/Abl levels, with any luck the most challenging thing you will find are the eating schedule and the difficulty in getting reasonably priced travel insurance! Obviously the caveat here is that everyone is different, but assuming you respond well - and there's no reason to think you wouldn't - it will eventually settle down to just popping a few pills in every day. The one thing I often think about being diagnosed with CML is that it's terribly unlucky to have it, but the timing is extremely good! 20 years ago things looked bleak, whereas now there's every reason to think patients will live out a normal life expectancy.

Some people do develop side effects to their medication, minor things like rashes are quite common but are almost always easily treatable. And for the side effects that are worse, or don't respond, you can (like I did) change from one medication to another to see if that helped (it did). Even just a few years ago that wasn't an option - so who knows what kind of options we will have 10 more years down the line.

All I can recommend is to read, and read, and read. The more knowledge you have on the disease the more in control you will feel. The videos on this site (see the link on the left of the page) are great, and the book "The Philadelphia Chromosome" is very good and will teach you the history of the disease, although some might find it a little sciencey at times 95% of the material is in plain English. You'll have loads of questions, so write them down as you think of them (I keep a running note on my iPhone with questions that I jot down as I think of them) and that way when you come to ask them either here, or with your doctor you won't forget what it was you wanted to ask.

Anyway, I am glad you found this group - people here have been around the block with CML, so will be able to answer nearly anything you want to ask!

PS. Where are you being treated?

David.

Thank you very much David and Karen, Thank you for your quick reply. Yes as most of us, I guess, I just had a simple blood test done and my WBC was at 63’000. I could see that the Doc, was worried, they tried to get me an appointment as fast as possible with a specialist and 3 days later it was confirmed, I’m Philadelphia Chromosome positive and my bone marrow test confirmed this a few day later the fact that I have CML. Leukaemia is a very scary name and I didn’t sleep for almost one week, thinking if my kids would grow up without their mum... My doctor was from the beginning on very positive, he thought that we got it very early. As I sad, I’m on nilotinib now for over 3 weeks, the first week I had very bad muscle pain, so my doctor lower the dose for one week and now I’m back on 600mg a day. I feel a little tired but apart that nothing changed for the moment. Yes it is not very practical to take this medication, I set myself an alarm clock at 6am than sleep until 7am and in the afternoon, I stop eating and drinking (other than water) from 4pm on. As my husband says, it is a little bit annoying, but certainly better that death. So, I don’t have a lot to complain, but I still don’t understand what is happening. Maybe I just need some time to adopt to the situation. In 3 month, I will make another bone marrow test and we see if the cell number went down. In my blood there is nothing left after 2 weeks of nilotinib. Thank you also for the advice of the book, I will get it. I would love to come to one of your meeting, but we leave on the other side of the world, Singapore, since 2 years. We will move back to Europe in march, the medication is not paid from the healthcare here, so we will not be back in a few month. I’m Swiss but my husband is English, so I will try to join you next year for a meeting. This website looks really nice and it helped me already a lot time when I couldn’t sleep at night... I still have a lot of questions: I’m I going to have a normal life? For how long? Will I see my children grow up? Can we get cured of cml? Is it a ticking bomb inside of me... I know that we never know what will happen in life, but it is scary!
Also; a more practical question, is it ok to have a glass of wine from time to time or is the reaction with the alcohol and the medication very bad?
Thank you again for your nice comments!
ece

Thank you very much for your respond!
How are you doing? How is your experience with CML, the medication, etc.