Feeling very scared :(

I think everyone feels scared at the diagnosis. At one stage I, too, was crying a lot and eventually I had a short course of anti-depressants, which helped me get through a bad patch. Since then, I've had very occasional bad days, but they do pass and get less frequent as time goes on.

For me, knowledge helps a lot. I found the book 'The Philadelphia Chromosome" by Jessica Wapner added to the things I have learnt from this and other websites. It's not all easy reading, gets quite technical in places, but by the end it is immensely cheering and powerful.

The most any of us can do, really, is hang in there and keep taking the pills. You are not alone and things will get better.

Olivia

Hi Moirah,

It's really normal to be teary and upset after your diagnosis. It's a big deal and it's very scary. It would be kind of weird if you didn't find it so.

The good news is it does get easier for the vast majority of us. Much easier. Like others, I had a tough time following my diagnosis, both physically and emotionally. However, over time (and for me it was not sudden, it does take time) things ease. I got more comfortable with my disease by learning about it (the book Lucas recommends gets the thumbs up from me, too) and understanding more and more about it.

It did take me a good while to be more relaxed about it. But 2 and a half years later, I can honestly say I rarely think about it and go about my life as usual. I've got to the point that I can hardly remember taking my pills - it's sort of an autopilot reaction now. I get worried that I'll moss a dose (I've never missed one) so I have an app on my phone that makes me 'check off' that I have taken it at the right time.

So, don't be too hard on yourself. Understand that this IS a scary time, because so much is unknown to you right now, and you haven't had a chance to settle into your "new normal". Over time, you will I am sure respond well to treatment. Once that starts to happen, and life becomes more predictable again (we all like to know what's going to happen next!) you'll start to get much more comfortable with what has happened, and when you get used to it you will stop worrying so much and you will feel much better about what is going on.

You mention "fear". Mostly, I think people fear the unknown. Don't fear this disease too much - it's not great to have, by any means - but we have fantastic treatment options available to us. So my best advice to to learn as much as you can understand about CML and that will help remove some unknowns for you and help reduce your fear.

Never be sorry for "bugging" people here. This kind of thing is the reason we are all here so everyone will be happy to help as much as they can.

David.

I found it got easier once I'd seen progress against the disease by the medication. Most of us enjoy a (relatively) deep and sustained response and maintain a level of comfort by knowing the CML medications are holding the disease in remission.

It is a shock and whirlwind in the early days, it's OK to be upset, but there are many reasons to be positive.

Do you know when your first FISH or PCR test result is due?

Chris

When you get which tests done depends on where you live, and what doctor you see. There are a few schools of thought. But you will certainly have had blood tests done already which will show at the very least things like your white cell count, platelets etc.

A FISH test is done on your bone marrow (have you had a bone marrow biopsy?) and effectively counts which cells have CML, and which ones don't.

What you'll see people call their "PCR" is a blood test to look at the ratio of healthy cells vs CML cells in their blood. This is expressed as a percentage. So when you see people saying their PCR is 0.01% that's showing a great response. Many of us start off with really high ones (I was over 300% at diagnosis).

If you haven't seen any test results, you should ask your doctor for whatever test results they have. It'll help you understand CML better.

David.

Thank you Sandy