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Mum newly diagnosed

Hi All, first time poster here looking for some help/support/reassurance! 

We have had the most horrific two weeks since my mum had some routine blood tests and since has been diagnosed with CML

She is 58 and otherwise has been in good health, hasn’t had any noticeable symptoms so it’s been an absolute shock. 

We seen the consultant on Friday who confirmed the diagnosis and said the outlook was positive and she will start on imatanib this coming week. Her red cells and platelets are normal and consultant didn’t think he could feel any spleen enlargement. 

We felt quite relieved on Friday and very positive which we still are but I have been reading more and more about stages and phases and now I am out of my mind with worry again. The consultant said some marrow tests still to come back but that my mum should feel positive but I don’t think he said about stage or phase.

Anyway we are back again tomorrow to see him and hopefully come away feeling positive again. I have been reading a lot of the posts here which have been so helpful so far so thank you all for sharing.


Ok, quick reply now and more to follow from me and others later. If you get a chance to look at the "about CML" tab above, click on just diagnosed and then grab a template for your Mum to take to the consultant appointment. That will give you the info you need to start to come terms with this, and to help the people on here understand what is going on.

Bottom line is that very few people will now die because of CML; most of us will die with it, having lived a pretty normal lifespan. I am 61, diagnosed nearly 12 years ago, took imatinib for 11 years and now 6 months into seeing if I can stay in remission without medication. So far so good.

Really sorry you and your Mum are going through this. It is a lot to take on board. Don't hurry, use the site and forum as a resource as much as you need.


Thank you, I have got the template which I will take tomorrow. Thanks for responding so quickly it’s appreciated 

Routine tests are the best way to discover you have CML, because it usually means it’s caught well before it becomes symptomatic. In all likelihood, the imatinib will get it under control nice and quickly and with any luck she’ll tolerate it well and life will just go on. There might be a few bumps in the road, but as Alastair said the vast majority of us will die with CML rather than from CML.


Thank you for your reply, hoping and praying this is the case. 


Hi Sando,sorry to hear about your Mum but try not to worry hopefully the worst bit is over the dreaded bone marrow test that is the worst bit for me. ,I know it's a huge shock when the word Cancer is spoken out loud about a loved one but hopefully she will tolerate Imatinib well .You say she had no symptoms she probably did but just thought they were part of the menopause.Feeling hot at night,not getting a good night sleep ,heart beating thru your ears ,cough or cold that lasted a bit longer than usual and thinning hair .Thats what happened with me anyway.So routine blood test found it in me too about 16 months ago.Imatinib will make Mum feel very tired she will nap a lot she must rest and not try to be superwoman her body needs to heal. ,I gave up work because fatigue was just too much. ,probably have some diarrhoea,people say drink lots and lots  of water but too much just makes you run to the loo more ,Imodium helped when I needed it .She May get a bit of a rash ,I did on my chest and across the back of my shoulders but germolene and vitamin E cream kept the itch away so isn't that bad.Most of us take the advice of Scuba a fellow CMLer on here about supplements to take etc. ,Vitamin D3 is vital to boost your immune system,vitamin K2 ,curcumin with black pepper and magnesium ,read his posts he knows everything there is to know.So just tell Mum to pop that pill everyday without fail maybe in the evening after food rather than the morning so she sleeps thru the side effects ,she will soon feel better .Any questions at all there are lots of people on here only too happy to help.Regards to your Mum ,Denise.

Thank you very much for your response and I hope you are doing well.