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New CML Diagnosis

Hello All,

I'm in the UK and at 50 years old have been very recently (Sept 8th, 2020) diagnosed with CML that was detected after going for a routine eye test that picked up one small bleeds on the back of each of my eyes. I was referred back to my GP for blood tests and hey presto here we are!

Prior to diagnosis I had not felt unwell and had been working out very regularly on a spin bike.

Upon diagnosis I was admitted to hospital and had a WBC of 146 and was placed on medication (Hydroxycarbomide) to reduce WBC. At The end of this phase of treatment my WBC had reduced to 91 within 1 week.

I'm now taking 400mg Imatinib for the past week and so far no noticeable side affects but I know that its early days. In the last two weeks my WBC has reduced further to 41 last week and now stand at 20 as of this week and all other bloods levels are good.

Its been a whirlwind past couple of weeks from diagnosis to starting treatment and being back home popping my daily pill.

Although I seem to have had a very smooth path so far, I'm sure that there will be some bumps along the road and I feel as though I'm almost waiting for something to happen which I guess is a pretty normal way to feel right now.

For the past three weeks I have not been working out as in the first instance I was told not too. however I have now been cleared to commence working out again but as its early days on Imatinib I decided to give this a couple of more weeks to see if/or what side affects kicked in.

I know that everyone is different in response to medication, but can anyone advise on the time after starting medication that side affects would become apparent.... or can side affects appear randomly and at anytime?

The only thing that I have noticed is a tingling/numb feeling down the left side of my back/spine that seems to occur when I'm washing my hair, brushing teeth. I felt this initially after coming home from hospital a couple of weeks ago and put it down to spending a few days in hospital and mainly sitting/laying around all day. Has anyone else had this tingling/numb feeling?

I'm currently away from work but doing bits from home, however I'm hoping that if I still feel as well as I do now at the end next week, I can think about returning to work and start work out again (although a slow build up). 

Thanks in advance for any information that you may be to offer.

Hi there, and welcome.

I was diagnosed after eye problems, like you.

Many people don't get noticeable side effects from the TKIs and do totally fine. You'll find that they don't regularly post on the internet about that, they're just busy getting on with their lives so when you do read this forum or others like it, remember that! Hopefully you'll be one of the lucky ones.

In general, I think people find the side effects fairly quickly. I got some serious bone pain and neuropathy and that kicked in after about a week on drug I'd say. But some other side effects can take time to manifest - you might not know it right away, but things like kidney function can be affected which takes time to accumulate. But your blood tests will be looking out for that kind of thing.



Sorry to hear of your diagnosis. And welcome to the club no one wanted to join (must think of a new tag line)

All that you have described is perfectly normal for a CML Diagnosis.

Like you I started on the Hydroxy straight away wbc of 330. I started a dose of 4 pills a day which did nothing was then increased to 6 pills then the wbc started to fall pretty nicely to eventually after 3 anxious weeks of wbc of 14. The consultant was worried it may go too low but thankfully it hung on that line.

Was then started on Nilotinib been on that for 2.5 years bloods been perfect for all that time and bcr levels are stable almost MMR, various symptoms but some rear their heads after sometime even a year or more but they’re negligible. Fatigue can be an absolute bitch at times and is common of all TKI. Pretty much the 1st 6months I felt nothing expect some bone and joint pain in my neck and shoulder blade areas and 1 forearm, skin changes (small red bumps), soar scalp, dry eyes to mention a few. That subsided quickly and is way less noticeable. Ironically CML didn’t give me any of this prior to pills, just the massive spleen, weight loss and night sweats. Had more energy then that I do now but hey ho I am alive and kicking haha.

Exactly take your time try not to freak out although at times you will while your body and more importantly your mind adjusts to your diagnosis.

Dont be afraid to reach out on here we are a nice bunch and know everything you are going through.

As I did you’ll see all the worry you have now is unfounded. Exercise, eat well and rest the best you can.

Like most you’ll be fine, hard to believe but you will be. That part you learn over time.

All the best


Thank you for your message David.

It's certainly strange how much an eye examination can determine!


Hi Alex,

Thank you for your message and good to read that you are doing well (other than the side affects).

I have been reading through the forum posts and was a little apprehensive about joining but glad that I did.


Hi Jayson 

Great to meet you on here.  I joined 14 months ago after my diagnosis following a routine blood test. But looking back I had most of the classic signs but put it down to my 55 years and working hard. 
It’s been a roller coaster of emotions but this site has been fantastic with regards to support and there is a huge amount of information and content to help and consume. 

like you I am also on 400 mg daily of imatinib and responding really well to the treatment. My main issues are bone pain and cramps with tiredness and fatigue. It comes and goes but indeed is better than the alternative! 

Let’s hope you are one of the lucky ones with no side effects. 
Reading and researching on CML has helped me in this journey and especially in engaging my specialist

The experience and medical expertise of the forum members is a fantastic help in putting jargon into plain English  

Great to meet you and stay positive and healthy 



Hi Mark,

Good to meet you on here to and great to hear that you are responding well to Imatinib.

Although I didn't show classic symptoms prior to diagnosis, when looking back I had felt a bit tired and had the odd night sweat but put it down to getting a 24h virus and working just like yourself.

I certainly have lots to read and understand about CML as I'm only three weeks in to my new journey but have already learnt information from other posts on this forum and glad that I joined!

Stay safe, healthy and have a great weekend.


Just give you a quick review.  I've been on all three TKIs.  For me, Imatinib causes internal bleeding, eyes, mouth and stomach, as well as reduced kidney function.  Dasatinib makes my heart beat like a drum.  So far, Nilotinib seems suit me the best, no known side effects.  About the effectiveness, Imatinib get my PCR down to 0.11, slight above MMR, but can not go down further.  Nilotinib reduced it to 0.017.  Can't comment on Dasatinib, because only had it for three months and I could not continue because of the heart problem.  I hope it helps, Good Luck.

Thank you for the information.

Sorry to hear of the side affects that you experienced on Imatinib but it seems as though Nilotinib suits you well and hopefully will continue to do so.

I have been on Imatinib now for just over three weeks and my WBC count is down to normal levels and controlling well and all other bloods results are looking good.

so far no noticeable side affects so I’ve been able to return to work and get back in to a routine.

Still early days but I seem to have had a great response to Imatinib so long may that continue!