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My CML Experience

I was diagnosed with CML 18 months ago after an extended period of feeling extremely unwell.  I had an enormous spleen (23cm), I was in pain and hardly eating anything because I literally couldn’t fit anything in. I was lethargic, short of breath and I was sleeping a lot.  From memory my wbc was 375,000 and I was considered high risk. 

So the reason I let it get so bad is I have a severe needle phobia and a general fear of all things medical.  My haematologist is a very patient but frustrated doctor  because I can’t be tested. No one is willing to put me to sleep to take blood.  The two blood tests I’ve had were unbearably traumatic and it gets worse each time.

On top of that, unfortunately I’m extremely sensitive to medication and I’ve managed to get most of the side effects on three different TKIs.  As well as debilitating headaches, fatigue, bone pain, muscle cramps, nausea, diarrhoea etc, etc, I was suicidal on Dasatinib, deeply depressed on Imatinib, and had the worst anxiety on Nilotinib to the point of crying and sobbing nearly all the time. Before all of these drugs I was an emotionally stable person (as long as I stayed away from doctors and needles!) and when I take a break from the drugs I return to an emotionally stable place in spite of my fear that CML is going to take me from my beautiful family.

18 months on I’ve hit a wall. I feel crushed by the weight of it all. I have stopped taking tki’s to clear my head, get some space and take some big deep breaths. Words cannot describe the relief of feeling like me again. My kids are enjoying having an engaged mother again but my husband is understandably worried.

I feel completely isolated in this journey.  My friends and family have found a new rhythm to life while I continue to live this nightmare. I don’t really have any questions but would welcome any words of advice or stories of those with similar challenges. I guess I’d like to know I am not alone but I have grave fears that I am.

It has taken a lot of courage to post this so please be kind.

Have you tried hypnosis to help with your fear of needles or CBT The help of a good therapist may be what you need . I have CML and I am ok usually with needles but I can empathize I had a period while trying to conceive had daily bloods and I was starting to get nervous about it after a week . Take care .Jacqui

I don’t mean to be unsympathetic to your fear of needles and disliking the taking of proven beneficial drugs (tki) but in my case 5 years on from being diagnosed, I am eternally grateful for the discovery of these life saving drugs and even more grateful for the care given to me by the doctors and nurses who care for me, the needle situation is a 2 second situation which is beneficial to your quality of life. Close your eyes, focus on something in the room, job done, promise you it’s done! Pete 

HI, I m so glad you are feeling better.After seven months diagnosed with CML and I was doing ok with Imatinib 400mg a day.I went to visit my mam during vacation ,when I came back to the state I had cold and flu I went to my primary he check my spleen maybe he touched very hard and he said I have enlarged spleen.I wasn`t feeling any pain before. now I feel my left side painful and heavy and I sleep too much wich my husband didnt like.I feel very sad I thought my CML going to be fine ,but my life not good any more I can`t work like before ,I cant do anything normal.:( I don`t know what to do.



Hi there,

Your symptoms at diagnosis are identical to me! I wouldn’t say i am extremely sensitive to TKI as I’ve only just approached shy of MMR at month 18 @ PCR 0.118%. I have had symptoms mostly in the early days but I don’t have anything debilitating at all compared with others.

A CML friend of mine told me their are 3 types of responders.

1. Those who respond very quickly but unfortunately have a lot of hard side effects

2. Those who respond slower and have many plateaus but have little to no symptoms 

3. Those who respond but their numbers jump all over the place.

At this point you are probably 1 and maybe I am 2. Or maybe too early to know for me.

But back to your brave post. I hear you with the fear of needle thing, I really struggle with needles but there is no getting away from the need to have blood drawn. I am not proud to say I nearly black out at every PCR blood draw! I mean 8 tubes of the stuff feels like a bloody lot. No pun intended! It’s difficult for me to say this because I get very little symptoms but you must take your meds otherwise you’ll eventually have greater health issues I don’t care to mention. Maybe you could try another switch? I assume you are MMR. Or even less than 1% in terms of overall survival is the same as MMR as I am sure you know.

Ive suffered with anxiety for as long as I can remember so getting this in the earlier days I was a complete car crash. The only thing that’s brought me back is meditation and exercise. If I keep that up I am fine. If I stop for an extended period I am back to mr anxious. I also have counselling with a top counsellor in London I figure the cost is worth it.

I feel for you because you can feel so bloody alone having this thing. And even though statistically it says you live a long life it doesn’t always mean a good quality one. We must find ways to cope. Maybe even a dose reduction would benefit you if you’re stable MMR?

Feel free to message me anytime we all get how you’re feeling and I can assure you you’re not alone even though it feels like it.

Wish you all the best.


You have my sympathy, I too have an in-built fear of needles going back for as long as I can remember.

I was diagnosed November 2017 and spent a week in hospital feeling like a pin cushion, as well as various drips in my arm I had a blood test every day and I managed to pass out during one of them. You are not alone with your fear or with your CML journey.

Unfortunately there is no way to avoid blood tests with this, you really must face your fear head on as these have to become a part of your new normal life. Could you not explain to the phlebotomist about your fear and ask to lay down while the blood tests are done? I find concentrating on my breathing and trying to focus on a picture or something on the wall helps me and it really is over within seconds.

It is so important to take your medication so you should see your Oncologist and work with him/her to restart the tablets. Maybe it would help to speak to a counsellor to help you work through the anxiety and any side effects you are having. Sometimes you must give your body time to adjust to the medication.

I have found that everyone on this forum has helped me feel less isolated and reading everyone’s posts is very comforting just knowing that there are other people having the same fears and worries as me, I hope it helps you too.

Best wishes


Thank you for the responses. 

I have sought help from various professionals over the years to deal with my phobia and at best, only ever achieved tiny improvements that didn’t impress medical people! I am currently seeing a psychiatrist who describes my fear as morbid meaning I would rather die than be tested. She believes I need to have a general anaesthetic but I can’t find anyone willing to do that for a blood test. 

Imatinib, Dasatinib and Nilotinib are the only tki’s available to me in Australia. The side effects are all unbearable. I’ve tried very low doses eg. Nilotinib 150mg alternate days but It’s horrible. On these drugs I have no quality of life. Apart from the common side effects, I feel drugged all the time, like the feeling of waking up from a general anaesthetic. It’s no life at all.


This sounds like a very severe needle phobia, indeed. But of course to manage your CML your must be tested properly. 

I can completely understand why a doctor would not undertake a blood test under general anaesthetic. The risks are unacceptable, I suppose.

Have you looked at something like the products from this company:

They claim they have a blood extraction solution that does not use needles. Effectively, it vacuums the blood out through your skin delicately. It would leave a mark, much like a love-bite or hickey I would imagine. But at least there’s no needles.

I imagine this is the most expensive way possible to draw blood, but maybe worth talking about with your doctor?


Yes it is an extremely severe phobia.  It seems I’m in an impossible situation.  

Thanks for the link.  I will definitely look into it to see if it’s an option for me. 



As others have said, I think your post is very brave.   I completely understand the fear and anxiety that come with living with CML and blood draws.  I am only 6 weeks into this journey and have cried on each drive to the clinic and during each blood draw not because of needle phobia but because I’m still adjusting to my new reality.   I gave up caring what the phlebotomist thinks, and to be quite honest, they’re all very sympathetic. I think at least 100 people have watched me crying while walking into and out of that place...But my therapist keeps telling me to do whatever it takes to get myself through this one step at a time and if crying during blood draws is what it takes then so be it.  

Like Alex, I rely a lot on exercise and meditation.Missing even one day puts me on edge.  

Some days the emotional pain and anxiety  seems too much to handle, but ultimately I have three daughters who need me to live, so I focus on that, put (drag) one foot in front of the other and keep pushing forward.   It’s horribly difficult at times I get it, really.  I’m not at all downplaying what you’re feeling.  Sounds like you’re seeing a therapist and that’s great.  Maybe he/she can give you something for anxiety on blood draw days?  

I have weekly blood work but soon enough it will be a lot less often.  Is it possible to bring someone with you to keep you distracted? My husband is great at acting a fool in front of nurses and causes a big distraction.  :)  it does  help and the actual needle part is so quick.