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CML Stories


Hi everyone! 

I am very new to the CML life, I was diagnosed in April 2021, previously very healthy (never smoked, did drugs, or had alcohol, worked out everyday, eat plenty of fruits and veggies) NOBODY in my family has any kind of cancer so the diagnosis is quite the shock to me, I feel very betrayed by my body, like I should've been eating chocolate cake this whole time if I was just going to get something as scary as cancer anyways. I find everyone's stories very comforting and was hoping everyone could share a bit with me about themselves! Things like your age at diagnosis, symptoms that led to your diagnosis, how long you experienced CML symptoms once treatment started, how long you experienced symptoms of your treatment, how long it took you to come to terms with everything and feel normal again? 

I am a 27yr old female, I was diagnosed when I went to the doctor complaining of severe muscle pain (has this happened to anyone else?), I also started experiencing night sweats, lost 10 pounds and two lymph nodes were a little bigger than usual, since I am just barely two months into treatment the only thing I have really noticed is more of an appetite, and I have gained back the weight I lost. I still get night sweats (so annoying). I am on 400mg of imatinib and I noticed my skin is itchier than usual and my hair is a bit thinner (does this get better with time?) I feel very sad most days, I just want to feel normal again, and I am very grateful I found this forum to talk to all of you. 

There are a few of us that were diagnosed in our thirties but 27 is not far from that.  I was diagnosed almost 4 years ago at 37 years old.  I had a strange symptom of what looked like fluid retention in my legs.  One day I took my socks off after work and it left a mark where the socks had been and almost like a bloated calf above that.  That seemed very strange and I went to emergency room.  I also had a couple of bruise like marks that I thought were insect bites and/or infection.  My WBC was higher than most at 258.  My WBC returned to normal shortly after and TKI response has been good.  The sad reality is that cancer does not discriminate.  Thankfully this is a treatable form and I hope you get a very good response on Imatinib.  Welcome, and this forum is a great source of information and/or encouragement.  

I did lose some of my eyebrows on TKI treatment but they seem to be coming back.  

The hair thingy didn't get better for me but it didn't much matter.

This may sound weird but as far as getting leukemia goes... You won the lottery! No invasive treatments or long hospital stay or lifelong immunity issues or prolonged chemo. Just one little miracle pill. Can i ask why you feel sad?

I felt somewhat more normal about 3 months after diagnosis. During that time i moved countries 3 times, which was honestly hard. By September (4 months) i was wandering around southern Europe living out of a suitcase. I journalled regularly the whole time, for 18 months after diagnosis, you are welcome to read it if you have nothing better to do ;)

I feel sad for many reasons, cancer at any age but especially in my twenties is a bummer, especially when it’s for the rest of my life, being the only one in my entire family with any sort of cancer makes me feel like a bad egg, worrying about skin reactions or resistance to the medication sucks, having to plan any pregnancy’s around it or having the cancer return while pregnant is just not something I ever thought I’d have to worry about. It just feels like a lot to process while still experiencing symptoms, does it not make sense to feel sad? 

It does make sense to feel sad and worried. We all do from time to time. It does get easier. Your symptoms will go away and TKI side effects diminish significantly for most people. As far as being young and not in the family trend that doesn't make a lot of sense because nobody knows what causes CML. It is also not hereditary. I went like 23 years without getting so much as a cold before being diagnosed.

Just don't skip doses. Vitamin D3 and K2 are recommended (many threads about it). It's natural to have a lot on your mind initially but I can say that it gets easier.

I was diagnosed at 37.  I am also the only one with cancer in my family (two grandmothers are still alive-  one is 102).  I ran 6 miles a day and felt so strong.  While traveling overseas, I felt my lymph nodes swelling and tingling in my legs.  My WBCs were not as high others diagnosed (around 45k).  At first I was SO positive about CML and working through it… but then I started not responding as strong to TKI.  My slow response to the TKI really discouraged me and gave me so much anxiety about mutations.  At two years I am barely at .09%.  I still think about cancer everyday.  I had a UTI that kept coming back and odd, random, pains that I cannot attribute to anything.  I have bouts of insomnia and a reoccurring  dream I have a car crash down a cliff with no one around.  It is ok to have anxiety and be sad after a diagnosis like this.

I think it is good to talk with a phycologist and work on mindfulness techniques.  I take anxiety medication (lorazepam) when I know my mind is spinning in circles.  It is addictive so I only take it as needed.  I have debated whether I should go on antidepressants.  I have asked my oncologist the same questions over and over again because I need to hear that I am ok.  I feel like it is getting easier, but it is still a rollercoaster.  Some days are better than others and it strongly correlates with pain.

The only thing that really gives me peace is that I trust my oncologist and he is positive that new treatments and research will make even harder cases more manageable.

It is normal to feel sad/anxious after diagnosis and it is totally ok to ask for additional mental help if you need it.  I am so blessed to have four kids and I can understand that it is an added burden for you.  There is a CML mamas support group on Facebook.  I know several have successfully had kids during treatment.  I wish you the best!  ❤️


Anxious, worried i can understand, we've all been there. Sad? You are perhaps focused on unhelpful things.

So what if none of your family have cancer? It says nothing about you. Why does having a very treatable cancer which is unrelated to lifestyle or genetic factors make you a 'bad egg'? From where did you get this attitude? Is it a belief which helps you? You can choose to let go of that belief and understand that you are experiencing the expression of a random gene mutation. No more or less deserved than a car accident or a lottery win.

It seems however you are thinking about all the ways your life will be difficult/different and feeling sorry about it. I understand it's a period of adjustment but you have control over whether you want to focus on how terrible it all is or decide right now, TODAY, that this is a manageable illness and what you are going through is a temporary setback which you will get through and will become integrated into you life. What are you doing day to day? Are you seeing friends? Making plans for what you will do when you feel better? Make a plan for something fun, 3 months from now - take a workshop, learn something you always wanted to, visit somewhere new, anything that you can look forward to in the short term.

As for emphasising your age, i guarantee you no one feels luckier by getting cml at 40,60 or 80. Some folks react to the diagnosis with "poor me", personally its just something that happened in my life, nothing more nothing less and I'm thankful that it wasn't something that impacts my day to day activities.

The stats on treatment free remission and drug holidays not affecting your bcr/abl after several years of treatment are pretty good. Odds are in a few years you can safely carry a pregnancy to term. Will you find a life partner that you will feel comfortable with to have a child? Maybe/maybe not - just like any women of 27.

Are you an anxious risk averse person,that might be too worried about going without meds for duration of the pregnancy? If so, dont do it, no one says you must have children. Many, many women and men dont get to have the child they wanted for a variety of reasons. Its sad of course, but for the moment im guessing you are anxious over a pregnancy you might with someone you might meet within the next 10 years of your fertile life. Thats a lot of 'might'. And there are more factors there you cant control than just the possibility of relapse.

Yes perhaps I am focused on the negative things, and hopefully this time next year I will be more positive with more time to adjust. But until then I am barely two months in to something I never saw coming and that makes me sad. I am married and have a daughter, so more kids was a part of a very soon future for us that has now been altered and we find that sad as well, no might about it. Everything else I am aware are just worries that may never happen, doesn’t make them any less of a new burden. I still see friends and family and work as usual, I was just putting my more negative emotions on here to see if anyone had a similar story to mine, I am very happy that you are so well adjusted to your diagnosis and I hope in time I will be the same. 

Thanks for the support and reply Heidi! Do you remember when your lymph node swelling went down after you started treatment? I will give that CML mom Facebook group a look thank you :) 

Thanks for the info Colorado! I hadn’t heard about K2, very glad to hear it gets easier 

Just like you I am a newly diagnosed CML patient, it got picked up in November 2020 whilst I was in hospital with Covid 19. Prior to diagnosis I had been experiencing a lot of pain in my hips when I walked some distance, lots of night sweats, my spleen had enlarged and I began losing a lot of weight, around a stone and a half in total most of which dropped off me when I had Covid.

At first I was in utter shock and total disbelief that I had been given this news as, like you, I had led a very healthy and well life up to that point. I teach yoga for a living so well understand the importance of looking after yourself, both in body and mind, so why me? What had I done to deserve this?

As you will read on here, it is not a condition you choose and as leukaemias go we got the 'good' one, the one that is treatable with medication and lets you get on with life! Yes, there can be side effects and we are all different, but you have to try and be as positive as possible (easier said then done) otherwise it will take you to a place you do not want to be. It's ok to feel what you are feeling, there is a lot to process at first, but you will work through it, just give yourself time.

I am still only 7 months into treatment but here's what I have learnt so far:

Initial hair thinning was devastating, I cried most days fearing it would all come out and that I would have to live the rest of my life without it. Eventually, through trial and error, I found using Alpecin caffine shampoo worked for me, and not to stress my hair out too much with over washing, brushing and towelling. I now have zero hair loss on a daily basis.

I am on Imatinib 400mg which has given me a few challenges! Intermittent nausea approx. 2 hours after taking the dose has been combated by having a couple of squares of dark chocolate when I feel sick, this works, don't know why but it works for me.

Swollen eyes, another joy! Somedays they swell, some days they don't. If I drink plenty of water they are better. I also use cold compresses, a rose quartz roller which is cooling around the eyes and occasionally an eye roll on, again its cooling.

Aching ankle joints which seem worse if I do a lot of walking. I take magnesium supplements 300mg and massage magnesium oil into them which helps massively when they are very achey. This is also eased with lots of stretching and strengthening via yoga.

Supplementation, there's a lot of info on here about this. I take Vit D/C/K2 selenium and magnesium which all help.

Exercise! I would say this anyway given my job but its not only a way to keep your body strong and healthy but its a great head clearer too, just as important as the physical stuff.

Finally, do I look and feel normal again - no.

Do I cry when i am reminded that I have this - yes.

Am I angry this came my way - yes I bloody am, but these are all normal feelings and you just have to find a way to navigate it all. Surround yourself with good people, those who love and care about you, they will help enormously, and reach out if you need help, good days and bad days. 




Hi there,

And welcome to this wonderful group. Diagnosis is a complete shock we all get that. Like you relatively young 37 at Diagnosis, I would have considered myself fairly healthy in general. Like you lots of exercise and weight training and a balanced diet not too extreme one way or the other. Unfortunately Cancer doesn't discriminate and your overal health as far as we know have no bearing on your CML diagnosis. No-one "really" knows how it happens unless you've been in a nuclear fallout recently and my guess is you haven't like most of us lol. But we do know its not passed down to you and you can't pass it on to your children (Phew as I have 2 beautiful girls aged 7 and 11 now)

I had a wbc count of 330, platlets around 900 or so at diagnosis. Massive weight loss (that I didn't see coming) and an enourmous spleen. Bigger than a rugby ball I am told. Like you night sweets but didn't put all these things together and realise it was CML.

The early days for me where very hard, I didn't take it well, who could? A robot maybe. I was very down and shocked, sad, crying all the time when I had a quiet moment alone. Everyone processes their diagnosis differently and it's a very personal thing. There is no right or wrong way to feel. However you feel is absolutley fine. I felt angry and betrayed by my body, I felt like the elephant in the room, the odd one out. I remember not long after my diagnosis going to the super market and feeling like the alien in the room, feeling different, excluded, banned from the club of life. Very strange emotions but personal to me.

I remember going to wedding in the South of France with my wife about 2 months after diagnosis and watching a father giving his daughter away feeling so sad and broken inside that I "may" not be able to grow old to see my babies grow up and one day give them away. You are told you have Cancer and to me it didn't make a difference which one. I read nothing about CML for months after diagnosis and had I have not burried my head in the sand I would have been quick to realise all the worry for the most part is unfounded because of our miracle medication. My consultant told me TKI is a silver bullet, they work, but I didn't believe it and sometimes your disbeilf is not that you have CML but that these little buggers actually work. Thats shocking in itself because you know its Cancer lol.

Once you start responding and things start to become predictable again it does get so much easier. PCR testing never gets easier even when you hit the required milestones the worry doesn't go it changes. But things get 90% easier when you hit CCYR and then MMR. It is such a weight of your shoulders and once you are at this level which you will be in time its a whole new game. I honestly feel so much more like my old self and sometimes quietly inside chuckle at how worried I was and to some degree negative.

But I always like to be mindful that without this pill its most likely nuh nights for a lot of us and we have to be mindful that some poor people (although few) don't respond to TKIs and this a Leukamia like any other with devasting consequences. And some of those people will read these posts and wish to be in our position and for that I feel extremely fortunate for how things have gone. And in time your worry will turn to a kind of gratitude but it takes time and I mean years. Needless to say we all worry from time to time we are human so my advice as always is take your time with it all and allow yourself to express how you feel freely, do things you love, be with people you love and slowly through time you'll be a better person than the one before. You just wait :-)

PS some additional thoughts for you is night sweets are an emotional response to stress so that's prob why you still get those. When I am really worried or stressed they return so I doubt that is CML now or the meds. Look into mindfull meditation (and mindfullness) it has changed my life. I use the Calm app. When you get better at it you won't even need that. Just you and your breath and mind free of thought or concern (an amazing place to be). You're going to be fine.



Zed: thanks for sharing further details. I apologize for my wholly incorrect assumptions on your situation. in my experience/circles being so settled at 27 is unusual , i hadn't considered it.

How wonderful you already have a daughter. I imagine it is now frustrating to need to wait some years for your next one. Search on this forum , there are plenty of cml pregnancy posts.