Recent CML diagnosis

Recent diagnosis
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Hi everyone,

I’m 35 and have just been diagnosed with Chronic myeloid leukaemia, after being admitted to hospital due to palpitations. I have 2 beautiful children; a little boy who is 3 and a little girl who is 1 years old, a very supportive husband family and friends. I was tired prior to this, but put it down to being a busy, sleep deprived mum of 2 little people.

I’m desperate to find some positive stories of how people adjust to the new normal and begin to cope with it. I’m utterly devastated, still in shock, feel like I’m floating in another world that isn’t mine.

I’ve started taking imatinib, bloods good so far. Though every ache, niggle or cough - I’m terrified!

If anyone else has had a diagnosis similar to me or who are similar age to me, I’d be so grateful to hear your experiences. Also surrounding how you have adjusted to family life with this diagnosis.

Thank you :pray:t2:

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Dear @hph,
I would like to welcome you to our forum, I am so sorry for the reasons that have led you here but I hope you find it a safe space to share your thoughts and feelings and I know our community here will offer you an amazing support network.
There have been a couple of threads recently from others who have shared similar particularly people with young families so I am sure you will get some responses here which will be so helpful.
I wanted to also say just take one day at a time for now, you are adjusting to so much and its going to feel like a rollercoaster of emotions. You will eventually get to a point where the Chronic myeloid leukaemia is just in the background and you will feel back in control. Right now be kind to yourself and give yourself space to just breath.
We have a support line here and if you would like to talk things through you can call us on 0808 208 0888, we are always really happy to help and support.
I am glad to read you have a supportive family and friends, continue talking to them about how you feel.
Take good care,
Heidi (Support Services Nurse)

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Hi,

I’m in a similar position, just been diagnosed with Chronic myeloid leukaemia at 33 and have a 9 month old baby…I had no symptoms and has come as a big shock. I just keep thinking about my baby and hope I’ll be able to see him grow up. I have yet to start treatment as awaiting results from bone marrow and bloods still.

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Hi @hph a great big welcome and I am so glad that you have found us so quickly.
You are no longer alone, although how lovely to have a very supportive husband, family and friends. I expect they are all wondering how to be and what to say because they care.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago and my life is better today and I am fitter today than I have ever been.
I had an abnormal cervical smear test and had a procedure. Afterwards I was also feeling so tired and yukky.
Anyway the gynaecologist told me I had Chronic lymphocytic leukaemia (CLL).
I was diagnosed just before Christmas and my Christmas card crossed with a friends in Los Angeles,and she had just been diagnosed with Chronic lymphocytic leukaemia (CLL) too.
She is still getting up to all sorts of adventures with her 4 sons and is now about 93 yrs old
I was in shock for a long time and your description of how you are feeling, I described it as feeling in a surreal bubble with the whole world going on celebrating Christmas around me.
Yes, every lump or bump, ache, niggle cough etc. and I panic.
I cannot better @Heidi-J-BloodCancerUK s response to you.
I could not explain to work what I did not understand myself.
I would say give yourself time, be very kind to yourselves, try and keep the lines of communication open and be aware little ones have ears and pick up on tensions.
Please keep posting how you are doing and perhaps do not underestimate the emotional impact of your diagnosis

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Hi @SPrincipe another great big welcome and please do read my response to @hph and @Heidi-J-BloodCancerUK s brilliant response.
I think it is completely natural to have your fears, I was a great one for the ‘what if’s’, over time this has reduced.
Someone said to me if you are thinking and fearing the future then you are not appreciating the here and now, so true.
Look after and be kind to yourself and please do keep posting

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@Heidi-J-BloodCancerUK @Erica

Thank you both so much for your kindness and thoughtfully supportive words. The warmth means so much, I’m really grateful for you taking the time.

Yes - my family are devastated. Though the reality of life with small children, makes life carry on, which it should. So finding space for quiet, to begin to process is going to take time. If anyone has any guidance on what helps in guiding loved ones, I’m all ears. I’ve been very honest with everyone around me, been clear that asking me questions is too much currently and assuring them I will give any information I have.

My NHS work family have also been of great support. It’s funny, I’m an Occupational Therapist, so often, guide people on how to conserve energy levels in my practice - now my turn to practice it more. It’s a strange place to be as a patient now, a role which I learn to adapt to in time.

@SPrincipe sending much love and strength. Life with little people is hard enough, without having to contend with all of this. Hope you get some rest this evening. Early night for me, as my 3 year old is waking a lot, having been unsettled by my absence due to hospital admission :broken_heart:

Thank you again.

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Hi @hph, you might have seen my post from a few weeks ago at the point of diagnosis about my husband. We are in a very similar situation to you, although it’s my husband who’s got Chronic myeloid leukaemia. We’re of a similar age to you, he’s 36 and I’m 34. We’re also NHS workers, and we also have a 3 year old and a 1 year old.

Firstly, I’m really sorry about your diagnosis. Nothing can prepare you for this kind of news. However, as our consultant has repeatedly said to us, there should be a really good prognosis. I’ll share our experience so far and maybe it’ll help in some way.

It’s been exactly 1 month since my husband’s diagnosis and we have both dealt with the news differently. I would say I spent the first 1-2 weeks going through steps of grief. My previous post on here was written when I was at the angry stage - I was angry at the situation and felt like I’ve been robbed so early on in our marriage/young family life. That phase didn’t last too long and I feel like I have accepted our circumstances now. I took a full month off work and today was my first day back.

My husband has dealt with it very differently however, and I can’t say whether that’s because he’s the one with Chronic myeloid leukaemia, or just the fact that we deal with things differently. After the initial few days of shock, worry, fear etc., he started to think very positively. This was until he commenced Imatinib. It’s been 2.5 weeks since he started imatinib, and unfortunately, he’s been getting really bad pain in his thigh muscles, making it difficult for him to walk at times. This has affected his mood more than the diagnosis itself. He has been off work for the last month and plans to take another month off. I would say that he is still processing it all, but with a delayed response.

We have only told close friends and family (and colleagues of mine). It’s a condition to live with and we have felt that telling every single person we’ve ever met would make it a topic of conversation every time we saw them. And it’s just not nice having to talk about it all the time.

We’ve decided to live life as though it’s not there and in the background. Letting it consume us with what ifs every day will just be a waste of time, there’s no point in letting it rob your happiness and still enjoying each day that comes. We are hopeful that my husband responds to imatinib. I hope you have a good response too x

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Hi,

I have been just diagnosed with Myeloproliferative neoplasms (MPN). Which literally turned my world upside down. Im here looking for some advise, what to do next and how to live. I also have two small children, who mean the world to me. Im 39and seriously dont want to die. This diagnosis scares me so much…

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Hello there @milka, welcome to the forum. I’m so sorry to read of your diagnosis with one of the Myeloproliferative neoplasms (MPN) and how it’s turned your life upside-down. You’ve found just the right place to bring your worries as many people on the forum live with Myeloproliferative neoplasms (MPN), including myself.

I wonder how you came to be diagnosed? Hopefully you didn’t have a clotting event taking you to hospital as some people do. In my case, a blood test found I had the JAK2 gene mutation which led to further testing and I was diagnosed with Polycythaemia vera (PV) last year.

Perhaps you’d find this Blood Cancer UK information about Myeloproliferative neoplasms (MPN) helpful: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

If you look around the forum you’ll find others here with Myeloproliferative neoplasms (MPN). If you know which kind you have you could check the various threads dotted about relating to specific Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET).

For now though I’d say it’s totally understandable that you’d feel scared as the big C can feel terrifying. Do you have loved ones you can share your fears with? Perhaps take note of what comes up for you, write it all down, and take them to your specialists who should be able to help with your worries.

A way to seek more immediate advice is to call the lovely specialist nurses at Blood Cancer UK on 0808 2080 888 who can give you personalised information and support.

Please keep us posted about how you get on @milka, you’re not alone with your diagnosis now that you’ve found the forum.

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Hi Duncan,

Thank you very much for all information sent and warm words.
So for a year now while doing my routine blood test for my thyroid level and full blood count they noticed my platelets were high. In May I had JAK 2 test done to exclude this illness. However the doctors today said most probably its Essential thrombocythemia (ET). I will have a bone marrow biopsy done in couple weeks too…

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You’re most welcome @milka, I know only too well how it can feel after diagnosis with an Myeloproliferative neoplasms (MPN). I had high platelets like you, but they’re back in the normal range since I started treatments last year.

Although I’m not a doctor, I’ve noticed many people here with Myeloproliferative neoplasms (MPN) also have the JAK2 gene mutation. There are dozens of other gene mutations so it’s great you’re being tested for which one is causing you issues.

The Myeloproliferative neoplasms (MPN) itself will be individual to you so the bone marrow biopsy will make sure of what your blood cells are doing right at the source, likely in your pelvic bone, and this will decide which Myeloproliferative neoplasms (MPN) you have.

My bone marrow biopsy showed I had signs of both Essential thrombocythemia (ET) and Polycythaemia vera (PV) but was closer to Polycythaemia vera (PV), which is why I was diagnosed with that. I’ve noticed many people here who’ve had the biopsies say it’s better to have anaesthetic as the procedure can feel uncomfortable. I was fortunate in not feeling any pain during mine, but the nurse made sure to anaesthetise my lower back very well. It did remind me of having teeth removed under anaesthetic, if you know that sensation. I’d say make sure to do this too, and have someone accompany you as you might feel a bit wobbly afterwards.

Essential thrombocythemia (ET) and Polycythaemia vera (PV) are very closely related and something my haematologist told me that reassures me at moments of worry is that Myeloproliferative neoplasms (MPN) like these can be lived with into normal old age. Sadly there’s currently no cure for them, but we are more likely to pass away with them than from them. This keeps me feeling optimistic about a long life ahead and hopefully it might help you too.

Here’s the Blood Cancer UK information about Essential thrombocythemia (ET), which I’d say is really well researched: Essential thrombocythaemia | Blood Cancer UK

Do look around the forum for others living with Essential thrombocythemia (ET). You’ll find many folks with invaluable advice about what helps them, what symptoms to look out for, experiences with the different medicines we tend to be prescribed… Lots to be reading and taking in!

But I wanted to say from personal experience to let yourself feel all these difficult feelings and share them with loved ones you trust. If you’re creative then express how you’re feeling in your art-making and get it out of your system. Maybe even being in awe out in nature might help right now. For me, in time it has become less scary and more kind of mundane. I hope you come to feel less worry, but let yourself feel it all for now I’d say.

Let us know how the bone marrow biopsy goes and don’t forget you can always call the lovely specialist nurses on that number above.

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Hi @milka I am so glad that you have found us and a great big welcome @milka
I see @Duncan has given you a very comprehensive response.
I can really hear your anxiety, which I reckon is completely normal, be very kind to yourself.
When I was diagnosed I went through all the ‘why me’s’, ‘what if’s’ and perhaps it gets worse having little ones.
I reckon for me it was that the diagnosis and medical terms were a completely foreign language to me.
Yes, as @Duncan says that the Blood Cancer UK support line is there for you on 0808 2080 888.
I see that you are having tests still and I think that was an anxious time for me the waiting and not knowing.
I have found just posting on here helps me.
Have you got any support?
As I said before be ever so kind to yourself and please do keep posting how you are doing

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Aww thank you for all your kind words! It means a lot to me! I will definitely let you know what the biopsy results are. And yeah the doctor said exactly the same today about the whole procedure of biopsy. I will have some reading now with all the information provided i will have a great night🤗

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Hi @milka

Welcome to our supportive Online Community - I’m glad you’ve found us at this time as a place of support and to connect with people who understand what you’re going through.

I can see you’ve been sent really useful information and support already from Duncan and Erica. Please do let us know if you also have any questions about using the forum as they’ve suggested. You can find posts related to Essential thrombocythemia (ET) or MPNs by using the tags, which you’ll find on the forum homepage and at the top of threads. You can also use the search bar, which again is at the top of the page. If you would ever like to you can either start your own thread or comment on another post related to Essential thrombocythemia (ET) or MPNs or you can comment on someone else’s post already tagged. There’s of course no pressure to do this - I’m just putting this here as a bit of guidance to help you get started if you’re looking to find others with the same diagnosis (this thread is Chronic myeloid leukaemia so your comments may not get found by others, if that makes sense).

Just to remind you also that our support services are here if you ever need them - details of how to get in touch here: Blood cancer information and support by phone and email | Blood Cancer UK

Hope this helps.

Take good care of yourself,

Ali

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Hi @hph . If you are looking for a positive story then you will find plenty out there. I was diagnosed with Chronic myeloid leukaemia at 39 back in 2003 and i am now 60. After the first few months the side effects fall and immatinib just gave me cramps in my legs and a few tummy troubles which were pretty easy to live with. There are now plenty of other drugs so if the side effects carry on you may be able to switch to a newer drug but for a lot of people immatinib works very well.
wishin you the best.
x

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Hi @hph,

I’m really sorry to hear about your diagnosis. I’m a male aged 53 so a lot older than yourself. I have two boys 18 & 16, plus a wonderful supportive wife.

I was officially diagnosed on 2nd July this year and started on Imatinib that same day. Although, your situation is very different to mine i just wanted to say that I can understand and appreciate everything you have said in your post, particularly the “floating in another world” comment. I felt exactly the same.

After three and half months I that feeling has gone now and I am in a much better place. I have returned to work full time, I am nearly back to the same levels of exercise as I was pre diagnosis & I am functioning as a husband and Dad like I did before I had Chronic myeloid leukaemia. The only slight issue i have is getting tired a bit earlier in the evening, but a bit more sleep is no bad thing.

I still worry when I have aches or niggles as you say (I think everyone in our situation would be the same).I am sure that will improve in time as I become more confident in my treatment path, I hope it will be the same for you. I just try to think that not every every ache, niggle or cough has a sinister reason behind it, why should it have when it didn’t before we had Chronic myeloid leukaemia?

I am most certainly a better person than I was before I had this illness & that is one massive plus I take out of all of this. It also made me get my backside into gear and to marry the woman who I love after 27 years of being together, which after the birth of my sons was the happiest day of my life.
Please try to stay positive, listen to the brilliant advice from people like @Heidi-J-BloodCancerUK & @Erica . It really will help you.
Take care of yourself :+1:

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Hi @Chrispy, you’ve mentioned you had leg cramps and tummy troubles with imatinib. Those are the exact two side effects my husband has, although the tummy issues aren’t so bad now that it’s been almost a month. The leg cramps have been bothering him a lot. How long did it take for the leg cramps to go away, and how long did you end up being on imatinib for? Unless you’re still on it! I think knowing side effects do wear off will make my husband feel better about it.

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Hi @Ta5 The leg and foot cramps got fewer over time but didn’t go completely. I think the suggestion was bananas help due to potassium and tonic water that has quinine in it.
I moved on to Nilotinib to get the BCR down further but i can’t remember how many years in that was. I would guess about 4 years. I have now moved to Asciminib due to the heart concerns of Nilotinib plus it has affected my thyroid. My BCR is extremely low so my dosage has now been reduced.

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@Ta5 sorry not replied sooner, we were away with family and went off grid!

What similarities we share, humbling to know we’re not alone. Though feel incredibly sorry you are also facing this adjustment, though it sounds like you are navigating a way through that can work for you all.

I am so grateful that you’ve shared your vulnerability here, it’s a really powerful way for meaningful connection - it’s been a great comfort for me as everyone just ‘gets it’. I read your message to my husband, obviously with tears in my eyes. I hope the transition of going back to work has been manageable for you. My husband is back to work also, it’s not an easy load. Though I’m hopeful this initial chapter will be soon behind us and we can begin a new normal.

The side effects your husband is experiencing sound very painful, I do hope he gets some respite from it during the day at least. I’ve noticed now my HB is improving, I have more energy, though just in time for bath and bed time I get this really awkward dull ache pains in my back. My white blood cell count has come down significantly from my results last week, so mentally, feeling better that the treatment is starting to work.

I don’t want to say a ‘take care of yourself’ message without acknowledging how incredibly hard that is as a mum anyway, especially with all this going on - but really, I hope at least you can do something that gives you a spark of joy. So yes, take great care. Sending love

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@milka Sending much warmth - hope you’ve got some helpful guidance here and from your team. I really feel for you too, it’s very surreal. My children and husband are my absolute world, like yours must be. The challenge I’m having is being present in my head with them whilst this is going on. Being outside in the fresh air with them is helping very much. My husband says I’m no different as a mummy, but it’s hard to manage. Take good care

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