Husband (36yo) diagnosed with CML

Recent diagnosis
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My husband, who’s just turned 36 years old, was diagnosed with Chronic myeloid leukaemia earlier this week. We have a 13 month old and a 3 year old. It feels like the bright future we thought we were going to have has been stolen from us. I have not been in a good place mentally. We have support around us but nothing will take the mental pain and heartache away. I don’t want to lose my husband. Not now, not in 5 years, not in 30 years even. He is young and I hate that we keep being told he can expect a normal life expectancy - that’s about 40-50 years to go! I’m struggling to see how he can live that long with it. There’s so much that could go wrong, including not responding to treatments and cancer progression. There’s no data to support the “normal life expectancy” statement because drugs like imatinib have only been out 20 odd years. So how is it ok to conclude that Chronic myeloid leukaemia patients have a normal life expectancy without having had a single patient survive from a childhood diagnosis to 80 years with Chronic myeloid leukaemia yet? Everything in medicine is evidence based, but this statement isn’t. Just feel like it’s all lies. I’m sorry that I’m being so negative, but life feels like it’s not worth living at the moment.

We’ve always wanted 3 children. Trying for a third in a year or two just feels like it would be selfish.

I need to hear positive stories from survivors of 30 years or more. But I’m struggling to find it.

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Hello there @Ta5, welcome to the forum. I bet you thought you’d never need to find a place like this!

I’m really sorry to read of your husband’s diagnosis and how it’s immediately affecting your family. Your anger and worry come across so clearly and I’d say let it out! Better out than in, and certainly at this early stage after diagnosis it’s helpful to express how it feels.

Although I wasn’t diagnosed with Chronic myeloid leukaemia like your husband, I live with Polycythaemia vera (PV) which is another chronic and rare form of blood cancer. It really sucks and I feel super angry about it at times. But sometimes I also, can’t believe I’m saying this, feel like it’s sometimes just like background noise a year since diagnosis.

Something to keep in mind is that being chronic means it’s slow-growing and can likely be lived with safely for many years. Your husband may not even need any obvious treatment if he’s on “watch and wait” AKA active monitoring.

The one time I checked my own prognosis it said 5 years, which is laughably wrong. Don’t worry about prognoses you’ve read as your husband has youth on his side which will benefit him tolerating any symptoms and treatments he might need. He also has his whole life ahead in which science can catch up with finding cures.

I imagine your husband has a specialist he can contact so write down all your questions, thoughts, and definitely worries and see whether the specialist can answer those. But really, keep writing it down as it could become its own form of tolerance. Getting this stuff out of your system can help it be easier to look at and see how it’s affecting you and any changes. Over time you’ll be able to see progress and when stuff isn’t going so well.

I’m sure you’ve been reading furiously but I’d say don’t search random websites but try to focus on ones like this who do actual research into blood cancers as there’s a lot of nonsense and inaccurate information at the end of a quick random google.

Maybe have a look at the Blood Cancer UK Chronic myeloid leukaemia research if you haven’t already: Chronic myeloid leukaemia (CML) | Blood Cancer UK

Also look around the forum as there are plenty of folks living with Chronic myeloid leukaemia who’ll have more specific advice.

Thinking of you and your husband at this tricky time, but remember you’ve taken a great step in reaching out to others here @Ta5!

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Hi @Ta5
I am so sorry to hear about your husbands diagnosis ,
I have a different diagnosis but can understand you feeling so scared and worried as a mum myself your concerns really resonate with me and can feel how understandably upset you are
@Duncan has given you really good information and advice and I am sure you will find other people on here who can give even more insight and wisdom.Try not to google things if you can as it gives conflicting answers and can really add to your worries .
I know when I was first diagnosed I was terrified and the lovely folk on here really reassured me about things. You are all going to have good and bad days so be really kind to yourselves .Let us know how you are getting on
Sending hugs and best wishes

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Hi, I am Liza,
I just wanted to say that hearing the word Cancer, makes any ones hair stand up, and that although it feels quite difficult to register now, with the right support he will be able to overcome the fear of having to deal with this type of blood cancer.
I was diagnosed in early 2021 and was devastated to hear that, having had a covid vaccine, due to my work nature, then, had an reaction to this, and ended up at AE, I didnt even know that blood cancer was an actual illness, never mind that was life threatening one. First thing, dont bother reafing up on articles on google, as it will drive you mad, I did that at first, and developed severe anxiety, as i have 3 chikdren, and was a single mum, I too, prepared for the worse, couldn’t sleep, developed depression , and as I also suffer from chronic pain, every single pain related issue, it feels quite worrying. What you need to start doing, for your partner specially, only listen to facts, the most important is that if he has never had a good nutritional diet, he gets one. Taking more resposibility on what you eat, will make a massive difference. And will help him feeling strong. I am on Imatinib, as well, although i am on remission, i still taking this medication, and will be likely to do so. Keep positive, I know its hard to think this way, but things will get to some sort of normality, once he starts the treatment, if he feels like he cant cope, tell him to take some time off work, as this will help him, and if he is really strugling, there are some good cancer psychologist s, that can guide you through any changes, and medication side effects, its very important to understand that we are all going to die one day, so the fact that your husband has a critical illness now, will just help you guys put things onto perspective, live life, enjoy each others support, and think that for some people, they leave this world in an instant, yet we have now a reason to take better care for ourselves. God bless and if you need anything else, just message me, we all been through that feeling of hoplessness and dispair.

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A great big welcome to our forum @Ta5 I am so glad that you have found us.
You describe the thoughts and feelings I had at diagnosis so well and I was the patient and diagnosed with Chronic lymphocytic leukaemia (CLL).
The prognosis for me I saw was 5-10 yrs and that was 20 yrs ago and my last big birthday was my best ever. I have always been on ‘watch and wait’ (active monitoring)
Perhaps think that you have had life shattering news earlier this week and the shock related to that is massive. I was in shock for a long time.
In a while if you think your GP can help you perhaps see them, I needed some talking therapy.
I would say keep communicating with your husband, perhaps if he is OK with it, write down your fears, questions and practicalities for his medical team, even fertility questions etc… A specialist nurse is usually a good contact.
The Blood Cancer UK website has a lot of information on it and the Blood Cancer UK support line is there for you on 0808 2080 888.
Look after yourselves and be very kind to yourselves and please do keep posting we are here for you.

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Hi @liza welcome to our forum and I am so sorry you did not find us earlier.
Thanks so much for posting with your experiences.
Please do keep posting, really look after yourself and yes, live life

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Hi @Ta5 . I was diagnosed with Chronic myeloid leukaemia at 39 and i am now 60. At diagnosis i had a young child who is now a grown woman. Yes i was worried i wouldn’t see her grown up but i am still here. There are many Chronic myeloid leukaemia drugs available now and each has advantages over the other. I know this is a difficult time and it took me at least a year to get my head around it all but things are so much better these days. I had very few side effects on immatinib and it has very good success rates.

Wishing you the best
x

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Thanks so much for sharing your experience @Chrispy . It’s definitely given some reassurance hearing from you. Would you say you’ve led a normal life so far, with Chronic myeloid leukaemia just being in the background? One doctor told us to think of it like a long term condition, like diabetes for example, just something to live with. Also, is Chronic myeloid leukaemia something you mention to everyone you meet? My husband doesn’t want to be treated like he’s “sick” and so he plans not to tell distant relatives and various acquaintances.

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Hi @Ta5 and @Chrispy interesting question about telling people and if/when.
To be honest I told a lot of people to start off with and for a while I was seen as ‘Erica with Leukaemia’ and not just ‘Erica’
Today I just want to be seen as ‘Erica’ and I think this shows how my perspective has changed on my Chronic lymphocytic leukaemia (CLL) as well.
It is personal choice and I expect you will find very differing opinions on our forum.
Personally I think it is ultimately my decision to make who I tell.
However I realise that my husband and son might need support and therefore I say that they can tell who they want.
I wish my husband, son and I had communicated better. xx

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Hi,

I’m in a similar situation with my husband and small children. I too would love a third but realize that will likely never happen.

The idea of having to deal with this is overwhelming and I’m glad you’ve got a little support.

It feels almost like preemptive grief for the things we wanted that seem impossible now.

I don’t have any answers at all for you, but you aren’t alone! xx

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Hi @Ta5 I think over time i just got used to it and it didn’t really affect the way i lived my life. I did tell people close to me at the start and my employer. Its not something i mention these days. Most people forgot i had it as apart from hospital check ups i was the same as everyone else. I was diagnosed at the start of imatinib before it had been proved to work longterm so i did live for a few years with the fear of death until i was told i was unlikely to die from it. I have now moved on to asciminib which is the new drug on the block. There are so many different drugs that can be used if the optimal response is not gained on the first one.

It will be a worry at the start but if i can give any advise i would say don’t obsess with the numbers on the blood tests. these days there are milestones people like to hit but we are all different and we don’t all get to same point at the same time.

There are lovely people on here for support so please post whenever you need help.
x

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Hi Erica,
Thank you for your reply. It has taken me a very long time to come to terms with coping with my condition of Leukemia, as I also suffer with other health problems. Since I have been taking Imatinib, it has triggered severe Menopause symptoms and my chronic pain, which was already bad before, it has worsen, as my body seems to be very sensitive to everything, this also makes the pain in my back very difficult to cope with. I would like to know if there are any other people in the forum that know any techniques or supplements/or support with pain management.
Thanks

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Hi @Ta5 Sorry to hear about your husbands diagnosis.

To try to reassure you that longevity is possible, i was diagnosed with Chronic myeloid leukaemia in 2003 when I was 41 and im still currently in molecular remission. I had young children at the time who i have seen go to university and attended one their weddings. With my other childs wedding wedding soon.

I also managed to continue working until I retired.

I was lucky at the time I was diagnosed that a new drug called imatinib was recently approved. There are side effects more when initially on it, but i tried to plough through and not give up on the treatment. And also making sure i never miss a dose.
Today i get tiredness and im more prone to infections due to being imunocompromised along with a few others but they do not affect my standard of life. (Since covid appeared as a thing I use hand jell when out and about)

The hospital team did try taking me off drugs a few years ago, my bcr abl ( the mutated chromosome that is the detectable characteristic of Chronic myeloid leukaemia) in blood that detects the levels went up 10 fold, but after 2 months back on drugs the level recovered back into full molecular remission.
Today there are several drugs that can be prescribed if one does not work.

I know its daunting when 1st diagnosed for family too, but try to remain positive as i found that has helped me and my family.

The life expectancy with new drugs like imatnib and others are a lot better and in effect turns Chronic myeloid leukaemia into a long term chronic condition.

There is lot to take in when 1st diagnosed and initially they will work for reducing white cell count as a goal, then lower the detected level of cancer in bone marrow, then blood tests to reach molecular remission. Checking for bcr abl levels, which is ongoing.
I still get regular blood tests today and a 3 monthly appointment with my consultant.

The hospital teams are good and will answer any questions you or your husband have.

What I have personally found is to try to be positive about my condition and not dwell on negatives.

Hope this reassures your worries.

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Hi @liza as for pain management, over the years I have fractured and compressed several vertebrae which have been very painful.
I was told to keep moving and to do Pilates classes with an appropriate instructor.
Pilates has saved my back as I have scoliosis and osteoporosis.
But I stress that I am not medically trained and please do take medical advice before doing anything.
Chronic pain can be debilitating, look after yourself

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Good to hear from you again @Tenet, look after yourself

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Hi Erica,

Thank you very much, for your advise, yeah I have been enquiring about pirates and some restorative yoga, and soon will start. I have been told I have scoliosis in both parts in my back, and they are doing other checks for me as it seems to be linked to the sternum as I have severe pain at the front of my chest too.
Hopefully the practice of pilates will help me a little.
Thanks and keep healthy :blush:

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@WorriedJenny Yes it’s exactly that, pre-emptive grief. I’m terrified about getting his biopsy results back and finding it’s a form of Chronic myeloid leukaemia that can’t be treated. I just can’t help but think of the worst cases right now. Life can be so cruel. And I’m sorry that you’re in a similar situation :frowning: x

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@Tenet thank you for sharing your experience so far, and I’m glad for you that you have been able to do those things that you feared you couldn’t. This has given us some hope x

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Hi @Liz59 Have you tried taking Turmeric for the pain? It is one of the few anti inflammatory that i am allowed to take and it helps me. It takes a while o work and is not perfect but it does get pain to a manageable level for me.

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Hi @Chrispy and @Liz59 Please do take medical advice before considering adding or omitting anything to your diet.
Look after yourselves

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