Hi, My husband has just found out he’s possibly got CML, waiting for bloods to come back, has BMB booked.
He has a very demanding physical job, I was wondering what side effects from the drugs, people have experienced.
Unfortunately my lovely husband is the definition of stoic! So is currently still in a little denial, whilst I’m reading everything I can, so I can support him, when he needs it. Kx
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A great big welcome @Kelx47 and I am so glad that you have found us.
You really show how different people cope, my husband is a head in the sand person, there is no right or wrong way.
I cannot answer your question although I will copy your post to the Blood Cancer UK nurse advisors for you @BloodCancerUK_Nurses.
If you need to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and there is a lot of useful information on the Blood Cancer UK website.
As for your question I believe (I am not a medical person) that everyone is very individual and treatment, if/when needed, is tailored to them and everyone reacts or not differently.
Perhaps if your husband (and the hospital after Covid) lets you come with him to appointments you might write down, with him, all the questions you would like to ask now.
I expect it might be a very scary time for you both, however you show it or not.
Be kind to yourselves and please keep posting how you both are.
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Hi @Kelx47,
I am so very sorry to hear this & also really pleased you have found us. I hope you are doing okay also?
I can imagine you have lots of unanswered questions right now whilst waiting for more information. Therefore please do know that if you or your husband wish to talk any of this through with us we would be happy to help in any capacity we can- Blood cancer information and support by phone and email | Blood Cancer UK
May i ask what your husband does for a living?
I’m sure many within our forum current taking CML treatment will be able to offer you lots of insight into their own experiences. It can however be really individual.
As you are likely aware, the results of your husbands bone marrow tests and all reports will allow his team to decided which treatment would be best for him.
Our webpage here offers information on CML & leads onto treatment options- Chronic myeloid leukaemia (CML) | Blood Cancer UK. You can also order our CML booklet for free here- Chronic myeloid leukaemia (CML) booklet | Blood Cancer UK Shop.
In addition our newly diagnosed one talks more about practical steps when newly diagnosed and can be a great resource for work and financial worries and what happens next- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
It’s important for you & your husband to ask as many questions as you need to regarding the side effects of the offered drug and also for him to have clarity from his employer around reasonable adjustments, should that be required.
Again please don’t hesitate to contact us should you need any more support- 0808 2080 888.
Best Wishes, Lauran
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Hi @wilkerson a great big welcome andI look forward to hearing more about you and how you are doing
Take care of yourself
Hi @johnfoster a great big welcome to our forum and I look forward to hearing more about you and how you are doing.
Look after yourself.
Hi @jems14541 welcome to our forum.
I am interested in your post and where you have got your cml knowledge from?
I look forward to hearing from you.
Take care of yourself.
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Hi @jems14541 thanks for posting. I just wanted to add this link to accompany your post, as sometimes stats like these can be quite confusing/worrying for people - Blood cancer prognosis | Blood Cancer UK. Thanks to tyrosine kinase inhibitors (TKIs), survival rates for people with chronic myeloid leukaemia (CML) have improved dramatically over the last 20 years.
Most people with CML will have a very good prognosis – particularly those diagnosed in the chronic phase. Recent evidence suggests that if you respond well to treatment, you could have a similar life expectancy to someone who doesn’t have cancer.
Hope this is helpful!
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Hi @Kelx47 . I was diagnosed back in 2003 and had no problem with the medication. Side effects were minimal for me but some people have a few problems in the first few weeks as the body gets used to it. It depends on which medication is advised as some have more side effects than others. There will be plenty of advice on what to expect once medication is prescribed.
Most people get very good results from medication and long term prognosis is very good. I was initially on imatinib but moved to Nilotinib to get my levels lower. There are newer drugs but it seems to depend on the hospital as to what they recommend.
All the best xxx
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