My partner aged 24 has just this week been diagnosed with Chronic myeloid leukaemia. This has all come as a massive shock and happened literally over the space of a week, we are still feeling unsettled, worried and fearing the worse; I can honestly say we haven’t stopped crying. It all became apparent following my partner feeling some firmness on her left side near her rib, which we now know was an enlarged spleen but other than this not a single symptom just a young healthy woman.
Given the unusual firmness a GP appointment was booked and luckily there happened to be some same day appointments and off she went. The doctor was very thorough and didn’t seem concerned however agreed that there was some firmness so to be sure and check everything was in order blood test were booked for the following day and a referral for an ultrasound.
Blood test followed a day later; the day after was when we knew something wasn’t right. Both myself and partner were at work in the afternoon and both our phones started ringing frantically call after call, not being able to answer because of our line of work until a few hours later. When my partner managed to answer she was told “I need you to come into the surgery urgently, your blood test have come back and we need to see you. Bring someone with you”.
The panic really set it with my partner and we knew it was bad as she rang me frantically crying fearing the worse. Anyway the GP went onto explain that she believed that my partner had cancer and the haematology consultant wanted to see her urgently and an appointment was booked for the following morning.
The morning followed and we spoke with the consultant when he told us that my partners white blood cell count was high at 196 and he believed that she had cancer called Chronic Myeloid Leukaemia and wanted to carry out further test however he had examined her blood samples from that morning under a microscope and it was clear to see. However he wanted to carry out a fish test and a bone marrow sample at a later date. He immediately started her on a high dose of Hydroxycarbamide along with anti sickness pills and another medication that prevents gout or something to that effect.
I have to say this is when it really hit home, we have both felt really blindsided by it all and trying to remain positive whilst still raising our little boy. I think the whole situation has really put life into perspective and we are remaining positive about it’s future with the effectiveness of TKI’s etc however that doesn’t stop the constant worry and sleepless nights. It’s bizarre because in a way we feel lucky that the cancer seems to be one that is treatable and reacts well without the harsh side effects of chemo therapy.
Anyway we met back with the consultant a week later and that’s when the doctor confirmed it and started her on the Nilotinib 300mg, 2 pills in the morning 2 in the evening she was to start this the following day and to stop the Hydroxycarbamide they discussed in depth possible and concerning side effects.
As am writing this we are only two days into the pills and fingers crossed no side effects as of yet however very aware that this is early days just wondering what other people have experienced and how long side effects took etc… Never really done anything like this before but just hoping to hear how others have coped away from all the doctors talk and what to expect in the future with appointments, test, milestones etc.
I read your post and I didn’t want to not reply. My husband was diagnosed with leukaemia albeit acute myeloid leukaemia in late October. It was also very unexpected and a real shock to us. I post under a separate thread which has been very helpful and I have received wonderful support from many other people on this forum with experience of acute and other types of leukaemia.
I know that other people will come along to talk to you about Chronic myeloid leukaemia and what to expect but I just wanted to tell you that you can both do this, and you will get into a rhythm. Take it one day or hour or even minute at a time. Write down your worries or questions so that you can address them with the consultant and medical team.
Wishing you both all the best. I will be thinking of you.
Hi @NM97 a very great welcome to our forum you are both now part of our forum Family.
@Toadmum has given you a great response and shown so clearly that it does not seem to matter what condition we have we often seem to share similar fears, anxieties, feelings, thoughts and practicalities.
I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 20 yrs ago.
I have to go out now but as soon as I am back I will respond further.
The main thing is that you really look after and be kind to yourselves, shock in my case took ages to subside.
Hi @NM97 it’s me again.
Just reading your post all my anxiety, thoughts and feelings at diagnosis came racing back to me. My thoughts and feelings have been on high alert since diagnosis, I am far more emotional now
When i was diagnosed I came home and wrote my will and funeral music.
Yes, it does put life into perspective and I have to say I am far less materialistic now and realise that some of the most important things in life are free like good family and friends, if you have them, nature, wildlife and for me music etc.
I haver learnt to say ‘No’ and to ask for and receive help.
I have entered a world where they only speak ‘medical speak’, although I haven’t ever learnt to speak it.
I have learnt to write down all my fears, questions and practicalities before an appointment and to be ‘pleasantly assertive’ and get answers I can understand at appointments.
I have learnt that there can be a lot of waiting on tests, results and appointments.
If your partner has been given a specialist nurse contact they can be a really helpful contact.
I know this can be really hard at this point, but you say you have a little boy perhaps try and be as calm as you can around him as I have found that children from birth sense a lot from parents. If he is old enough to talk to reassure him, tell him what is going on in a language that is appropriate to his age and let him ask and answer his questions that can be hard. He needs to feel loved, safe and secure.
I thought I had my life mapped out in front of me, I know everyone only has the moment.
A day at a time is a brilliant phrase (or an hour)…
Everyone is individual treatment wise, it really is targeted for the person so medical questions are best asked to your partners medical team.
There is a lot of good information on the Blood Cancer UK website and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888
As I said before perhaps really look after and be kind to yourselves, you are a team and please do keep posting.
Wow, everything has happened so quickly and it must all seem so overwhelming.
So many of us are diagnosed without any symptoms which just adds to the shock of it doesn’t it.
You have recieved great responses from @Erica and @Toadmum and I hope this has helped you to feel less alone.
We are all here for you and your partner. x
I’ve had Chronic myeloid leukaemia since I was 15, currently 31. I’m on a different nib medication so can’t say exactly but long term I’ve noticed very little affects in my life.
The first couple of years were more intense while making sure the cancer responded well etc. going from weekly blood tests to two weekly etc the not so pleasant bone marrow test. Luckily not had one in years. Now only have a blood test every 3 months and keep taking my tablets once a day.
A very scary introduction and a whirlwind experience. I initially spent 2 weeks in hospital getting flushed out of the extra cells etc. Before being sent home with only a nib to take.
The nib medication is incredible stuff. And constantly evolving and improving in terms of side affects. Side affects for me are unnoticeable but then I was only a teenager when I first got diagnosed so not exactly sure what’s me and what’s a side affect.
It’s a scary beginning because like pretty much most Chronic myeloid leukaemia didn’t particularly feel ill just a little off, I initially went to the GP with a stomach issues and not eating. Turns out I had the giant spleen which my GP felt sent for a blood test next day was on a cancer ward.
Best wishes for everything hope you and your partner find your groove soon.
Hi a great big welcome @Woden and you have really shown the value of our forum by sharing your experiences and I bet research, trials, medication, procedures and support have really improved in the last 16 yrs.
I look forward to hearing more about you, look after yourself
Thank you all for your kind words, I can’t tell you how reassuring it has been to hear from people who are in similar situations I am very grateful for your replies. We are remaining positive for the future and hopefully we start getting back into the swing of things!
It must be a big shock for you. I hope in time you will be able to come to terms with it and the medication works,
Welcome to the forum @Woden.
Great that you could share your experiences with others. Look forward to learning more about you
Hello @NM97 - I’m so sorry to hear about your partner’s diagnosis. It’s a worrying and scary time for sure and I can relate entirely. I was diagnosed with Chronic Myeloid Leukaemia almost 12 years ago. I was 36. It came as a complete shock and it wasn’t until after diagnosis that I realised I had had some mild symptoms but I thought I was just a bit run down. Like your partner I had a blood test and within two hours was called to say I needed to get to haematology urgently. I didn’t know what was happening but I knew it didn’t sound good! It was then all a bit of a blurred whirlwind.
I started out on Imatinib and then moved to Nilotinib after a couple of years. I’ve been in a major molecular response for a good few years now and actually stopped taking meds a year ago. I’m monitored very closely and it seems to be staying under control.
Everyone’s experience and journey is different. I found it really helpful to note all the feelings, the ups and down, as well as all the questions so I could get the support and reassurance I needed each time I saw my care team. Give yourselves time and space to take it all in. It’s a lot and there is no right or wrong way to feel or react. Be kind to yourselves and look after each other . Let us know how you get on. We’re here for you xx