I went to my GP for a fairly routine appointment just after Christmas. They ran some bloods as I hadn’t had any done in a while and my white blood cell and platelets came back very high. I was told I needed referred quickly to Haematology. This took a bit longer than expected and at one point i was told I’d have to wait 7 weeks!! But I managed to get a quicker appointment with thanks to my GP.
I saw my Haematologist last Tuesday and she told me her best guess was Chronic myeloid leukaemia or another myeloproliferative disorder. Not what I wanted to hear! More bloods were done and I had my bone marrow biopsy yesterday - it was not enjoyable!
I have no symptoms. Absolutely none. I have had Hashimotos Disease for about 17 years and I suffer from fatigue due to it at times so fatigue would be the only thing I experience.
I guess I want to know if anyone else was diagnosed with Chronic myeloid leukaemia or something similar with absolutely symptoms?
Hi @Ali48 a great big welcome to our forum.
I had a gynae op and felt fatigued afterwards so I had blood tests and the gynaecologist said to me that he had never had to tell someone this before but you have Chronic lymphocytic leukaemia (CLL), there is nothing more that I can do for you go and see your GP. I thought my days were numbered, that was 20 yrs ago.
Obviously you are in shock and I was for a long time and my thoughts and emotions have been all over the place ever since my diagnosis.
Just try and take things a stage at a time and a day at the time, I know it is not easy.
There is a lot og useful information on the Blood Cancer UK website the the Blood Cancer UK support line is there for you on 0808 2080 888.
Please do keep posting and be very kind to yourself
Thank you for sharing your experience. What a shock that must have been for you!
Amazing that 20 years on you are able to share your story. I will definitely check out the information on here and I am sure I’ll have a lot of questions!
Sorry to read of that whirlwind experience. I can empathise as I had a similarly swift process of diagnosis with Polycythaemia vera (PV) last year, a different but similar form of chronic leukaemia to Chronic myeloid leukaemia. I’m hoping your diagnosis comes back as something else altogether—there are folks on here who had high blood cell counts which went on to not be the dreaded big C.
Like you I had no symptoms prior to diagnosis. I also found out after an initial routine blood test, although I’d asked to be checked for the JAK2 gene mutation as a family member had recently been found to have it, and lo and behold I have it too. Should note that JAK2 mutations are not meant to be hereditary according to medical research.
The bone marrow biopsy is the main way to diagnose these blood disorders so at least you’ve got that out of the way! Not fun, right?! Fatigue is very common in those of us with blood disorders and I’m sorry that you already know it, although I’d say it went beyond tiredness into bone-deep fatigue for me after I’d started treatment. Thankfully it’s faded as my treatment has progressed.
Please try to avoid googling as there’s so much nonsense out there. Maybe stick to official sites like this should you want to read more as its info is more up to date. Keeping my fingers crossed for you, @Ali48.
I am really hoping it isn’t cancer, but I guess I’ll know soon enough!
I think all those gene mutation tests have been done last week so hopefully sometime over the next few weeks I’ll get those back along with the bone marrow results.
Thyroid fatigue is beyond tired as well. I know all about it!
Thanks so much for sharing. It’s nice to know I’m not on my own!
You’re more than welcome, I may well have lost my mind had it not been for the folks on here.
I’m hoping you get your test results back quickly, but I get the impression it’s a bit random as to how quickly they’re analysed depending on where they’re sent off to, so maybe try to find a way to tolerate the wait… My dad waited literally months for his JAK2 result which was rather stressful!
It’s these spaces in between tests and results that can become filled with anxiety so try to take it easy and find ways to offset any worries that come up. You can always share them on here and you’re bound to find a kindly person who gets it and can pacify any concerns.
I was diagnosed with myeloma with no symptoms I had never heard of it until then
I was in A&E with a gall bladder infection
After investigations to rule out bowel cancer (family history) I was very anaemic and sent to haematology where I was diagnosed.
Looking back I was very tired and had lower back pain and my knee had been playing up and my legs aches. I put it down to standing at work and menopause
The consultant who looked after my gall bladder infection saved my life by referring me and I will be forever grateful to him
Hi @2DB
I was diagnosed with Chronic myeloid leukaemia back in 2003 and had no symptoms except for an unusual bruise. The waiting and the unknown at the start are the worst part. These days Chronic myeloid leukaemia is easily treated for the majority of patients with life time medication. It is not a death sentence and is manageable. Bone marrow tests are never fun and you may need more over the first year or so.
There are some lovely informative people on hear with Chronic myeloid leukaemia so you are no alone and are welcome to ask for help whether it is emotional support or information.
Hey @Ali48 - welcome! I’m so glad you found us. It does sound that your January has been a whirlwind.
I was diagnosed with Chronic Myeloid Leukaemia almost 12 years ago. It was picked up when I saw a doctor about sth unrelated and they ordered a blood test, but in retrospect I had been experiencing some mild symptoms (namely tiredness and an unexplained rash that appeared intermittently, that I had put down to being a bit run down. It was all a total shock and whirlwind as you describe, but here I am 12 years later and doing really well.
Take care, remember we are here and let us know how you get on
Hi @MaggieLT, thanks for the welcome. It’s lovely to meet you!
12 years! Wow! I literally can’t pinpoint any symptoms. Fatigue is the only thing. I feel fortunate already that whatever it is is being investigated before feeling poorly.
Just the waiting now! I will be sure to let you all know the outcome.
Oh @Ali48, I’m sorry to read that diagnosis came true, how gutting. I wonder if it’ll come to feel a bit like relief to know for sure what you’re contending with now? Regardless, try to take your time with the diagnosis as your mind reconfigures itself around this life-changing information.
Do you have loved ones you can share this news with? I blurted my diagnosis out right away to my other half, while others here prefer to keep it to themselves to process what comes up first. Perhaps you’ve read it already but here’s the Blood Cancer UK information about Chronic myeloid leukaemia: Chronic myeloid leukaemia (CML) | Blood Cancer UK
If you’re anything like me after diagnosis then a million questions will keep popping up at random moments. Maybe keep a notebook nearby and write them all down, take them to your doctors, and of course share here if you feel like it. Please bring emotional concerns here too—you’ve already experienced support from others. You’re part of the family now
Hi @Ali48 I am so sorry that you have got your diagnosis.
Yes, it is a lot to take in and my diagnosis took a long while for me to come to terms with.so just take it steady, be kind to yourself and really look after yourself. @Ali48 has given you a great response.
Please do keep us posted how you get on, I’ll be thinking of you.
You’re welcome, @Ali48. Glad you have family to support you. Lean on them now with abandon, I say! And bring any of those questions here, it’s the ideal place to ask anything as so many folks will know and understand what you’re experiencing.
Thinking of you and looking forward to your future posts.
@Ali48 we certainly do not want to get rid of you, I look forward to your posts and getting to know you better.
Be kind to and look after yourself, all medical news takes time to consider and come to terms with.
