Chronic neutropenia

Hello
I have been having regular blood test over the last 2 years as my neutrophil level has been abnormal everytime as. well as my total white blood cell I was referred to haemotology which arranged a bone marrow biopsy. It was origanilly thought I had an autoimmune disease but after my bone marrow finding and a new haemotologist who deals with Myeloid problems I have now been told I have a precursor to a disease and it could turn to Myelodysplastic syndrome (MDS) or Leukemia. They found eythroid hyperplasia and a reduced myeloid eythroid ratio 1-1 with reduced granulopoiesis. I also have some pseudo pelger forms on a blood film. I’m have been told that it’s watch and wait with regular bloods and they are observing my Monocytes Lympocyes etc which are all currently sitting on the lower end of normal. and if my blood decline they will repeat the bone marrow biopsy. I have regular infections including recent pheumonia and coidn4 times and currently keep a rescue pack of antibiotics and if I get ill I have a full blood count. I can’t think straight and am worried about the future as I have been told that Im early in a disease? But not diagnosed. I was then given a Myeloid nurse specialist which really freaked me out. I’m worried and think it’s helping me even writing on this forum
Thank you
Nicola

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Hi @Nicky1513 and a great big welcome to our forum.
It sounds like a concerning time for you over the last 2 years.
Now it has turned into a more worrying time for you.
Firstly I was diagnosed with a different blood condition 19 yrs ago and was put onto watch and wait, sometimes called active monitoring, and that is still my situation.
Like a watchful eye.
Yes, I also have a rescue pack for infections, in my experience the infection usually appears on a Friday night when GP’s are closed till Monday!!.
In my experience Nurse Specialists are a key contact for you to ask all your fears, concerns, questions and practicalities.
It sounds as if you might have quite a few whizzing around in your head.
Perhaps write them all down and contact them and have a good chat.
The Blood Cancer UK support line is there for you on 0808 2080 888 and so are we on here
It is natural to be freaked out, shock, perhaps be very kind to yourself and look after yourself and keep posting

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Hello,
I cannot provide help or anything but I just wanted to say that I can relate to you a lot.
I also have had low white blood cell for 4 years and neutropenia (1.7).
As of recently, I also have anemia and elevated MCV.
Furthermore I am still waiting for my diagnosis (no BMB yet) and I am fairly anxious.
I wish you all the best.
Kind regards,
Sarah

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Hello Sarah
It is the waiting which is the worst. Have you not been offered a BMB? Hopefully you will get some answers.
Thanks for reading and sending me the message.
Nicola

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Hey Nicola,
so far Doctors brushed me off and told me that a BMB was not necessary.
Since I have been diagnosed with anemia on top of that hematologist has offered me a BMB but only if my counts further decline – next appointment will be in February.
So, waiting still will play a prominent role in the route to diagnosis :sweat_smile:
How have you been doing recently?
Best wishes,
Sarah

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Hi @SarahD1702 yep, waiting often does play a prominent role in the route to diagnosis.
Luckily you have us to support you in the meantime so please do keep posting how you are doing.
Be kind to yourself

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The last 3 weeks I’ve been change to a Myeloid hematologist and have a myeloid nurse specialist so I feel I have the right support now. and under the person who knows my problems I go back in January so fingers crossed all bloods will be stable.You take care

Speak soonx

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