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4 week wait for my third blood test

Hi there,

I was suffering from calf pain in February. Following a full blood count at GP, they found signs of clotting also slightly elevated white blood cell count. It turns out i had 2 DVT’s in my leg. My GP wanted to see me again 3 weeks after starting anti-coagulants. He took another FBC and again it has shown elevated white blood cell count. He told me to make an appointment for 4 weeks time and said that he was going to check my stomach. He asked if i had been unwell recently, any infections etc. I have been perfectly well apart from DVT pain.

I’ve convinced myself that it’s leukaemia of some sort. There are 4 small blood spots on my stomach and i keep getting a re-occuring skin infection.

I have 2 more weeks to wait and I feel sick with worry.

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Hi @Thistleuk21, a big welcome to our forum.
I believe the trouble with blood cancers and other conditions is they often share similar symptoms which make them very difficult to diagnose and that is probably why they want to wait 4 weeks for your 3rd blood test to see how your body settles down. Perhaps (I am not medically trained) also make sure everyone knows about your re-occurring skin infection. I have learnt over the years that I have to take responsibility for my conditions and reminding medical people sometimes, we are complex, unique, special people.
However as we all know that does not help your feelings and thoughts which I expect are in overdrive.
The watching and waiting is the worst and I even after 17 yrs get feelings of apprehension before medical appointments.
We are here to support you and if you would like to talk to someone the support line details are above.
However, what I would say is if you feel any symptoms are changing or you get new ones please do seek medical advice.
Your feelings are so natural and so hard, please take lots of care of yourself.

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Hi Erica,

Thanks for taking your time to reply. Its much appreciated.

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Hello @Thistleuk21 I came across your post again and wanted to check in and see how things are going? May I ask how you’re getting on?

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Hi Alice,

Sorry I have not been back on this forum. Thanks for asking about me.

I had my fourth full blood count taken on Friday after I was concerned about some small lumps in my neck. My wbc/lymphocytes are still elevated so my GP has referred me to Haematology for further testing. GP thinks its some sort of Lymphoproliferative disorder.

Can these referrals take months?

Thank you

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Hi @Thistleuk21, no need to apologise at all! Please do feel free to give us a call if you want to chat things through. You may find this Macmillan page helpful, specifically the section ’ Waiting times to see a specialist’ - Going for tests - Macmillan Cancer Support. We have some information around some of the tests and scans you might experience, in case it’s useul for you to read through at this stage - but please do get in touch with us if there’s anything we can do to support you, or anything you want to talk through - Blood cancer tests | Blood Cancer UK
Alice

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Hi Alice,

Thank you.

I asked for a copy of my blood results and it’s a flow cytometry that I need done.

Thanks for the links about testing. Hopefully I won’t have to wait too long to get it done and get some answers.

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Hi @Thistleuk21 please do let us know when you get your results, I know that yukky feeling waiting . Look after yourself.

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Thanks Erica.

This is such a lovely supportive forum.

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Hi I have been having terrible muscle aches so bad I can hardly walk …recently had statin increased from 10mf to 40mg so I can only imagine this is the cause .ihave myelofibrosis been on ruxolitinib since June has anyone had any side effect like this

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Hello @Suzyq. I am so sorry to hear you are suffering in this way. I too have myelofibrosis and am on Ruxolitinib. I wonder what your haemoglobin (Hb) level is at the moment? I find that when my Hb has dropped, my muscles ache more. It was explained to me that there is less oxygen being carried in the blood to the muscles and so they ache more. I find the aching is worse after walking, even just coming up a few stairs. Just wanted to share that, but your aches might be something different. I am not medically trained but I do hope you soon get some relief. I know how miserable it can be. Warm wishes. Willow X

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Oh @Suzyq I am so sorry to hear about your terrible muscle aches, perhaps tell your medical team how bad it really is.
I am thinking of you loads, look after yourself and please keep letting us know how you are doing.

Hi @Suzyq. That’s horrible and can imagine it’s tough to deal with. I can see @Willow has shared her experiences. As @Erica says it will be really important to talk to your team about. I hope the aches ease a little. Please keep us updated on how you are doing x

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Hi there,

I received my diagnosis of Chronic lymphocytic leukaemia (CLL). It actually feels like a relief now after the months of worrying.

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Hi @Thistleuk21 join the club, I was diagnosed 17 yrs ago…
Yes, the not knowing and worrying is a horrible time.
Please keep posting, I look forward to hearing more about you.

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I experienced the same sense of relief when I got my diagnosis. I was just so fed up at that point of all the pain and trying to persuade everyone that something was wrong that I almost didn’t care that it was cancer in the end, I just wanted there to be a plan!

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