What are the signs of MF PLEASE?

I have had ET now for 16 years and been on oral chemo for 10 years. Recently been feeling weak with chills and sweats. My bones and joints start to ache around 5 pm every day! It is weird. I feel that I have a constant virus and cannot shake it off. My white count is 3 at the moment. My RBC is 11. I look so pale. I am afraid that my condition is worsening. Not had a bone marrow biopsy for 5 years now so may think I need another one. Any comments please..

17 Replies

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  • You really need to go back to your haematologist for advice as soon as possible if you are worried. By the time my ET to MF progression was spotted my counts were already lower then yours but I would still say get an appointment ASAP and talk about your worries. At least you will know then what you are dealing with and need have no more what maybe false worries.

    Good luck,

  • Thank you for your advice. I am due to go in 3 weeks but may need to ring earlier. Did you have any obvious signs of the MF. So sorry to hear that. Do you cope ok with it?

    Kind regards

    D

  • My counts were all going steadily in the wrong direction. I had had ET 17yrs and been on chemo all the time. Was getting sore joints which Haemos repeatedly said was nothing to do with it but have reads from the "experts" that that can be a feature. Now get night sweats and have started to lose weight. I am being referred for advice on Bone marrow transplant but fear my age will be against me. I have steadily enlarging spleen also. Fatigue is the biggest problem as it is quite debilitating. Please don't compare yourself with me though. Go and get proper advice ASAP as you are clearly worried. The bone marrow biopsy that confirmed the MF was the first I'd ever had so I guess you might expect one now if you want a proper diagnosis.

    Good luck and I hope your fears are groundless

  • Hi, I haven't got MF, but ET. Just wanted to say that I think you should have a bone biopsy every other year - sounds like you're due for one! Good luck with it, and your horrible sweats and aches, sounds horrible, bad luck. Rx

  • Hi Rachel,

    Thank you for reply and advice. It has been quite awhile since my biopsy and think you are right! My sweats are terrible and body aching for England as we speak. Keep thinking that a new day will bring me a feeling of wellness but never does.

    Best wishes to you

    DX

  • Hi DENMOOR Sounds like you're having a rough time and from what you say you def need to go back to hosp for a check up asap if only to put your mind at rest. Mine has a day unit I can ring anytime and they will test my bloods at short notice. The thing is although youve been on oral chemo for ten yrs which is the main treatment for MF this doesnt mean your condition wont change but from what ive read on here all our symptoms are similar in nature so there cant be much between us.

    When I was diagnosed PMF 6yrs ago I had gout in my feet = uric acid build up, a very high white cell count and a reasonably enlarged spleen which if you have already with your ET it will be hard to tell if youve progressed to MF without unfotunately having further invasive testing. I believe it is quite difficult to diagnose as it goes. Anyway good luck at your appt and fingers crossed you get a negative outcome. Cheers for now and hope you feel better soon as the stress of the worry wont be helping you.

  • Hi and thanks for replying and your kind words.

    I am sorry to hear that you have MF and hope you are coping with the condition. You are fortunate to have a day unit, alas in Sheffield we do not have that facility but can ring the Consultant if desperate. I think a biopsy is the only thing to put my mind at rest as been over 5 years and so much can happen in that time.

    All the very best wishes

    Dx

  • Well like everyone else I have my ups and downs. You are right 5 yrs is like a lifetime when living with a MPN. I see from your about you that you have a training co, I think you do remarkable to carry on as I used to be a 'training consultant' - fancy title lol, and appreciate how you need to paint your happy upbeat face on to deliver your best even when you are literally collapsing from within. Fortunately I took redundancy prior to developing PMF but I know i would have struggled to carry on with it after diagnosis so fair play to you. Please let us know how you go on coz were nosy beggars - just jokin . . . Take care

  • That made me laugh! Yes I do and in Northampton for 9am tomorrow. You are so right. We have to put a false face on and perform like actors when deep down you are really struggling and just want to curl up on the sofa with a blanket and hot chocolate. I shall return tomorrow after 7pm exhausted and just wish I could win the lottery. I shall keep you updated of course and thank you for your kind words

    Dx

  • Lots of good advice there, never let things drag if you find them unsettling, you are right to get back to your consultant asap.I went to my GP with a couple of issues but didnt mention a lump below my ribs that I was also unsure about. Went back a month later with it and was referred for further tests which led to a diagnosis of Primary MF. When I looked back some of the smaller issues were MF related but there was nothing for my GP to put them together until my spleen enlarged; at 58 I thought it was ageing! Should it be MF, it is not the end of the world. I am now 18 months out from a stem cell transplant and doing fine. Hope it works out fine for you.

  • Hiya and thanks for replying. Sorry to hear your condition and glad doing ok! I know I need a biopsy as 5 years a long time and just feel dreadful most days.

    I am keeping positive though and will face whatever I have

    DX

  • Hello,

    What I have realised here , is that a lot of problems, symptoms and pains that I had before by diagnosis, was actually just that, symptoms of E.T.

    Still, nowadays when a minor pain or so, occurs, I think it will be over the next day. When it doesn't,I then read about it here and -voilà!, I know that it is connected with my E.T. That just makes me feel a bit better. Does that sound strange or wrong?

    My skeleton also starts to hurt in the late afternoon, even if I don't do much. I'm sweating like a boxer during night, or I'm freezing like mad. My hands and feet cannot stand colder weather than +18 degrees.

    Luckily my partner is like a radiator and warms me up, even at a distance ;-). But being outside in the winter time is just painful. Also, the famous tiredness. It is not a 'I have done a lot of exercise' tiredness, it is a ' my body isn't up to this' tiredness.

    Some days I also have that feeling of a pre- cold. I very rarely get one though.

    I feel sorry for and also admire you all,who must have biopsies and all sorts. I just take my medication and then I have to have my oesophageal varices checked once a year or so.

    It is difficult to look happy and great and treat people at my work, on the days when

    it isn't a good day. If they are 'and how are you', I used to say 'I'm the same as before,me' or so. Noone (exaggeration) will know about these diseases, or will even understand the implications of them, so I avoid to tell people really.

    Sometimes I would like to talk to someone that understood and could ask a relevant question and I think we do a bit of that here, although not eye to eye.:-))

  • Hiya how ya doing!

    Thanks for the reply. It sounds as if you feel like me in the afternoon. I can time it. Chills,aching bones and joints,shivering,sweats! Its horrible! Going to see my consultant in 3 weeks so having a good chat.Like you its difficult to smile some days when you just want to curl up on the sofa in front of the fire with a cuppa and chocolate. It is lovely to exchange comments and thoughts on here and not alone.

    DX

  • , HI Denmoor

    Sorry to hear how lousy your feeling, I can understand though as just started IFN and endless probs,HU caused me most of your symptoms after the first 12 months, sore joints, sweats at night, just wondered have you considered it might not be the MPN, have you had your hormone levels checked, I have ET and discovered mine were pre- menopausal symptoms as well, its a never ending trail isn't it! Let us know how you get on, and try not to worry, be proud of what your achieving aside from all this. Good luck!

  • Hiya

    That is a good point and considered that. I am 48 and not had a period in 6 months so could be a combination.I took IFN for 5 years 3 times a week and felt god damn terrible so now on chemo. I get terrible joint pain and sweats and chills. Feel tired constantly and hard sometimes when raising 2 demanding children.

    Thank you for your reply and nice to chat on here, all the best

    D X

  • Hi Denmoor Firstly your GP can run a blood test to check for the menopause, which I think would be a good idea so you know where you are. I feel chilled at dusk but don't know whether I am more sensitive with ET, or if it is just how I am If your white cell count is low then you are vulnerable to infection etc. Unfortunately our meds lower other counts as well as the platelets. It sounds like you need to see or at least speak to your haematologist. Don't feel a nuisance as it is his job to care for you. And yes menopausal hot flushes can be confusing, I never knew if I had low blood sugar as a diabetic or if it was my platelets. Best wishes

  • Hi tarifa,

    Thans for you e mail and advice. I think i shall have the test at my docs as you say and also going to request another biopsy. Some days the only way I can get warm is to have a hot bath to relive the chills and warm my bones. I do know I have low white blood cells and think that is why I permanently feel as if coming down with something.

    Many thanks for your thoughts and best wishes to you too.

    Denise

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