HCL and feeling unwell: Hi - I had chemo for... - Leukaemia CARE

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HCL and feeling unwell

emmieb-UK profile image
11 Replies

Hi - I had chemo for HCL just over 5 years ago but this winter have been feeling run down again. I'm menopausal too which doesn't help with night sweats! I've been to the GP several times and they have done the usual bloods and they are all ok. But I still feel run down! No bruising though but have had 3 different cold/viruses over the winter and the glands under my left ear are up and have been for 3 months. GP doesn't seem concerned and I think now thinks I am mad but given that it took me 2 years of going to the GP before I was diagnosed with HCL I'm not entirely confident. Should I trust that the bloods are ok or should I keep persevering? Thank you.

11 Replies
emmieb-UK profile image

I saw the GP again today and have been referred back to haematology but don't know how to delete the post!! I always feel like I'm being a hypochondriac these days with lumps and symptoms. So hard to know what to do and I hate bothering NHS when they are so busy.

NicoleLeukaemiaCare profile image
NicoleLeukaemiaCareAdministrator in reply to emmieb-UK

hi Emmie, don't feel that way - its only natural that you're going to be very in tune with your health. We have a nurse service on our help line five days per week if that would help and you can book a call back online too leukaemiacare.org.uk/book-y... > it's better to be vigilant :-)

emmieb-UK profile image
emmieb-UK in reply to NicoleLeukaemiaCare

Thank you - I didn't realise you were there so much but that's great to know. Thank you :)

frankmok profile image

Hi Emmie,

Sorry to hear you've not been feeling well - make a nuisance of yourself with your GP, also use the LeukCare chat line, the people there are likely to be much more expert than your GP. Do you see consultant haematologists regularly? I had chemo for HCL ages ago back in 2003, been on no medication for it since, but I did have severe night sweats once or twice a year or so ago - the second time drew an unbelievable quote from my GP "To me, night sweats are no big deal"! They can indicate a returning problem with leukaemia, or a load of other things.. also they can be just one of those things! At least I knew they weren't related to the menopause... though sometimes it feels like I've had the male menopause... or maybe I've just become a grumpy old man.

Regards and best wishes for a healthy future, Frank.

emmieb-UK profile image
emmieb-UK in reply to frankmok

Thank you! I think I find the GP quite tricky to negotiate but you've reassured me that it's not just me! I've now got an appointment back at haematology so hopefully will get more sense then! Thank you :)

cochinella profile image

Sounds like you need to ask for a second opinion from another GP, if possible. You're not bothering the NHS, it's vital that your fears are acknowledged. Good luck going forward.

emmieb-UK profile image
emmieb-UK in reply to cochinella

Thanks - I managed to see a different locum GP this week and have got an appointment back at haematology - hopefully I will get some sense from them! I do find the GPs can be tricky. First one didn't even listen to me and went on and on about the menopause and night sweats and what I could take without even letting me finish the context of what I was saying. I gave up with him immediately! Thanks for being reassuring. :)

HAIRBEAR_UK profile image

Hello emmieb,

You have definitely done the right thing by posting here and it is so good to see so many rally to confirm that you are right to persevere and look for answers. great to read you have another haematology appointment. well done.

This winter has been particularly tough for many of us living with leukaemia. I have questioned my own status a few times as infection has held on for many months , nodes flare up & night sweats have reappeared at times, Now have an ear infection this has worn me down without menopausal issues. We do struggle to shift infections and often need the right support from a GP, I hope the haematologist can offer guidance to help.

Good luck


emmieb-UK profile image
emmieb-UK in reply to HAIRBEAR_UK

Hi Nick - that's really comforting to hear too - thank you. Although not nice for you - ear infections are the pits - I hate the pain and dizziness that goes with the ones I have had so hope you get better soon.

Such a winter for viruses this year. I thought my immune system wouldn't work at full strength either but got told by my consultant when I was discharged that it shouldn't make any difference. I get so confused! Common sense seems to tell me that as I've still got a % of hairy cells instead of healthy ones then my immune system might not be at full fighting battle strength. Anyway - I'm rambling! Thank you for replying and for everyone being so reassuring.

ColX-UK profile image

Hi emmieb

I think this winter has been worse for all of us.

I have CML and have felt much colder and more tired than usual since Christmas. Had a really bad bout of flu which took a few weeks to get over.

With the ‘beast from the east’ approaching I guess it’s not going to improve soon.

Difficult to know whether there could be something else going on but it seems like we’ve all had a more difficult winter this year.

emmieb-UK profile image
emmieb-UK in reply to ColX-UK

Thank you - it's reassuring to hear everyone's had a tougher winter with bugs (not nice for anyone but reassuring too!) Thank you for replying - hope you stay well xx

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