Symptoms prior to diagnosis

[Hanneesweedie]

Hi, would anyone mind sharing the symptoms they experienced prior to diagnosis, and what sorts of things were showing up in blood tests? I am already consulting with my doctor about any concerns I have, just wanting to hear about other people’s experiences if possible. Thanks!

[emmieb-UK]

Hi - I felt very tired. Had pain in my abdomen (not where my spleen was so a bit weird!), lots of bruises although I didn't notice until after diagnosis as we had a boisterous puppy at the time. Night sweats which I put down to menopause. Frequent infections (kidney infection, rash on my tummy, etc.) It was the tiredness that kept me going to the doctor. I had about 5 blood tests with GPs telling me I was fine until one GP did a blood film and then I had a phone call immediately telling me I had HCL and needed chemo. My experience is that it's very difficult to get diagnosed. Good luck.

[Hanneesweedie in reply to emmieb-UK]

Thank you! I’ve had some abnormalities in my blood tests for a while but apparently they’re most likely due to inflammation, as yet the source hasn’t been found. I had some high platelets and ESR, at one point I had raised lymphocytes but I saw a haematologist who wasn’t overly concerned as my lymphocytes weren’t raised when I saw him and said the film showed no signs of malignancy. I had to fight to get my follow-up blood test which he suggested and that showed lymphocytosis, anisocytosis and eosinophilia, as well as slightly raised platelets, microcytic anaemia and slightly raised ESR. The lab person recommended a repeat in a month’s time so I hope the doctors go along with that. The haematologist did say that according to their lab my iron was slightly low, whereas according to my doc’s lab it was within the normal range. I’ve been on iron tablets so I really want that re-checking because if it is still borderline or low I think that could be a cause for some of the things showing up. It’s just frustrating to be feeling so fatigued and achey and then to have things showing up, but to feel like you’re no closer to getting to the bottom of it. It’s hard to accept that it’s just the way my blood is and I should just go along with my life, because it’s worrying. The haematologist wanted my results forwarding to him and I bet they haven’t done that, perhaps he would want to see me again with the new things that have shown up. Anyway, I’ll shut up now because I’m just going on 😁

[emmieb-UK in reply to Hanneesweedie]

Is it worth talking to the nurse at Leukaemia Care? I never got any results from any of my bloods so a bit clueless on what they all said I'm afraid. I really feel for you when you're feeling so grotty and no one has answers. I hope you get some soon though.

[Hanneesweedie in reply to emmieb-UK]

I’m not sure, I don’t want to waste anyone’s time and I’m really not a fan of talking on the phone unless strictly necessary either. I really don’t know if there’s any chance of it being leukaemia, when I try to research my results it comes up with possible blood disorders but there’s other explanations as well. It’s just ongoing and some things seem to be getting worse re: my bloods. I think I will make an appointment to make sure I get a repeat blood test booked in and to ask about them sending the results to the haematologist, I hope things will have settled down though. I did feel pretty rough straight after my last blood test, so perhaps that explains the lymphocytosis and other things. I guess only time will tell, but waiting really sucks! Thank you so much for your responses!

[emmieb-UK in reply to Hanneesweedie]

good luck xx

[Marie_14 in reply to emmieb-UK]

How about taking a notepad with you and asking for the results as you want to keep a record? They should send the results anyway but some Haematologists don't seem to bother! That is wrong as it's your body and your results are important. Good luck.

Marie

[Hanneesweedie in reply to Marie_14]

I do have a printout of the results so I could send it myself if necessary and if I had the contact details. My GP surgery just aren’t very on the ball and everything seems to be a struggle with them!

[StefHere in reply to emmieb-UK]

Thank you so much for this

[Hanneesweedie in reply to StefHere]

Me? Or were you meaning someone else?

[StefHere in reply to Hanneesweedie]

Your replies are most informative , thank you

[2003UK]

Hi, I just remember feeling so lousy (flu like) and so, so tired, tearful and listless. I did not know what fatigue was at that point. Swollen glands, hot flushes, easier to loose weight. A lot of teeth and urine infections. As these symptoms could be attributed to other situations and conditions like overdoing it, stress, menopause which make diagnosis so difficult. My CLL was diagnosed because of the symptoms and then in my case a full blood test, high white blood cells and lymphocytes, low red blood cells and platelets. However I am not a medical person so please consult someone with medical knowledge either through a Leukaemia Care nurse or you local practitioners. I now take a list of fears, questions etc. to all appointments and a pen and paper to write down the answers. Take care.

[Hanneesweedie in reply to 2003UK]

Thanks, I did speak to a leukaemia care nurse but she didn’t seem interested in any specifics of my blood test and just said to speak to my GP. I have got a higher than normal white blood count, low mcv and low haemoglobin level. No one seems overly concerned though, other than the person who looked at the blood film and suggested a re-test in a month, I guess it’s too early to say whether that was a fluke or a continued issue. I think they deem any of the abnormalities as insignificant because they’re not crazily far from the normal range.

[2003UK in reply to Hanneesweedie]

Hi, I think as I said above the Leukaemia care nurse has given you the right advice because diagnosis is so individually specific taking everything into account. What I do know is the just waiting and not knowing is just the worst time for me. There can be a lot of monitoring of CLL and that is called 'watch and wait' or as some people call it 'watch and worry'. I have been a very lucky girl as I have been on 'watch and wait' since I was diagnosed in 2003. I still get a yukky feeling before all medical appointments. A nurse told me once tongue in cheek that if you have enough blood tests you will find something out of sync. Take care.

[StefHere in reply to 2003UK]

Thank you

[Kleighton]

Hi - I got a pain in my back after walking. Initially put down to muscle strain, then to osteo arthritis but after 4 months was confirmed as myeloma. It was the osteo arthritis consultant who spotted the high levels of para protein in my blood and he immediately referred me to Haematology. That was 10 years ago and diagnosis may be quicker now of course. Take care

[Hanneesweedie in reply to Kleighton]

Wow thank goodness for that consultant!

[Str1960]

Over a period of months I began to feel overwhelmingly tired a lot of the time. I had drenching night sweats which soaked my pyjamas. I also suffered bruising (no skin discolouration) on my limbs without bumping into things. And the main symptom was weight loss. I lost three stone in as many months! In the end it took an eye test to show that I had haemorraging retinas and at last was referred to hospital.

[Hanneesweedie in reply to Str1960]

Oh my goodness, that sounds awful for you. That is a hell of a lot of weight to lose in that short a time! Hope you’re doing okay now.

[Str1960 in reply to Hanneesweedie]

Much better thanks though the tiredness is still a big factor in daily life, along with water retention around my eyes. Imatinib seems to keep everything at bay but has its own side effects, notably severe muscular cramping.

[Jharwood18 in reply to Str1960]

Was the bleeding in your eyes due to the leukemua

[Str1960 in reply to Jharwood18]

Yes. It was entirely responsible, even though they initially attributed it to diabetes.

[Jharwood18 in reply to Str1960]

I was diagnosed with cnv which is bleeding in the retinas a year before I was diagnosed with hcl

[Sepsur]

In retrospect, because I was diagnosed whilst in a coma, I found I was increasingly susceptible to opportunist infections. If I cut myself it took ages to heal and often went septic. I would pick up chest infections more frequently. I felt dog tired most of the time. My muscles & body ached BUT I had a physically demanding job & I was excessively busy all the time. I also experienced a terrible sense of impending doom - not part of my character.

[Hanneesweedie in reply to Sepsur]

Thank you for your response!

[Searchingforrainbows]

My mother was looking after me after my operation, she all of a sudden felt ill, like she had food poisoning which didn't go away, she became very tired and withdrawn and colourless, i finally got her to come with me to her hospital thinking she had a bacterial infection, within 4 hours she was diagnosed with AML with fungal pneumonia, they didn't think she would make it, we got her well back home and 8 weeks later she contacted and infection and this turned to sepsis, 2 weeks later she is back home fighting the biggest fight of her life 4 months into a 6 month prognosis

[Hanneesweedie in reply to Searchingforrainbows]

Oh jeez, that sounds utterly horrendous for you all 😔 she is so strong and I hope and pray that she keeps on fighting. It sounds like she has amazing support from you and the rest of your family ❤️

[Lola69]

Back tooth abscess ( 2013) and huge neck! Sinusitis and blocked ears. Bloods normal except for a slightly elevated LDH and bilirubin

[Hanneesweedie in reply to Lola69]

Oh wow, that sounds pretty non-specific (to a non-medic anyway).Thank you for your response!

[Lola69 in reply to Hanneesweedie]

7 years prior I had a chick pea size lump on my jaw. Misdiagnosed as a salivary gland infection. A pity as SLL when located in one area is highly curable with radiation.

[Hanneesweedie in reply to Lola69]

Oh for goodness sake 😔 that’s so frustrating! Did the lump ever disappear or did they suggest that you just leave it because it was ‘only an infection’?

[Lola69 in reply to Hanneesweedie]

on 2 occasions they gave me antibiotics to treat it. When it resurfaced the GP sent me to see the ENT doc who asked me if I smoked then said the lump was due to my braces and told me to go back to see him if it reappeared. . I never went back .. I learned my lesson I was feeling fine though just that little chick pea size lump..

[Hanneesweedie in reply to Lola69]

It’s not your fault, they shouldn’t just make assumptions 😔

[Lola69 in reply to Hanneesweedie]

I should have been more proactive.. did not think it would be a lymphoma