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Symptoms and prognosis - Probable Leukemia/Lymphoma :-(

22 Apr 2019 02:29

Hi (sorry it seems to have turned into a bit of a lengthy post).

I wasn’t sure whether to post this in the ‘introduce yourself’ or ‘waiting for a diagnosis’ thread – as they both seem kind of similar. Anyway, I do realise I probably should have posted this first before my post about scans in the ‘ask the nurses’ thread.

I know one shouldnt self diagnose (and that's why I need to see a specialist ASAP. But I’m pretty certain I have some kind of blood/ lymphoma kind of cancer (leukaemia, hodgkin's or one of the variants)

I’ll try and keep this as short as possible (though it’s complicated so that might prove difficult). So I’ll try and list my symptoms first.

First, the bloods: On looking back over the printouts and photos I have of previous blood tests I’ve had over recent years. I noticed that I have had a low white blood cell count for at least 2.5 years now on every single blood test I’ve had – and I have 8 to hand – including 3 done in October-November and December 2018 (the first test I have to hand is September 2016). Just to be clear when I say low – I mean really low – like lower than the low end of the given range – enough to be flagged on the test readings. I note my neutrophils have actually progressively gone down in count.

The September 2018 test actually has a flag stating “leucopenia, cause: ?” Sad

Ok, so there are the bloods – obviously NOT GOOD.

Other symptoms I’ve had over the past 2 years or so have been frequent flu like symptoms or at least the feeling of always having a cold/flem feel in the mouth/sniffle etc. Currently I’ve had one that started 10 days ago and has continued.

The flu part of this is that I’ve often felt ‘light-headed’ or even dizzy. Kind of like when you walk, you walk ok, but you feel your balance is off in your head.

Frequent infections – like mouth ulcers, rashes, stiffness in joints (mainly the hands).

One rash (it was like some kind of hives/welt – really bright pink with a white ring around it -on my fingers and pal, got so itchy last year I actually had to call 111 and set up an out of hours weekend appointment to see a doctor at stupid o’clock in the morning).

Although not together in 'rashes' and not a large amount I do have some of those red blood spot things (petechiae) spaced out in my abdomen/sides/chest area.

I have also had sporadic bouts of fatigue/extreme tiredness – ones where I have felt so drowsy I actually felt myself dropping off whilst sat in a chair or I’ve even had to go and lie in bed. This has been the case whether I have exercised that day or done completely nothing.

This could be related to cancer or not) – but just over 2 years ago (in February 2017) I started to get muscle/twitches and facilitations that started in my calves. They have continued pretty much ever days since – but are random in almost every part of my body at certain times – literally everywhere, they continue on and on almost constantly – obviously making sleep difficult.

I did actually read at article that was dated 1999 that ‘Paraneoplastic Syndromes Earliest Sign of Some Cancers’ (including lymphoma)

I note on my blood test from October 2018 the doctor had screened for Lupus (probably because of the low white count and the twitching– The Lupus anticoagulant which came back negative.

Just to add some more risk factors for cancer (specifically blood, lymph) I have been a Type 1 diabetic (insulin dependent) since my late teens (so obviously with I’ve got a weak/compromised immune system. Also a higher than blood sugar level over so many years is another risk factor – sugar feeds cancer cells.

My grandma on my dad’s side (who I never met as she died in the early 1970’s (before I was born) died of leukaemia at aged 67.

My grandad on my mother’s side died of cancer at aged 79 (think it was stomach/bowel related – though don’t have confirmation).

I am also in the one of the main risk groups  ' Male, between 15-40' (I'm actually aged 42 now).

I have swollen lymph nodes in my neck (I didn’t realise they are supposed to be the size of a pea – mine are both bigger than dates on both sides). I probably didn’t get too worried about that at first – as they have been like that for years. I thought it’s been that way because I had my tonsils out when I was a child – so they kind of took the place of my tonsils – they never go down in size.

Late last month I actually gave up running and also going to the gym. It’s been almost 1 month since I did any exercise (that wasn't necessary - i.e. walking in the airport and going to the supermarket). I mainly stopped working out one month ago as I had a really bad pain that appeared to be coming from my lower back area. It was so bad that I felt like I was about 90 years old all of a sudden and I couldn’t even put my socks on without it really hurting. That really painful stuff subsided a few days later, but pain and discomfort continued and actually seemed to ‘move around ‘that area, sometimes below the buttock., sometimes right at the base of the spine, and even more into the upper hmstring.

But over the last month – (every day though not all at the same time) I have felt aches and pains in my back (both lower and upper) and neck and particularly the hips (perhaps bone marrow), and yesterday I felt it in both forearms. Of course when I was running and gym training 4 times a week I would have put this down to a combination of training and the fact that I’m not as young as I used to be. But I’ve basically done nothing for a month – so something is really up.

Basically I’m looking for some advice on what to do next. I have so many symptoms and possibly the ‘twitching’ thing threw off the doctor back in England.

I realise I have so many symptoms that some of them could basically be a lot of things (I could even add a couple of other things). I've practically been reading up on stuff periodically (often at stupid o'clock in the morning) for over 2 years now,  . . . .It's not like I just looked at the first page of a serach engine or one person's random blog.

So to summarise. My biggest concerns are:

Constantly Low white cell count (possibly bone marrow related)

Pain (without exercise)  -  ‘Bone’ or other deep pain.

Constant 'flu symptoms

Should I try and make an appointment to see a haematologist or oncologist? And as my other thread here. Should I try and get a scan asap. Which one? MRI? PET? CT?

Obviously something is seriously wrong. I know you shouldn’t self diagnose but everything points to leukaemia or Hodgkin’s lymphoma of some description.

I desperately need to speak to some kind of expert and least and see what stage I’m at and how many (probably months) I’ve got left to live.

Obviously already having a very low white cell count and weakened immune system means I have absolutely no chance of surviving very long Sad

By chance a couple of years ago (watching Spartacus the TV series and then wondering why the actor suddenly changed for season 2) I came across Andy Whitfield’s story (something which I revisited very recently). Hell, he was only 39 mega-fit, looked healthy and strong, seemingly did all the right things and he only lasted 18 months (see Documentary 'Be Here Now' (2015).

Similarly ex Arsenal footballer David Rocastle lasted the same amout of time with his Leukemia - super-fit- aged 33. Given my health condition I’ve got no chance . . . . and I have so much to sort out. I don't even know if I'll even have the time left

To make matters ever worse and complicate things. I am actually main carer for my parents. They are completely reliant on me (one 100%), so I don’t know what the heck I’m going to do regarding that. Where I go they go and vice versa and there is NOBODY else to help out at all. I’m just as concerned for them as I am myself. They would be completely lost. HELP! I'm lost and it's already aftre 3:30am again (I dont sleep so well).

Symptoms and prognosis - Probable Leukemia/Lymphoma :-(

22 Apr 2019 07:14 in response to TwitTwoo

I am most definitely not a doctor and this is most definitely not a diagnosis, but has your GP eliminated Lupus (systemic lupus erythematosus) as a cause for your symptoms?  Other possibilities might be Chronic Fatigue Syndrome (CFS/ME) and Fibromyalgia. 


Symptoms and prognosis - Probable Leukemia/Lymphoma :-(

22 Apr 2019 15:38 in response to TwitTwoo


Before you waste your money on unnecessary scans, why not try a different GP? You’ve had these symptoms for over two years now, your fears have been exacerbated by Dr Google and have picked up some disinformation along the way -  for example “sugar feeds cancer” is a discredited theory peddled by quacks and charlatans who prey on cancer patients and the worried well. If you don’t believe me see

I’m not a clinician but your symptoms could br caused by a number of things ranging from the trivial but annoying through to life threatening. These need to be systematically eliminated and only trained health professionals can do this.

Changing your GP, or asking for a second opinion, would wipe the slate clean and give someone with a fresh pair of eyes chance to review your case and start to get to finding out the root cause. 

In my own case the CT scan showed the location of my growths but it was the biopsies which confirmed the cancer diagnosis. I didn’t have PET or MRI scans because my primary was inoperable and having a more detailed picture of the d*mned thing wouldn’t have added any value to my treatment plan. 

I hope you get to the bottom of this soon.

Best wishes


Symptoms and prognosis - Probable Leukemia/Lymphoma :-(

22 Apr 2019 17:37 in response to telemando

As far as Lupus is concerned. I only really have the October 2018 blood test to go off where it states:


! Lupus anticoagulant index 0.84         (*range given as - 0.90-1.20)

Normal no action. Lupus screen < 1.2 indicates a negative result.


A negative result, though I'm not sure if that completely rules it out as I'm not an expert. The problem is that with so many symptoms I'd have to join as least 25 different forums to try and get to the bottom of what most doctor's seem unable to do.

As for the other 2 things you mentioned. Of course I have come across both conditions during my more than 2 year internet research journey. But I'll have to get back on the internet doctor searching to 'refresh' my understanding of the conditions. From memory I can't remember anything that suggested that I might have any of those 2 conditions any more than some kind of cancer things going on.



Symptoms and prognosis - Probable Leukemia/Lymphoma :-(

22 Apr 2019 20:31 in response to TwitTwoo


Honestly to put your mind at rest I would seek a different opinion or if not that and you need immediate reassurance and can afford it, you can ask your GP to send a referral to a private hospital and pay them for a scan and possibly more bloods, ranges from £250-£800 depending on the type you need.

Sometimes people do have results at the lower end of the ranges and that’s normal for them, warranted they may be more susceptible to certain infections but it’s still normal. 

To put your mind at ease, I am not a doctor but I worked in haematology in over a year whilst training (biomedical scientist - the people who interpret results, aid diagnosis, order further tests or liase with doctor over treatment), and when we had patients with newly diagnosed blood cancers, it was VERY apparent in all blood parameters - everything would be effected in most cases and it was very urgent, to the point where we would be running around the laboratory ringing doctors and getting the patient admitted immediately. If this is something you have been experiencing for a while, I’d maybe put it on the back burner, whilst not completing forgetting about it, you could explore some other options into why you are feeling this way. 

My last note of reassurance:- if you had blood cancer, blood tests are the most common way they discover it, you would have been in if they were worried about the slightest thing or you would have had repeat tests, maybe even a bone marrow aspiration. 

Hope this helps x

Symptoms and prognosis - Probable Leukemia/Lymphoma :-(

22 Apr 2019 20:34 in response to charrrhx

P.s. what I’m trying to say is, if there were any serious concerns, you would have been 100% explored, you wouldn’t slip through the net as it has to go through laboratory professionals, results authorised or explored more via 2 people and then the doctor is given either telephone confirmation/advice if urgent, or results are sent electronically once verified. Hope this is a little reassuring for you.

Symptoms and prognosis - Probable Leukemia/Lymphoma :-(

29 Apr 2019 23:07 in response to charrrhx

Hi. Thanks for the responses.

Unfortunetly my latest blood test (for vitamins and minerals) showed very high levels of vitamin B12 in my blood. So it's not looking good.

I'm led to believe this is quite rare - and especially as I don't take supplements and don't even eat foods high in vitamin B12. Everything is still pointing towards things I said in the original post Sad

I'm just wondering now if I should book to see a hematologist or oncologist asap. Or maybe even both.