Hairy cell leukaemia

I'm afraid I have the same problem, Trish. Six months after chemo, I told the specialist I felt weak, walked with a stick, and also had stomach and nasal problems. He said "You can't be feeling ill. Your blood results are good." And he wrote in the letter to my GP "The patient feels well in himself". That really annoyed me. Now it's over 3 years since chemo and I still feel rough. I've seen other specialists about stomach, mucous and pains in shoulders and hips but they just diagnose "allergies or stress"

Do you have any other symptoms?

Yorick

Hi Yorick - you made me laugh with the "patient feels well in himself". I had that too after the consultant saw me straight after chemo. I did not feel well in myself at all and I had told him!!. Do you think they have a standard letter and they just change the relevant parts like name, blood counts!!!

You sound like you have been through the mill. My symptons are so vague - just like the hairies! I have achy joints, have general tiredness and then spells of more severe fatigue. I have migraines too which only started a year before diagnosis. I'm on 30mg citalopram as well for depression which has been great but might be making me tired? I have an brain MRI as I have vertigo and it showed small blocked blood vessels in my frontal lobe. Nothing to worry about apparently!! Probably the migraines. Not very comforting but sometimes maybe too much information is a bad thing! I also get dizzy hot fainty spells but I put that down to being a woman of a certain age!

I'm managing but would just like to feel full of beans! I see these other people who have had Leukaemia and run marathons. I admire them but how do they do it??? Amazing!

Thanks for replying!

Trish

Hi Trish. I've become very cynical over the NHS. After reading online that the average specialist gets £75000 a year but can get a £75000 bonus if he meets certain criteria in the first year then automatically qualifies for the next four years... maybe he has to put "patient feels well in self" to get the money. Several of my biopsies failed. One medical person told me this means they failed to find any cancer cells. My current specialist tells me it means the sample was compromised. If so, how did they still find the cancer cells?

I've bored everyone on this page to death with my theory. After searching all my symptoms online, I believe they're caused by Candida, the fungal infection. I think it caused my gastritis (they all said it was food allergies until my GP asked for an endoscopy). They all said my joint pains were arthritis until my GP examined me and said there was no sign. Candida can cause bursitis. It can also cause tiredness (it turns sugar in your stomach to alcohol), Leaky Gut syndrome, poor blood results... in fact everything I've got. The chemo did get my blood back to normal and my spleen back to normal size.

But all my other symptoms are "caused by allergies or stress". That way the specialist can send you back to your GP. So I've been treating myself with sodium bicarbonate. Doctors scoff at this saying that it can't kill candida, it makes your stomach more alkaline which makes the candida worse. BUT I've discovered that when bicarb reacts with hydrochloric acid, the result is sodium chloride (salt). And when your baking with yeast, you add salt to impede the growth of the yeast. I rest my case.

Last time I asked the specialist what the hairy bit is in HCL. He said it's a mutated leucocyte. My theory is that it's become impregnated with candida DNA and the hairy bit is the rhyzome (root) of the candida. Trouble is now they'll wait until I die, then announce my findings and get all the Nobel prize money I should have got! I was telling work colleagues that cats get Alzheimers two years before that university published its results. I'm wasted, ya know. Still, they say a prophet is never recognised in his home country. Perhaps you can get a blue plaque put on my house when I'm gone. I'll leave the money for it in the coal shed, under the plant pot.

I've just chanted a spell to make you get better. It begins... "Izzy whizzy, let's get busy..." Let me know when it arrives, :-)

All the best, Yorick (Chris)

Hi Trish,

I guess you realise that hairy cell leukaemia is a weird condition - mostly the treatment with cladribine or pentostatin works well, some folks sail through it with no adverse reactions (confession.... lucky me was one of those) but others get laid low with allsorts of problems.  And some consultants are really on the ball, while others are miles off the pace.

It sounds like you're getting plenty exercise, wlaking your dog, walking to the ferry to get to work... I'd be knackered doing all that regularly, I do get out walking (did a seven mile hilly group hike yesterday) but am really glad I got early retirement a few years ago -though it would be nice being 10 or 20 years younger!

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Hi Chris,

Cracking post there Yorick..... I loved the bit about some consultant getting a Nobel prize claiming the creidt for your research.... hope you're still managing to enjoy yourself despite the medical issues and aches and pains.

Back to that walk I did yesterday - we had a tasty pint sat outside a welcoming pub in the sun afterwards. Funny moment when one woman who we didn't know from Adam (or Eve) suddenly spotted her new waterproof coat still had a security tag in the pocket and blurted out "Oh, I wondered why it beeped on the way out... but no-one chased after me...er, I did pay for it, honest!"  My mate added that she better not try cutting it off, as some of those tags spew ink everywhere if you try. I've never had that problem....

Thanks Chris and Frank for making me laugh on a very wet dreary Sunday! My Dad took sodium bicarbonate every day after breakfast (I think for indigestion) but maybe it was killing off other stuff instead?!! I tried the candida diet once but I failed miserably. I live on a small island and with the recent weather I'd be grateful for any  food that gets here whether it fits a diet or not!!

I find the whole hairy thing a bit weird. People seem to think I'm cured because I've had chemo and I think I'd tricked myself into that as well. I've been doing more long term planning and generally forgetting about it. Then it all catches up with me again when I feel tired and then I get a bit depressed and of course the annual check up is looming in a few weeks so my bruises suddenly take on more of a significance (I always have bruises!) and tiredness and anything else that could remotely fit into a scenario where the hairies are back. And then I dodthe stern talk of my bloods were fine 3 months ago so can't possible have gone downhill that fast!

Anyway - enough rambling. I'd like to be like the girl from that old Timotei advert who flicks her golden tresses and happily runs across sunlit fields without a care in the world!!!

Hope you get nominated for the Nobel soon Chris!! You could be the first with HCL and bring it to the public's attention! Fame!!

Cheers

Trish

Hi Yoric,

I understand your case was a diagnostic error.
I do not know what's the relationship between mantle cell and hairy-cell leukemia, but I understand your final diagnosis and therefore decided treatment.

Hi everyone,

My case is related with a correct diagnosis of hairy-cell leukemia, but the hematologist has decided to avoid treatment for now (though will keep doing regular blood checks).

Has someone been or is now in my situation?

Best regards to all

Hi all and it was nice to see a few posts, except of course it's not good to see if someone has a problem, I mean its good to see people rallying around and helping each other. Been on watch and wait before, for me it was were the side effects were a lower issue or risk than treatment. So my bloods were rubbish but not infections etc, so why have chemo if you're not suffering? I too have been told I'm 'well' when I feel awful! Some consultants treat the HCL and some treat the patient! So the 'well' means the HCL is well, not us. In a pickle. My gp said the white patch is a ulcer, but after she said twice 'its normal to be painful' I told her AGAIN that its painless, she's not listening either. Happened to have a dental appointment and she immediately said its not an ulcer but leukoplakia. Been referred for a biopsy as its linked to mouth cancer. Do not drink or smoke so she thinks its linked to my immune system. Clearly worried as with HCL, we have a much higher propensity for a secondary cancer than jo blogs. Back at GP next week and don't exactly want to say someone disagrees. She been great with me, this feels somewhat embarrassing. Has anyone else had leukoplakia? Wendy x

Hi Wendy - I have no experience of Leukoplakia  - sorry! Another fun word to spell though!  I hate all the lumps and bumps that now take on a whole new angle. I had a breast lump a month ago and was quite convinced either I was paranoid or that it was indeed cancer. It turned out to just be an ordinary lump! I'm hoping yours will turn out to be something ordinary too. Good luck with the GP though! 

Trish

Hi Wendy,

It seems your dentist was on-the-ball with your white spot - no, I'd never heard of leukoplakia either, but have just looked it up on an NHS site which said it can develop into mouth cancer in between 0.5% and 20% of cases, quite a wide range, so hope you're at the low end.  I do realise that once us hairies have had chemo, we have an increased risk of getting other cancers.... presumably as our immune system is compromised.

As you have a good relationship with your GP, I wouldn't worry about telling her it's not just a mouth ulcer... it seems dentists usually spot any mouth-related issues. Reminds me of a year or so ago, when I saw my GP about what felt like grit in my eyes.... he had a cursory look and immediately diagnosed dry eyes, put me on eyedrops... and then a few months later at an eye test, the optician spotted I had glaucoma, so that resulted in some thorough hospital examinations and more eyedrops to reduce the internal pressure. I did look up eye problems on the internet and was gobsmacked to find an A-Z of hundreds of eye conditions..... many of them unpronouncable!

Just realised I forgot to post news of my trip to Wigan last week for my 6-monthly hairy cell MOT.

Well, I was in and out pretty quickly, no delays and not much of a queue, I even saw the same consultant I'd seen last time - a very personable guy, had time to chat and talk and try to find my spleen... it was spotted a year or two ago on an ultrasound scan so it's in there somewhere!

Anyway, blood results were ok I guess - the only real change was platelets a bit low, dropped from 94 to 84. Doc reckoned no need to panic till they drop to 50.... haemoglobin was 12.9, WBC 4.7 and neutrophiles 1.2 - so on the back of that and a lovely sunny Spring day, I treated myself to an ice-cream in the local park's newly-restored pavilion cafe, tasty!

And yesterday Wigan was again scorching - almost a pity I took the train up to Windermere for a cruise on the lake - no sun up there, perishing cold, cloudy and blowing a gale - but I toughed it out on the upper boat deck well-wrapped up with hat and gloves and took loads of photos. Then found a lovely cafe in Ambleside where they do the most amazing Irish stew, served in a large mug, worth every penny.

How's everyone else getting on?