I don't have any plan set at the moment, but I'm interested in knowing all I can about the disease (how it starts and the changes that will appear in the blood counts).
Hi again
How HCL starts isn't really clear in terms of reasons for diagnosis. There is a genetic disposition, but in the USA some believe second hand smoking, farm pesticides and other carcinogens are to blame. But it's frankly no longer relevant as you have it.
How HCL starts in terms of symptoms, it started for me as exhaustion, breathlessness, bruises, picking up a raft of back to back coughs, viruses and infections. Diagnosis came for me with a bone marrow aspiration. How treatment starts depends on your plan, some people have daily or weekly cycles, some have it intravenous, some injected.
Response to treatment is very personal, everyone is different. But typically as your immune system falls even further you'll pick up bugs and viruses. Some have a stay in hospital, some don't. I had problems with swelling of my face, feet and hands. I also had skin problems, burning sensation, drying etc. but I kept my hair, with both chemos my hair thinned, but I kept it, which is common.
Bloods for me showed a drop in neutrophils which is in your white count. When it gets below 1 they treat me. However with treatment it gets very low, and absolute 0 is not uncommon. Just before I get to treatment time my platelets drop, these are the reasons for the bruising. After treatment your bloods should all improve, but like I say everyone is different so try not to set expectations. Your consultants view on the results is the one to listen to.
Hope this helps
Wendy
Hi all
Been poorly again, after a 6 week virus in sept/oct and shingles at Christmas I'm now on antibiotics again. Feel flu like and whilst nauseous on a morning I was actually sick today. I went to go last week and she gave me the antibiotics 'given my history'. We're her words. I also have an odd white patch on my tongue. Been trying to work out what it is, as she didn't know! She said come back next week if its still there. Has anyone else had anything like this? It's a white circle patch, no pain. Looked on google, what a mistake!
Hey ho, feeling rubbish, feeling worried.
Anyone there?
Wendy
So sorry to hear that you're going through the mill again. I've had the flu symptoms for 3 years now. Had sickness feelings in the morning occasionally (not pregnant). excessive nasal mucus, scalp infection and now permanently bloodshot sticky eyes. Main problem is no energy or concentration.
Not had the white ring on tongue but if you're brave, tap in "health problems white circular ring on tongue" on google search. Ignore all the written answers and scroll down to "images for...(your search title). " First pic is a tongue - click on that and you get 50 pics of people with a similar problem to you all sticking their tongues out so you can compare yours.
I'm willing to bet it's candida/thrush related. But while you're looking at all the other tongue problems, you'll say "Yeccch! At least my tongue isn't as bad as HIS... or his... or hers..." And you'll realise yours isn't as bad as you thought. :-)
There's nothing wrong with searching online as long as you use common sense, Your symptoms must fit ALL the criteria. So if you search "red dot between the eyes", you might conclude the Indian lady next door has been shot by a sniper. But the next criterium is that she would be dead. As she's not, it must be the alternative theory of " traditional Indian face decoration".
Let us know if you win the "Spot-the-tongue" contest.
Sorry to hear you've been going through the mill again, flu, nausea and now the white spot on your tongue.Hopefully the medics will sort it out for you.
Like Yorick says, you can find out loads of info on the web, though some of it you might rather not know. Last year when I had a fungal infection on my toenails, I was panicking till I used Google, then nearly passed out at the pretty grotesque images of manky toes... heck, mine looked not too bad in comparison.
I've been quiet lately as nothing much to report, fingers-crossed it stays that way when I have my check up next month. My platelets are somewhat low, evidenced by the two bruises on my middle toes when I stupidly kicked the side of a bath when getting in the shower at one of my daughters house last week. Ouch!!! The pain soon subsides but the bruises linger for a few weeks - hey, some of it could just be old age!
Heck, I've discovered a social life the last few weeks, joined a local group for cinema and theatre trips, art galleries, meals out, pub drinks etc.... and even more walks... though I get plenty of those with Wigan's Active Living programme, even had a lovely sunny walk on Monday with them, you know, warm enough to take my hat and gloves off and unzip my jacket.
In the forum I have not seen anyone yet who is in watchful waiting. means that although their parameters (blood counts) are low, blood specialist believes that the moment it is not necessary to treat.
I would like to know if anyone is or has been in this situation that has me a little about your experience.
Dear all - haven't been on here for ages but needing a bit of support please! I had cladribine 16 months ago and I've had a few hiccups in the last 12 months with reactive depression, anxiety, vertigo and panic attacks. However, after a few problems with work they have temporarily agreed that I will work 15 hours a week. My energy levels are a lot better than they were 12 months ago but after a full day at work I need the next day off. My commute is perhaps a little bit more physical than most - 30 minute walk each way and a 15 minute boat trip (currently in very rough seas! on a very small ferry!) and I walk the dog for 20 mins before I set off to work. I do the the other hours from home over 2 mornings.
The last month or so though I just feel like I'm wading through treacle and it's a struggle to keep pushing myself. I'm still walking an hour a day with the dog and managing work but that's about it! My yearly follow up is in a few months but my bloods which were done in January were ok (done by GP and sent to the consultant).
I'm only 46 and feel very aged, tired and achy! Has anyone else had spells like this? Is it normal? I sort of thought if my bloods were fine I was fine!!
Hi John I have been through the "Watch and Wait" experience. Mine lasted two years. I cannot see the reason why My specialist had diagnosed Mantle Cell Lymphoma at the time. He said "Mantle Cell always comes back so there's no point in rushing to get rid of it."
It's like saying "I have a slight headache but I'll wait until it becomes really bad and then take two aspirins." I wonder if the delay is due to cost and keeping within budgets.
