Hairy cell leukaemia

Hello Chris

If I were you I would not waste money on the tests ... there are even hair specimen tests that can be done at these alternative health places ... but from my own experience, the fluconozole solves the problem. Even taken two of them at once will make a huge difference if you do have systemic candida. Then take one once a month.

It is worth giving it a try. Nothing ventured ... nothing gained. Good to hear you got enough energy to sort out the flooring.

By the way ... I also do not believe that candida can be starved to death. It can help with the diet, but won't cure it. The fluconozole kills it. Until the next time you take antibiotics or steroids or your immune system is compromised ... then you just use fluconoxole again. There is another name for it but I can't remember now. It is the generic and is less expensive.

Get well

Dianne

Just almost had my first Rituximab - what a mad 2 days!

On Thursday we got to the 2nd levell of infusion and my chest started to swell up - I could feel bubbles up my neck and I had an apple around my line. So they stopped it, thinking the line was amiss. I then waited 4 hours to have an xray to check it and at 4.30pm they decided they couldn't do it! I only got 40 ml in - less than 10%. They told me the doctors strike was not to blame - mmmmm?

Came back on Friday at 9am and they agreed (after some persuasion) to put a canula in and start the Ritux. They couldn't do the xray (with stain thingy) until afternoon, so we got going. Managed to get to the 3rd increment then my throat went all spiky and swelled. It was amazing - within 30 secs it went from scratchy to closing up. The nurses were AMAZING - just sprung to action, calm but swiftly they switched everything off had steriods and antihistamines pumped in and 30 mins later I was much better. They agreed to start at a lower increment but we had to stop so I could go for xray. The xray with dye was really interesting I was looking at the screen - watching it pump in and seeing my heart beating. What a sight. The brilliant news is my line had not moved nor was failing (as I'd feared) and so it stays in. They let me go back to the chemo unit and keep going with the Ritux. They shut at 6pm so it was a race against time, we had to start at the lowest level again, but eventually got 70% of the dose into me with no more dramatics!

Its was a really tiring 2 days but this morning I am on cloud nine - pretty much got the 1st dose done. The line is good and can stay! We know how I react and when. We don't know why I swelled up, but we can't know everything. I have so much energy this morning it feels like I'm not even ill! 

Hope everyone has a cracking weekend!

Wx 

Hi Wendy,

Wow, you sure have some fun (??!!**??) - glad you got there in the end with the Ritux - dramatic or what!

I hope it does the trick for you, it's a quiet weekend for me after last weekend's trip to Nottingham, this weekend it's football football football on tv, oh, interspersed with some motor bike racing and the odd film. But I must squuze in a walk or bike ride tomorrow morning, gotta keep fit to be a couch potato. Must learn how to spell squeeze too. 

Sorry to hear about your problems, Wendy but I hope it's all sorted now.

Dianne, I did as you suggested and bought some Caneston. But it only kills certain types of candida. Two days later, I'm not so lethargic but my gastritis feels worse. ALL the internal tubes below my waist level feel inflamed. I even feel like I had a kick in the groin a week ago and it's still tender.

I've eaten little. Actimel when I wake up then one day ground chicken in breadcrumbs with runner beans and later tin of peaches. Yesterday, just some minced lamb. Plus my usual medications and vitamin/calcium/cod liver oil additives

I'm sleeping badly due to pain in the shoulder and hip I'm laying on, plus the coccyx.. When I sit watching TV with head on pillow , ,my neck muscles stiffen and I have to move my head manually at first.

When I wake up my tongue has a white coating on it. I think that still suggests candida. I'll have to see the doctor next week but I might try a glass of Bicarb today.

"Doctor, I think I've got Clothing Disease. My breath comes in short pants and my tongue has a coat on it!"

Chris 

How's Wendy? Hope the treatment's going well this week.

I saw GP this morning. She's sending me for an X ray re my neck. And some pain killer tablets. These used to be used as anti-depressants so they must be strong.  So I should cheer up one way or another.

And now the compulsory jokes. Half a dozen teens were smoking reefers in a living room. Suddenly the police started breaking down the door. In desperation, they stuffed all the "ciggies" inside the cuckoo clock. The police burst in and searched the place.They found nothing and were just about to leave, when the clock reached one o'clock. The cuckoo popped out and said "Hey! Like...what's the time, man?"

Two crocodiles dozing in the jungle. One with an eye open, the other with his mouth open wide. The latter would occasionally see a fly and snap his jaws shut - swallow the fly and open them again. Apart from that, all was still and quiet.. The crocodile with one eye open turned to the other and said "It doesn't seem like Thursday, does it?"

The teacher asked Gary Jones, "Who knocked down the walls of Jericho?" Gary said "It wasn't me!". The teacher went to Mr Jones and said "I asked your son who knocked down the walls of Jericho and he said it wasn't him".   Mr Jones said "If my son says it wasn't him, then it wasn't!"   The teacher couldn't believe their stupidity. He told the headmaster "Not only did Gary say he didn't do it but his father said that if Gary said he didn't do it, then he didn't."  The headmaster said  "Don't worry about it. Just claim for the wall off the school insurance!"

A mother called her son. "John, hurry up or you'll be late for school."  John said "I'm not going to school ever again. The kids there hate me. They call me names, pull my hair, punch me and throw my books all over the playground. Give me two good reasons why I should go."  His mother said "Well, firstly you're 43. And secondly, you're the headmaster!"

Hi all

Unfortunately I've not been too well. rash started at weekend and swelling since Tuesday. Started aciclovir and cotrimoxazole on monday morning. At 1pm my face flushed and the rash went balistic. I went to hospital and after 5 hours they gave me more antihistamines and stopped the cotrimoxazole. But the rash started before I started them, hey ho, worth a go. 

Then Tues morning I woke with the rash all over, angry and itchy and my face swollen beyond recognition. My eyes were almost closed and i looked like the elephant woman.  So called back the hospital who told me to come in 2.5 hours later - a scary 2.5 hours and then made me wait 1.5 for the doctor to arrive. It was horrible enough to wake up to that, never mind waiting. They gave me steriods and more antihistamines and suggested I came back the next day. Its the 3rd time its happened, but the other times I was in hospital. This was the thing I've feared the most. Thankfully the swelling eased a little during the day.

Wednesday morning and guess what, my face had swollen back up again, just as bad as Tuesday. They told me to come in at 11.45 and so at 1.30pm the doctor arrived. More waiting, which I just try and understand are becasue they are overworked and have emergencies. However its happening every day so my patience is really being tested. Tthe Ritux was cancelled for today Thursday and a possible on Friday.  I'd had 2 long 9 hour days in hospital on Thurs and Fri the week before, then waiting around feeling rough M-W so they agreed I only go in today if my temp goes up.

When I woke this morning my face was swollen up again and just as bad as Tues and Weds but no temperature and a day off hospital!!!! Hurrah. No babysitter either, time to myself - lovely.  Hoping I am okay for Rituxumab tomorrow.

Yorick - assume you know about this one already but have you heard that Tumeric can help candida? Came across it on internet - so guessing you have seen in too. If not google it as it seems some people swear by it.

Fingers crossed for tomorrow, off to apply more E45 in obscene quanitities!

take care all

Wx 

Hi Wendy

So sorry to hear you've had the reaction again. It must be terrible for you. Despite the advances in medical science, there are still too many areas where they don't know what the hell's going on.

Everyone on this site is wishing you well. I'm making my own incantation . "Izzy wizzy, let's get busy, make Wendy better!"  It's an old chant but it might just work. :-)

I hope next time you write ir's to say you're feeling great with a perfect complexion.

All the best

Chris

Hi Tricia

These messages are a Chuckle Brothers routine. "To me" - "to you" - "to me".

There's a disease going round among doctors called Disease Blindness. If they can't actually see germs, they can't exist. Probably started in WW1. "Doctor, I think I've been shot.  A Gerry pointed his rifle at me - it went bang - then there was a pain in my chest and this hole appeared."   -  "Can't see a bullet so you can't have been shot. Probably scratched yourself on that nasty barbed wire. Put this sticky plaster over the hole and take two aspirin."

I don't understand whether blood components are good or bad. Even if something is below normal my haemotologist says they're within acceptable limits. When I told him 4 months after chemo I'd had 2 attacks of hypothermia just by getting into bed in a warm room, he said "But no night sweats?" .

The trouble is they are taught from the medical bible. And if a heretic stands up and says "Ulcers are caused by infection, not stress or stomach acid" they call the little green van to wait outside with the engine running. "Dr Blenkington-Smythe told us it's caused by acid so it must be. He's an expert."

In the 1970s I had a mini. I told a car fitter that it seemed to run better in the rain.  "Can't do - water in the petrol - ruin the car."  Then a couple of years later I heard that a manufacturer was experimenting with a small water reservoir on the side of the carburettor because they found a little water vapour in the petrol mix made the car run better.

When I saw my GP this wek, I told her about the pains in my joints waking me up. So she's given me an X-tay chit for neck and shoulders and some tablets. She said these were used originally for anti-depressants but would help my neck. Took one last night and slept for 13 hours. Pains slightly less today but neck still seizing up. Looked on leaflet for intended use and it only lists anti-depressant. Took one tonight but couldn't sleep. Hence I'm writing this.

Maybe she thinks it'll stop me moaning. Not a chance, Mrs Warboys. last week I again contacted Asda to suggest they bid for the hospital food contract. Budget is £6.50 a day per patient. I could feed a patient for less than £6.50 with items bought RETAIL at Asda (or Tesco etc.)  Cornflakes and milk, 2 slices of toast.. (50p?)Then lunch  vegetable soup (20p) Shepherds pie/fish pie (£1.50) with quarter piece of cherry pie with half a tin of cheap custard (50p), 3 fish fingers with small portion of baked beans for tea.   But I'm not holding my breath for a reply.

And I requested Dettol to sell a diluted version in a spray can. When you dab a bad cut with Dettol and a clean cloth it hurts. Spray on - not hurt. Simples! Also arms could be sprayed before applying the BP cuff to stop cross-infection.

My God, I'm such a genius and they're all jealous. That's why they persecute me. I wouldn't have this paranoia if they didn't persecute me.

I told the doctor I keep thinking I'm Jewish. He said it's all psychosemitic.

A fond farewell.

Chris 

Hello Peeps

I Googled my joint pains and guess what. There loads of people who have had chemo and ended up with joint pains. They too have doctors who don't consider this a side effect of chemo. Well, shiver me timbers!

Eventually diagnoses of osteo-arthritis, fibromyalgia and bursitis have been given. The pain in my coccyx is apparently Weaver's Bottom. (Ooh, matron!) Most people  have been given pain killers but one medical site says that an injection of anaesthetic and cortisone should keep one pain-free for years.

My gastritis seems improved since I've kept carbohydrates and sugar to a minimum. I had taken Canestone previously followed 3 days later by a pint of sodium bicarb.

I took my second "anti-depressant" yesterday at bedtime. No 13 hours sleep this time, Just 5. Maybe we should replace hospital specialists with a patients' committee - people who have the same symptoms who can base your treatment on their Internet searches.

Maybe some bright spark will come up with a computer programme in which you can load your symptoms, answer more questions and the computer tells you the possibilites. Then a doctor requests scans, xrays or tests based on the results.

As my biology teacher once wrote on a boy's exam paper that was full of inaccuracies, "Who'd be a sailor?"  (No, I don't know what he meant either.)

A hospital visitor was told that his friend had got worse. He asked -'Didn't he get my "Get well soon" card?'

My visits to the hospital are like a blunt pencil. There doesn't seem to be any point.

A fond farewell

Chris