Hairy cell leukaemia

Hi Frank I remember when the torch was over here in Oz and at the time we were touring down South. We came out of a street in a place called Bunbury to a massive queue with police and people every where . Now this is a place where queueing is not known so we had got out of the car and when we found out that the torch was coming through the town we ended up sitting on the bonnett of our car cheering as the runners went by. It is kinda speicial i think although there was a little bit of me that wanted to grab the fire extinguisher he he

Hi Wendy thanks for the vote it has been logged and counted. Now that i have a bit of a ground swell for my candidate FRANK ( Peace be upon him) i'm telling every one he is Muslim just to get the Bradford vote. I am taking the Party bus across to Oxford to rally support from Florance and her Runners Party wish me luck.

A quick laugh before i go

Have a great week all

Bobby

Hi all,

I was diagnosed with HCL in Dec 2011, and after a 5.5 week stay in hospital I was released having missed Xmas and New Year. Finally on the road to recovering my strength and being reduced to the strength of a new born baby, and yesterday did an 8 mile bike ride in the best time I have done in years. It goes to show that I was obviously suffering the effects of the HCL's long before diagnosis.

Anyway I just thought I;d say hi and join the club and will be following this thread going forwards.

Cheers, Andy

Hi Andy

Let me be the first to welcome you to our club. The nosey sods on this site will want to know all kinds of info from you like age ,what Chemo you had,are you in full remission all that kind of stuff.

My age when i was diognosed was 52 that was 7 years ago i had Cladribine over a 5 day period and went into remission 3 months after. They told me it had probaly been in my system for 18 months its such a slow moving cancer. Again glad you found us no doubt more of the club will be welcoming you soon.

Bobby

I can hardly believe I have actually got here. I lost the password, then I found it and then the internet went down and then it came back up but the electricity went out ... and so it goes in dark Africa. Not even the sun shines here anymore. Just popping in to let you all know I am now almost over my fourth dose of pneumonia in six months. So no wonder my leucocytes were stimulated or excited or whatever they were. Still have very high ferritin stores and very high HB ... but at long last I have found a professor who actually knows what HCL is and I see him in Cape Town early July. I really miss chatting to all of you ... when we were on LCare site it was so easy for me. Now things are far more difficult. But you are all in my thoughts and I wish you all a very happy and specially healthy week. Love Dianne

Well it might be easier if I just post what I am planning to put on my blog in the next few days, it should answer all the questions!:

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I was diagnosed with Hairy Cell Leukemia on December 8th 2011 completely by accident which is usually the case as I understand it. It started after I had been laid low in November with a cold that seemed to linger. It was commented on in a few management meetings at work that I was looking pale, and in one case someone said possibly jaundiced.

I decided I would go to the docs which is unusual for me as I don't think I've been to the docs in 10 years prior to this. The doc agreed that I did look pale and it could be anemia, and a blood test was taken. That very night the emergency doctor turned up banging on my door at 23:30 waking me up as the results were apparently at dangerous levels and they wanted to check I was ok. After seeing I was ok and asking if I took drugs, and looking at me with disbelief when I said no (did I look that bad!), he left saying I was to see my GP first thing.

At 8am I was at the Docs and she said I needed to go to the hospital to get the full results. So I called my boss, explained the situation as I was on my way to work, and drove up to St Jimmys in Leeds. I walked to the ward I was told to go to, announced my name, to be told they were expecting me. I was whisked away, taken for further blood tests, and then admitted. I was shocked to say the least because at this point, no-one had told me why I was being admitted. I felt fine, sure I had been short of breath recently and a bit tired, but I put it down to the cold I had. To say I felt a bit scared at this point is really an understatement to say the least. Three hours later I was finally told by a consultant that my blood levels were so low they were almost non-existant, and that my risk of infection was so high they had to admit and isolate me while they discovered the cause.

The next day I was diagnosed as having HCL.To be fair I took the diagnosis in good humour, even making a joke which I think shocked the consultant as I suspect she was thinking there would be tears or something. Obviously the seriousness of the announcement hadn't sunk in, but after she left me I read the printouts from the Macmillan site she had left of what HCL was and the consequences. I'm not prod to admit I did have a little cry for 15 mins, who wouldn't? Leukemia, in any form, is a scary word. You assume the worst.

I read that info sheet several times that afternoon trying to get what positives I could from it and to prepare any questions for when the consultant would come back. Reading through the symptoms I realised I had actually seen many of them since the beginning of the year and never thought anything of them. Individually they could be put down to lack of sleep, iron deficiency, generally being unfit, but collectively they all point at something much more serious, how hadn't I seen it? The treatment was explained to me, 5 days of 2 hour IV drips of Cladrabine after which they would monitor and see if I needed a second cycle of it.

What followed was what can only be described as the most frustrating five and a half weeks of my life. Treatment was delayed a week as they weren't sure if Cladrabine made you infertile or not, so they arranged for the old sperm to be banked and frozen. Thats an incredibly impersonal process, and to make matters worse my health deteriorated very quickly at this point. I had fever, I got incredibly weak and my breathing was shallower. They didn't think that I would be able to produce a sample good enough to be frozen, but thankfully the little buggers down there were fighting and it was judged to be of suitable quality to be frozen. Just. Yay! Go me!

Chemo started the following day. In between the chemo I was pumped full of every drug imaginable. Anti-biotics, Anti-Fungals, anti-virals, blood transfusions, platelets, saline, drugs for pneumonia, drugs for just about everything. I had a temperature and they could not get this to stay down. Every 4hrs I was given paracetemol to bring it down. My heart rate was high, I had X-rays, CT scans, bronchoscopy and ultrasound scans to try and find out what was causing the fever.

Even after I had finished the chemo I still continued to suffer with fever. One minute I was cold and shaking badly with the chills under 7 blankets, then once the paracetomel kicked in I was red hot and pouring with sweat, soaking the sheets.

They asked if I had been to places like Africa or other remote places where I might have caught something. I hadn't, but they were treating me for it anyway. They were treating me for a form of pneumonia that you usually only get from cave diving! This went on for 4.5 weeks, Christmas came and went, New Year came and went, with the drugs taking a toll on my body. I went yellow, Homer Simpson yellow and I acquired an all over itchy body rash from one of the anti-biotics, before they ruled out every possible cause of it except one. A cold. The very same cold I had told them about when I was admitted. Doh!

They stopped just about all of the drugs, and slowly but surely, the cold cleared up, and 5.5 weeks after I was admitted, I was released. The worst part of the whole thing was the lack of things to do. Being isolated in a room you are not to leave, with a TV with next to no signal that was impossible to watch, having no internet connection and a non-existant mobile signal, quite frankly drove me up the wall. Sure I had DVD's to watch books to read, and visitors, but that's not enough. Hospitals need to get with the times, every room should have free TV, free internet, and good food. It would certainly make the stay more manageable.

To cut a long story just a bit shorter, I am now obviously well. My blood counts last week were the best they've ever been and I am classed as being in remission. There are some miniscule traces of the Hairy Cells in my blood still but thats to be expected. So life goes on.

I am in the process of rebuilding my strength. I left hospital five and a half months ago and I was as weak as a new born baby, I had wasted away in hospital. I couldn't walk 500m without a rest, I struggled to climb stairs, I couldn't run, I had lost 2 stone in weight; I was quite simply a wreck. For a reasonably active 37yr old it was the most frustrating thing I have experienced. Thankfully I am recovering quickly. Five weeks after I was released I went snowboarding, it was hard, I tired easily, and had to have shorter days on the slope but it was pure heaven.

I sat at the top of the mountain in the sun looking at the view, breathing in the cold spring air, and I thought to myself, I'm here, I'm alive, I'm winning. F*ck you hairy cells.

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I hope that answers all the questions in advance!

:)

Hi Andy, welcome aboard the hairy ship! 

Sounds like you've really been through it, and all so unexpected like a bolt from the blue. I guess you've been told that HCL is THE best leukaemia to get.... but after your trip, you're maybe not so sure.

You're out of the dark tunnel now, and life should pretty much go on as normal for many years. for example, it's nine years since I was treated with cladribine, and it's all been good - no medication required, no significant infections, and the only thing I've stopped doing is swimming and I was pretty rubbish at that anyway!

Fancy a bike race sometme? I go out with an offroad group most Fridays. 

PS I daresay you'd win being a youngster!

Hi Andy

Welcome to the gang.  Frank and I are the jokers in the pack. You'll get used to my strange rants (hopefully).

My big moan at the moment is this strange phenomenon in the NHS. Doctors' diagnoses -  my medical problems always have to be something that the doctor cannot treat  or they don't know the cause so it must be stress, age, alien abductions or any thing they can write me off with. Or disbelief that I feel ill when I should theoretically be well.E.g   I saw the haemotologist last year  8 months after chemo and said I felt lousy. Felt weak, had had cold symptoms for 6 months. So his subsequent letter to my GP said "The patient feels well in himself".

Have had swollen stomach for a few years with dispepsia and reflux. All the hospital specialists including gastrologist said food allergies. Couldn't be stomach infection - they're killed by the acid. Convinced my GP that it could be so she sent me for endoscopy. Gastro man furious but result was gastritis. Gastro man gave me 2 months anti-acid. He didn't know the cause. Only test for H Pylori. Not that. Discharged me back to GP.

Still got the problem. But have experimented myself. On Internet, a Dr Myhill in Wales says gastritis sufferers can have too much acid or TOO LITTLE.  Candida can also be a cause. Gastritis can prevent absorption of nutrients making the patient feel very weak. She believes this is a cause of ME.

In 2004 went to my prev GP complaining of total exhaustion all day. He said it was old age at 57. When I woke up with sharp pinpoint pain in the shoulder and hip I was laying on, he blamed arthritis (take paracetomol!) even though I could spin my arm without pain or clicking noise.

So, doctors, if you want that £60,000 a year pension, pull your socks up. 1 in 3 people get cancer now. How about my hospital employing an oncologist instead of an MDT who pool their limited knowledge. How about more research into natural remedies instead of expensive chemicals.

Now the humour.  A woman goes into her doctor's office to find a new man in the proverbial white coat.. She asks him to examine her breasts. He agrees and she strips to the waist.. After a few minutes of squeezing and pressing, she asks him what he thinks. He says "I think they look fine. But  you should get a second opinion from the doctor. I'm only the painter and decorator "

Hi Andy

on behalf of the north east contingent, welcome to the site!  I am however quite miffed with you already as 1) you're younger than me and I keep kidding myself I'm the youngest here at 39 and 2) you've answered nearly all of our usual questions already!  Don't worry, I've thought of some more :-)

It does sound like you've been though the wringer in the past 6 months but hopefully you're now on the upward curve.  You say your bloods are good, but what are they?  Neuts, Hb, platelets, WBC and monocytes are our favourite comparators as they give such a good understanding of where you are.

I was called back to the doctors in late Jan 2012 after a routine blood test showed a high white count and was told by the GP not to worry, but a second test had showed something unusual but she'd been asked not to tell me what that was!  I was lucky from there on in though as I live in Newcastle and we have the wonderful Northern Centre for Cancer Care up here which is a hot bed of HCL knowledge and treatment.  I was in the haematologist's office within 2 weeks and here I am four months later having being diagnosed, treated with sub cutaneous cladribine, through the fever and the rash (and the boredom of hospital stays!) and I'm now waiting on a bone marrow biopsy to see if I'm in remission or not. 

It all still seems surreal and almost as if its happening to someone else, but I'm sure that will sort itself mentally over time.  I was very unsure of joining this site as I didn't want to read pages of doom and gloom having decided on the positive mental attitude approach, but I'm so glad I did.  The people on here are slightly crackers, very supportive, answer all the weird questions you don't want to ask your doctor and between then have been through every possible HCL treatment, side effect so some one can always help!

What's your blog address?  I'd like to have a look if that's ok? 

For everyone else, I'm pleased to report that the septrin rash has finally decided to start going down after 2 weeks of incredible itchiness but I also have a yeast rash which the GP spotted, so have another cream for that! Takes about 20 mins to put it all on before I go to bed, lol.

I hope you're all enjoying the long weekend although as I'm still on sick leave it's all just like a weekend to me :-)  Stay healthy! 

Claire xx

I am also looking for Andy's blog so if he would be so kind as to give us that link, I am sure he will have a number of followers. Nice to meet your Claire. No, most of the people on this link have migrated from the Leukaemia Care site which went fut on us and it was a while before we all got up and running on the big M site. Nothing about gloom and doom from our lot. There is more than enough doom and gloom in dark Africa with our noble savages for me to get all het up about a little case of HCL. I look around me and I see how many people are starving, how many have no homes and live on the streets (and that is all the races), how many people die waiting in lines for a doctor at the hospitals, how many teacher have not been paid since January, how many homes are being repossessed, how many children can't go to school because no one can afford the education .... and I shudder. I can't bear to even watch the news anymore because my blood pressure goes sky high. There is a government official who has been suspended on full pay for the last nine years. In the meantime, another seven people have been appointed to that post and they are all on suspension on full pay ... it just boggles the mind. Nne people being paid to do one job - 8 of them sitting at home on full pay. And that is just the tip of the iceberg. Both my friend's sons were mugged in the same week (for a mobile phone) another friend was stabbed walking in the park for her little music thing she uses when she walks, my sister wsas robbed and my mother's neighbour of 84 was gang raped. All in this last week. How I long to live in a country where there are laws and where the government is held responsible. We all paddle our canoes down these sometimes gentle and sometimes very stormy rivers ... but we keep our sense of humour going. It is just after 3am and I am on the internet (it seems to work in Africa when others are asleep). Of course, I did not get up specially to play on the internet, but I had another (damnit) night sweat with terrible nausea. Seems to be the norm for me over the past couple of weeks. How are you all ... Bobby, Frank, Mark, Florence ... all those from the LC site. I sure do miss our conversations and the jokes but hopefully that will all be back soon. Take care all of you. Dianne (beating my drum in the jungel) ...PS One day when I feel like it ... I will tell you about HCL and South Africa. Your minds will do a backflip.

Hi Dianne,

Gee, you've convinced me things are better over here in Britain compared to down there in South Africa. If nothing else, the constant threats must take your mind off the hairies! Over here we get the odd tale of some bignob suspended on full pay for a year or two, but they don't replace him with eight more! We do have a few thousand people on tax-free salaries dished out by the Government, who keep telling us "We're all in this (debt-crisis) together"... but of course some are more in it than others.

Glad to hear you've found a medic who is an exopert on HCL down there, hope he or she sorts things out for you healthwise.

Meanwhile, here's a few funnies that have just winged their way to me: