Hairy cell leukaemia

I'm sorry that I never heard of this variety of leukemia before, but I just want to wish you the best of luck with your treatment, and with beating this. How are you feeling? It looks from your photo like you have some loving support - and that is very important. lots of love, xxxx Penny

Hello Penny

HCL is a form of non hodgkins. It is pretty rare - I am told. I'm in remission but struggling. I cannot be cured. I am struggling just waiting for it to return. It will return - it's just when. It is eating me away. My confidence has plummeted and I guess I just needed to hear someone say 'I had that and I understand'.

Thanks for your kind words - I do have support and know I am lucky to have this.

Hope you are well.

Wendy x

Squif

I appreciate your kind words. The timebomb analogy is spot on. I can hear it ticking all the time. But I cannot see how long I've got. If I use my head I know I have to live my life - I know a bus could take me just as easily. I'm sure you know its not that simple. I am afraid to let my guard down.

I am not happy at work and think I need to make this change. I have only been back to work for 6 months though. I don't want to give up too soon. I would hate to fall ill again and think - what a waste. I should have done this and that.

You are very brave to have coped from being so you young when first diagnosed. I wish I had your strength.
You take care and thank you for being so kind.

Wendy x

It was good to read your blog and im sorry to hear about your diagnosis being terminal. It sucks doesn't it??? Me too. I hope that you get a response from a fellow sufferer, my cancer is breast. Anyway thought i'd say i have just began the process of retiring on the grounds of ill health. If you have a pension it could be worth your while looking at his option. Send me a PM for further info if you like. Welcome to the site. Jools x

Hi Wendy,
I've only just found this site! I too have HCL - I got it in 2003 and had treatment with 2cda (cladribine) - I guess you did too. Anyway I am perfectly healthy and go for checks every 8 months or so. As you know HCL will come back and dealing with this is quite hard, but in time you will learn to relax more and not panic everytime you get a cold and think oh god its coming back! But it is not TERMINAL. It is a chronic condition as in it is a very slow thing, and even when it does come back that won't be it....you will just have to be treated again, and then it will go away again. There also new treatments being worked on BL22 for instance, so it really is not a gloomy picture for us - my doc has told me I should live a life as long as anyone else unless as you say you get run over by a bus or have a heart attack! Also if cladribine doesn't work for you long term, there are already other options to try ...like Pentostatin.
I think the scariest thing is knowing you have leukaemia!!! I think its the word that just terrifies you, but really we are so lucky to have this type - you can live with it and have a completely normal life.
What it has done for me, is to appreicate things in life and not waste time with petty things, you realise that having 'things' really don't mean much if you don't have your health...its been a real shake up...but in a good way. So if you are not happy at work ...go for it and change your job and do something that makes you happy.
How did your treatment go? Again we are lucky in taking chemo...hair didn't drop out!
I know quite a few people here who have HCL - we talk on the Leukaemia Care site...although people don't tend to visit unless there is anything to report, but we keep each informed as to how we are. Also try this site www.network54.com/Forum/263810 it is the States and there are people from all over the world on there, actually its quite informative and you can ask questions about your condition/treatment - there are some very knowledgable people on there (not medical) ...try it!
I see you haven't logged on since May, so I hope you get this, you must feel very alone in not finding anyone else with this odd HCL!!! Hope to hear from you,
Nicky.

Hello Nicky

It's great to actually meet someone with HCL. especially when you are so positive. However some of the things you have said are a little confusing as my experiences so far (and my personal outlook) are somewhat different.

I also had Cladribine but it did not go so well. Following intavenous and sub cut treatment I became very poorly and spent 3 months in hospital. 1 month of which in intensive care. Things did get bad. My body started shutting down and I reacted to everything - even the plasma transfusion. My consultant was wonderful and she said I'd had it particularly hard - they even took photos of me and sent them off around the country for help. My skin rashes were shocking. My lungs reacted and i was incubated for a while. My body swelled so i could not move my limbs nor open my eyes. My liver was pickled and my temps were shocking. I was having the shakes when my temps spiked and it was frieghtening. I think the worst thing was the isolation. I was alone and could not even touch my family. They had to wear masks and gloves. I was torn up with the need for their love which was kept away from me becasue of risk of infections. I cannot tell what what that's done to me. I am so clingy now. Constantly need physical contact and cannot be on my own. Then when I started picking up they started Pentostatin - and i did loose my hair. Mainly it thinned but i was pulling out chunks so stopped brushing it.

I know it's not classed as terminal - but we cannot be cured and when your husband is called in to see you several times on the basis they thought I was leaving this world...I know it is capable of killing me. I have to say it's had a bloody good go at trying to take me so I consider any risk of it returning just as life threatening as a terminal diagnosis. Not being cured is too frightening. My last bone marrow aspiration showed signs of HCL. I cannot cope with knowing its still there. I wish I was as positive as you but it's still too raw. You say a nornal life is possible - but my normal has gone - my confidence, my independence and my future is no longer in my control. I had been brought up to work hard - everything was in my grasp - I can be whatever I want to be. I can make the difference. I guess with this situation it's not in my control.

I am doing something about my job - and I thank you for that. You made me think its simple than I thought. Wish me luck, I have an interview on Monday. I am nervous.

I know I need to deal with this better. I do think I appreciate the important things more now - my husband and family are these things. But I have just not got past the fear. The thing is my Dad died from Cancer the year I was diagnosed. I miss him desperately. I feel guilty that I survived and I'm still not happy!

I will definately look at the Leukaemia Care site and hope some of your positivity will rub off on me. I appreciate your encouragement.

Thanks again
Wendy x

Hah! There you are Wendy, I've been checking daily ....I was just hating the fact that you were thinking you were all alone out there. Fear not...we are here for you! I was quite lucky to have found the American and Leukaemia Care site before I needed treatment so was getting lots of advice from fellow HCLers. So straight away I didn't feel alone, when you are told you have something rare it makes it sound even more scary. Some haemo/consultants have never had to deal with a case!
Now what you went through sounded really awful and is not the norm. I did have some problems in that they think I was allergic to septra/antibiotics which messed things up a bit and I had a fever, colourful rash (all came to have a look!) and awful swelling (wouldn't have recognised me...and not attractive!!), high heart rate/low blood pressure, and yes they had to call my other half in to hospital late at night. The consultant from Intensive Care was called down but she said there was nothing she could do....thanks! Your condition obviously was a lot worse. Do they know why it all went wrong? Its important to know that for next time. I wonder if you managed to complete the 2cda course? And I wonder why they put you on Pento so soon? There are so many questions, I wonder also if your consultant had treated HCL before? I can see now why you consider it to be life threatening.....another reason to find out what exactly went wrong, because if it was the 2cda that your body couldn't handle then they would have to look at other options for you, but if like me it was an allergy to one of the other drugs you were taking that started you off on a downward spiral then that needs looking at too. How often are you having bone marrow aspitrations? Are your blood counts OK at the moment? I always ask for details of my blood counts and log them so I can see what they are doing - a control thing I think!

All the nurses at Cheltenham Hospital were telling me when my counts went down to nothing and was neutropenic that the Doc would stop the 2cda (as they do with chemo for other cancer sufferers) but no, apparently not and they were gobsmacked when Doc said carry on giving it! HCLers counts are supposed to crash to kill off all the hairies, sadly it kills all the good cells too - bit of a bugger!!! And, yes the shakes are common - I had those too, the injections to stop them were so nice and welcome - wonderful feeeling when the shakes stopped! I too got my own room and wasn't allowed to have flowers...bizarre!

And, I know exactly what you mean about being clingy ..... since all this happened I have not wanted to go abroad on holiday, I just wanted to be at home with Andy and the dogs, I'm quite happy to visit family, but I have no inclination to leave the country! I am just so happy to be home and content. People often say gosh you haven't been away for years ..what you need is a break! Oh no I don't!!! But its hard to explain that to anyone else, the words come out but really they haven't got a clue what you mean.
But as you say your husband and family are what counts now. I was sorry to hear about your Dad, it so hurts doesn't it, but I'm sure he would want you to make the most of your life and be happy. You had a double whammy in losing your Dad and having the diagnosis, that would be hard for anyone...allow yourself some time to heal ..on both counts. Have you tried talking to the helpline here or at Leukaemia Care - they are very supportive I have heard.

Waid and Tim on the American site have loads more experience than me, Tim in particular has also had his problems...but they are so willing to share what they know. they have a really good understanding of HCL. It really does help to have contact...you just don't feel so alone, and even emailing and getting it off your chest helps (I feel that you have had it all trapped inside you) .... they have all been through treatment in different ways and can offer so much..... there are even people on there who have Hcl in their bodies but not sufficient to have treatment....and have gone for years on a watch and wait...not everyone needs treatment. There is a person called Lou who I think is now up to 16 years since his last treatment! It can take years to come back, do you know what percentage of hairies you have? The UK site is a lot quieter. But if you have a look at Nick's story, he could not get his head round having HCL, and now he has got married and has a new baby, finally he has chilled and felt more relaxed.
Why don't you cut and paste your email above and put it on the American site (just ignore the political strings!!!), I'm sure you will get lots of support, help and advice.

You said your future is no longer in your control........ OH YES IT IS!!!! Take control girl...you already made the first step today by going for your interview ...hey!!!! Doesn't matter what the outcome is ...you made that decision...good for you. I'm really pleased for you. Hope it went OK, might not have been exactly what you wanted but you got out there and went for it - brilliant. You say your 'normal' has gone, well you have been through an awful lot, but I'm sure you can come out the otherside...you just got a bit lost for a while - you will find your way again. Step by step (there's not many steps - honest!).

There is a good blog here: http://hcljournal.blogspot.com/ he also had his problems dealing with it, but his last blog says it all!
A lot of people do just sail through treatment, person I know in Lancs - Frank....he didn't have a single side effect - so it can go well.

Well I feel like I've just written a book - sorry! Your email was much more structured than mine, I ramble and jump all over the place so apologies again!

Any questions just fire them off...always here for you.
Nicky.






Don't waste your life waiting for this to come back

Hi Wendy just a quick hello to see if this is working if i have got it right (that would be a first he he) we can have a longer natter. I have been brought here by Nicky Clark (she says jump i say how high Marm) all the way from Robs site in America just to put your mind at rest. There is life after HCL you will be fine there is so much that can be done for us. although after chemo i found that i couldn't play the piano anymore but i remembered that i couldn't actualy play it before i was diognosed so that wasn't to bad. Anyhow don,t worry to much there are lots of us out here and we all have plenty of storys to tell you keep well
....Bobby....

I was diagnosed in 1992 with HCL at the age of 28, i have had various treatments but i am still very much alive kicking (and sometimes screeming).
The longest i have been in remission for is 10 years. I am currently being treated with pentostatin and all is going very well, my counts are normal and the only time i do not feel well is after the chemo for a couple of days. Ihave had 12 of 15 cycles and these are given every two weeks.
I try and turn a negative into a positive- you will know what they are. I know there are down sides but these have to be overcome for the sake of our own sanity and others close to us.
HCL has not stopped me from acheiving any of my goals and if anything it has made me a better person.
I live in North Wales and i have yet to meet someone with our condition so we are unique.

All the very best and hope to hear from you,
Dave.

Nice to see you both on here!
Bobby - what a nice message you left for Wendy.....well done mate!!!
Dave - I used to live in Corwen and also Menai Bridge....you anywhere near there I wonder. Which hospital do you go to? You were very young to get HCL ...but hey great remission! Not much pento left to go now then, have you tried 2cda...wonder what you thought of the comparision?
A group off the Leukaemia Care site did meet up a couple of years ago...I wasn't able to go, but from memory Jenny, Frank and Richard and maybe ALan met in the New Forest for a weekend away....so contact is possible!! They are all doing fine now too.
Bye for now,
Nicky.