Hairy cell leukaemia

Hello all,

My name is Gene Hammonds.  I live in Tennessee.  I was diagnosed with hcl on August 15, 2010.  I'm told that I've probably had the disease for about two years.

My symptoms were swollen and very sore ankles, legs, wrist and elbows.  I had fever and really bad night sweats.  I also had a rash on the palms of my hands, was short of breath and stayed very tired.  I had knots in my lower legs that felt like large boils under my skin.  They found the hcl by doing bone and bone marrow biopsies.

I had treatment with cladribine by injection for two, three hours a day for five days in a row.  I didn't really get sick, just very tired and some fever.  It has now been thirty four days since my first treatment.  My blood counts were very low before treatment and went even lower with the chemo.  My blood counts are now near normal and I feel much, much better.  The biggest problem I have now is a bad skin rash that starts out like a really bad sun burn then itches badly and peels over and over.  The doctor thought it was the antibiotics which they took me off of.  He has since given me a steroid shot and put me on prednisone which hasn't made any difference.  I'd be interested if any of you have had this problem and could offer any advice.

I'm very sorry that you all have hcl, but if we had to pick leukemia we know which we would choose, don't we?  I'm glad to find this group and look forward to communicating with you.

I'm a sixty three year on male in fairly good condition.  I'm surprised to find that so many of you are much younger and have hcl.  I'm told that my hcl is likely from my handling of defoliant (agent orange) in Viet Nam.

I'd be interested to know if any of you have been given any reason that you have hcl.

Live all you can and cherish your friends and loved ones.

Gene

Hello Gene,

Welcome to "the" club. I was diagnosed in April 2009 and after treatment with Cladribine, Mabthera ( a Tumor Vaccine drug ), 8 blood transfusions & massive doses of all sorts of antibiotics and a 10 day stay in hospital, I went into remission in late May 2010. I don't see my Haematologist again until 3/12/10 with a blood test just before that. I was very low with all blood counts when I was diagnosed, to the point of almost being bed riden. My haematologist stated that I  would more then likely take a lot longer to feel better as I was a very fit man and used to run marathons, then my body just sank so low. I used to have bad cramps in my calf muscles & toes as well as night sweats, brusing on my legs, sore patches on my skin that were very sensitive, chest pain which was a lack of oxygen in my blood because the haemoglobin wasn't carrying any oxygen to my heart muscle and as a consequence, I could always actually hear my heart beating in my ears which is very disconcerting. After all this, I am still very weak in the legs and get tired. The only rash I got was when I was in hospital which was as a result of the Chemo and Antibiotics. All my joints suffered from Athritis however, the Arthritis has subsided a great deal to just be stiff in the joints. I still get bone pain in my legs and ankles, which my Haemo. stated I would probably get for some time.

Yes, this is the Leukaemia to get if you must get one however, it is still worrying not knowing when it is going to return. I fit the stereotype in that I was diagnosed 1 month off my 50th birthday and it had probably been coming on for up to 2 years. If you read all the web based literature on HCL, it does state that chemicals may be a cause however, know one comes out definitively and says so. In my case as in most cases, they simply don't know the cause. The only chemicals I have ever come in contact with are the usual household sprays etc.

If you are feeling good, that's great. i must just be taking a bit longer to come back up again.

Take care.

Regards-Steve

Hello all

My name is john I am 40 year old male, how was diagnosed with HCL in March of this year (on my 40th Birthday in fact!) I had been having blood tests for over a year due to low Platelet counts (114) & low hemoglobin count (11.5) until HCL was diagnosed.

I feel well in myself & the low blood counts were only picked up after a routine blood test for another minor aliment (So not sure how long I have had it for)

I have been told by my Hematologist that treatment will not begin until my platelets are below 100 & my hemoglobin below 10. Is this the norm?? I have blood tests every 8 weeks to monitor this.

Anyway thats me! but the reason I have come on here is to meet other HCL suffers & hear some of your stories. I feel a little alone in all of this & Im glad to have found some others with the condition. At first when you hear the words 'Leukemia' you tend to think thats your lot & you read so many differing things on the internet! my Wife & I have really been through the mill over all this & Im slowly getting my head around it all. But its time to get positive now & stop crying into my beer!!! for my sake, my wife's sake & my two little girls sake.

Hi John,

Welcome to the club. Sorry that you've joined but it's not the worst club in the world.

You don't mention where you are in the world but where ever it is you'll have probably been on a similar emotional ride to the rest of us. I'm sure you've read most of this thread so will have picked up links to blogs, forums, etc. along the way. 

Crying into your beer is a necessary part of dealing with this but whilst doing so be glad that you're holding a beer in the first place. 

There is a lot of support on here and at this forum for both you and your family. There's a map here of some of the locations of fellow sufferers and feel free to email me direct. 

If you're ever in London look me up, we can go get a beer to cry into. I'm yet to meet another HCLer face to face.

-Rich

Hi John,

Welcome aboard.... even if you wish you weren't eligible to out 'hairy' club.

I was diagnosed in 2003 aged 55, had a six week course of cladribine, been in full remission ever since and not on any medication.

I guess you've heard that of all the leukaemias, hairy cell is the one to get as it's usually highly treatable.

You don't mention your neutrophil count, I thought that was a key indicator of whether you need chemo as neutrophiles are a key part of your defences against infection. Anything from 2 to 6 is normal, mine were down to 0.8 when I had chemo.

The other thing to remember is that HCL is a chronic slowly-developing condition, so treatment may not be at all urgent and in some cases is even deemed unnecessary.

Hope this helps. Usually good hearing about other people's experiences, I guess I was fortunate as HCL hasn't stopped me doing things, but of course emotionally and psychologically it takes some coming to terms with.

Regards, Frank.

Hi Rich

I am based near Southend-on-sea in Essex, so not a million miles from you. I have found this site & this forum in particular very useful & quiet encouraging! I kind of felt out on a limb as after my diagnoses I was just left to it & told to come back every 8 weeks. I don't feel unwell or sick, so I feel like a bit of a fake really when I tell people I have Leukemia! they expect me to be very unwell!!! I guess its a good thing that treatment is not required yet, but a part of me would like it out the way & be on the road to remission. The treatment plan will be pentostatin when it begins, but my hematologist has suggested this may be months or even years away. I also have a slightly enlarged spleen (which I understand is normal with HCL) So for now I guess its just a case of life as normal, or as normal as it can be! I tend to forget about it from time to time but then it just hits me again with the same enormity as when I first found out. It was good to hear form you

Take care

Hi Frank

Thanks for replying as you can see from my reply to Rich above, my treatment plan will be pentostatin & may not be required for months maybe even years. To be honest I have never heard my hematologist talk about my neutrophil count? which is quiet concerning!! I am due to see her next week so shall quiz her on this one (its amazing how quickly those 8 week appointments come around!) but I do know that my white blood cell count is in the normal range, which is good news I guess. I also have an enlarged spleen as a side effect of HCL. But the positives are that I feel very well, still swim, cycle & keep healthy & hardly ever suffer from colds & flu etc... all good signs I guess

Take care Frank

Hello all new and existing HCL club members, hope you're all well.

I've had my hip replacement! Its only been just over 2 weeks and the pain is no fun, but I'm getting better every day. My neutrophils dropped to 1.1 (not great but not that bad) and I had to have a couple of GCSF injections to push it up so we could go ahead with the op.  Not at the stage to say 'pleased I had it done' but I'm sure I'll get there.

You might think this crazy after having had a hip replacement but I am worried about an impending bone marrow aspiration. It really blooming hurts and its scary. Now if you've had a hip replacement you'll think it should be a breeze - but its what it could lead to which is scary (as well as the pain). I'm seeing my consultant in a couple of weeks to check bloods again and decide about the bone marrow test. I'm really not sure if I should leave it until after xmas. Suppose good news for Christmas would be lovely but bad news would put such a dampner on it. Maybe I'll have no choice! 

Well I've 2 weeks of life to live before then,

Take care all!

Wendy x

Hi Wendy,

Glad to hear that your hip replacement op went well, and yes, I would have thought in comparison a bone marrow biopsy would be a breeze..... so fingers-crossed the results are good, and who knows, this time next year you could be abroad skiing.... maybe you already are out there enjoying our wonderful British mini-freeze?

Ah yes, I remember injecting myself with GCSF/neupogen during/after my chemo, heck, that was way back in 2003, seems like a dream now....  and your neutrophil count of 1.1 doesn't sound too bad, mine has fallen to 1.7 and seems to be going down steadily, but, here I am, the docs keep saying  'Come back in another 6 months'.