Hairy cell leukaemia

HI burnc,

I've not been on this forum for ages but I had HCL too back in 2008.......when I was 28 so beat THAT for the youngest person to have gotten HCL on the forum! Not that this is something one should brag about.........

I'm 36 going on 37 in June and have been in remission ever since. I thought having HCL would entail the typical horror story about cancer I usually see on TV: excruciating nausea, hair loss, etc but it wasn't like that at all because the treatment (Cladribine) targets cancer cells far more than other treatments for other types of cancers. Other cancers require drugs that basically act as hand grenades inside your body destroying cancer cells AND healthy ones at the same time which is what makes you quite ill.

Not saying this was a walk in the park but it was not what I thought it was going to be either. As Frank said: if you had to choose, you'd really want to choose HCL.

Hope this helps

Nicolas

Hello burnc - welcome to the club!!  I see you have already had some very warm welcomes and plenty advice.  Well - I was diagnosed end 2009 - had my cladribine in January.  Only advice I was given as a "female" was to take care about colouring hair - which I didn't do and waxing.  Mind you, I carried on with the waxing with great care though and if you do wax you will find your skin is thinner so be advised to use wax for sensitive skin.  Also be absolutely fanatical about hygiene because if any infection gets into your pores you may have problems especially as your neutraphils get low.  As you already know, your hair doesn't fall out as such but I have noticed that I do have quite a bit of hair loss especially when I wash my hair.  Anyway, it isn't noticeable as I'm sure it re-grows quite quickly at least we don't suffer like other chemo patients.  Anything else you want to know let me know.  Apologies I've not been back to the site for a week or so but have had probs getting into it.  Will be a more regular communicator from now on especially as I notice some of my "old" friends from LC are here as well.

Hi Mark & Frank!!  I think Dianne is connected here or trying to anyway - I'll check with her to see whether she still has problems.  I've just about given up on the LC site.

Take care one and all and good to meet new "hairy friends".

Florence

Hi Florence, Good hearing from you again, if only I'd known I could have waxed when I had my chemo way back when...... and you reckon Dianne may soon be on this site too?  The latest news from the LC site is that they hope to fix it soon... but we've heard all that before, so take it with a large pinch of salt. Whatever else, you really need to be notified when folks post something on a thread you're interested in, and thankfully this Macmillan forum does so.

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Hi Nicolas, Likewise, good hearing that life is still good with you, keep it up! I'm doing ok, and occasionally seem to have far too much energy, like last Friday, up at 0630, bike ride in the morning, then a surprise trip to an Eagles tribute band gig in Colne in the evening, I was buzzing till 0130 when I got to bed, a 19 hour day... most unlike me... but wouldn't you know, I woke up at 0630 again...

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Hi Claire, I'm glad that you've found our comments and advice helpful and reassuring, it will take time for you to come to terms with everything, but life goes on... and it goes on well with you pretty much able to do and enjoy everything you did before the hairies came along and made a nuisance of themselves.

Regards, Frank

Hi Frank

Yes - it sure is good to be on an active site where you get notifications of anyone else's posting.  I've contacted Dianne and sent her the link so hopefully she will be joining us soon.  I know she has given up on the LC site as well.  Pity you didn't know about the waxing eh?!  What a difference it would have made to your life let alone your appearance - he! he!

Claire - hope you are keeping your spirits up or at least your chin!  We've all been there and back with varying degrees of setbacks or otherwise.  Keep in touch and let us know how you are getting on.

Pouring with rain down here today which is most welcome although we've had a fair bit recently but probably need it in the reservoirs and rivers.  If we get enough they might lift our hosepipe ban - I can dream can't I?!

Take care everyone

Florence

Hi all

thank you for all of the new helpful hints and tips, especially on hair care!  I am however even more gutted to find out Nicholas was 28 when diagnosed - my youthful crown has been well and truly stolen!

So, an update.  Went off to hospital yesterday to get my bone marrow results and funny enough, they confirmed hairies are alive and well in my bone marrow!  My neutrophils had actually risen slightly from 0.9 to 1.3 but doc thinks thats a bit of a fluke, so treatment is next on the agenda.

I'm waiting to get a time / date for my chemo slot but hopefully it will be either Monday 30th April or Mon 7th May, and then its all systems go.

My better half and I had wondered if this had been hanging around for a few years undetected so we asked the doc to check my blood test history (I get quarterly bloods for something else) and apparently my last really 'normal' blood test was in 2009, so it looks as though our suspcisions are probably correct.

I'll let you all know when my start date is :)

take care one and all

Claire xx

Hi all!

Claire - I'm pleased the advice is helping!  Its great to feel you're not on your own isn't it? I might be wring but suspect the 7th might not happen. Its a bank holiday and in my unit they try to avoid national holidays and they limit (but not stop) treatment. But every hospital may be different. Whenever it is - best of luck and let us know how you are. Remember we'll all be around whenever you need us!

I have news too, neuts dropped again. So the MDT decision irrelevant now. Starting treatment next month. Wanted a delayed start. Consultant arranging my bone marrow aspiration. I need anasthetic (after double numbers of bone marrow aspirations its got harder not easier and i'm a wimp).  I guess its exactly what we expected really so on the whole not a surprise. Treatment plan changed (again!). Still the 5 days sub cut cladribine, but now the Rituximab is definately happening and 12 weeks worth! I'm a bit shocked as last time it was only 'if we need to' and now its definate. I's hoped I would be on my way back to work and 'life' within 6 weeks (if I've no more reactions) but that's not going to be happening now.

Going to be filled up with antihistamines to avoid the complications I had. So I'm a little comforted that we're trying to avoid my usual reaction, but I'm unsure about the Rituxamab. Whilst I have read all I can, has anyone out there had Rituxamab and can offer me some advice please?

Hey ho, its off to chemo we go! 3rd time lucky - we can finish treatment and get those hairies supressed.

Hope everyone is good, take care all

Wx 

Hello Wendy et al

Sorry to read that you are having a rough time with the little hairy monsters!!  Hang in there - no doubt they will be zapped soon.  I know Mark, who recently joined this group (ex LC forum friend) had Rituximab over a period of several months and seems to be fine now.  However, as everyone reminds us, each of us responds differently to treatment.  I just hope you respond well on this occasion! 

 I was diagnosed Christmas 2009, had Cladrabine mid January every day for 5 days and on day 7 was admitted and stayed there for 5 weeks.  Mind you, some of the problem was my allergy to other medication.  To cut a long story short, I've been in remission for one year now although my blood counts aren't great and my platelets somewhat on the low side.  The main thing is provided they remain stable its OK and the hairy monsters don't return too soon.

Wishing everyone who is having treatment the very best and hope you come out the otherside of it with confidence that the monsters have been eradicated!!

Take care one and all

Florence

HI there everyone, I'm Mark. Some may know me from the Leukaemia Care website. I found out I had HCL in April 2010, a few months off being 43. I was devastated I had cancer, as you would expect. I felt well, had no idea I had anything, just a swollen spleen. The hardest thing for me about HCL  is the treatment. All the treatments can make you ill or feel worse while having them, to varying degrees. As Florence says, I had Rituximab. It was my first treatment. I had it because I did not want chemotherapy, mainly because as my haemoglobin was only 8.1mg, I would have needed blood support at that level which l didn't want for several reasons. It worked a bit, counts rose but Rituximab works better, I'm told, as a second line treatment or in combination. I'm now having thrice weekly interferon injections which made me feel awful to start with but it's just like injecting water now. My counts are either normal or near normal. I hope I can pick my time to have chemo, perhaps in 2013. I have young kids and when I was ill in late 2010 they needed lots of looking after and with my wife is not that  confident a person, I just had to get on with it, even though I felt ill beyond belief.

My advice, to anyone newly diagnosed is to try interferon for a while. Getting your head round your diagnosis is enough to think about and you can ready yourself for the rough ride chemo is likely to give. Interferon is a gentler treatment than a chemo drug. My counts started rising (fast with Hb) almost straight away. You then have a breathing space to think. Interferon is not the best treatment in terms of lasting effects, that's chemo. Chemo seems so scary to me when I think about it. I had to ask my consultant to get interferon, it had never been mentioned until I asked to have it- wonder why. There's little time to talk at a consultation, so say it quick and say it straight!  

.Mark.          

Morning all!

Wendy - sorry to hear you're having such a time of it. It seems like one thing after another at the moment.  At least you have a plan to try and sort this out once and for all.  Fingers crossed!

Mark - hello, we haven't met before.  Sounds like you've been through the wringer as well.  I have to say I'm counting down to the chemo as I just want rid of these hairies asap!  My bloods show that my HCL has probably been hanging around since 2009, but it was only picked up in Feb this year, which is why I need treatment so soon after diagnosis.  I also don't feel ill, just tired all the time and bruising at the slightest thing. 

Unfortunately seems like Wendy was right about the bank holiday causing a delay.  The hospital couldn't get stuff sorted for this monday coming, so I asked about the 7th and they're checking if they will start or not, but it looks likely that it'll be 14th May before I start.  Bit of a downer as I was all pysched up to start on Monday.

Lady at the hospital doesn't seem to get what I need either as she muttered on about me needing to be treated as an in patient, until I pointed out I needed injections not a chemo IV.  Now she says it depends how long it takes them to mix the chemo and if they do it on friday can it still be used on monday?  Isn't Cladribine just in a bottle to be drawn out  with the needle?

My consultant has been off the past few days so I'm ging to call on Monday and try and find out what the delay is and check that the chemo ward do actually know what treatment I need.  I know HCL is rare, but surely there's a list of what to do???

On the up side, as treatment is delayed, I'm off to a wedding this afternoon.  Hope this rain stays off!

Have a good weekend folks and stay healthy :)

Hi Chrissy (burnc),

I believe cladribine has to be made up in solution and used within a few hours, it doesn't keep - that's the IV drip anyway, maybe the direct subcutaneous injection is different.

Although it can be worrying when it seems the hospital gets confused, the upside is that soon you'll be your own expert on HCL and your treatment.

I'm sure you've realised from recent posts that some folks get lucky and sail through the chemo, yet others have a rougher time. The treatment will work for you, so be reassured even if there are some hairy moments (pun fully intended, sorry!)

I believe it's quite common for the hairies to develop slowly, over a number of years - in a way you're lucky because it's been diagnosed so can be sorted out.  As it's a slow developing condition, there is usually no urgency in starting treatment, in my experience.

Finally, I don't know if Macmillan have a telephone helpline, but Leukaemia Care do, manned 24/7, and will be happy to answer any questions you have about life before, during and after chemo.

Enjoy this afternoon's wedding!!!