Hairy cell leukaemia

[frankmok]

Hi. My name is Frank and I've just joined this forum. I was diagnosed with HCL and successfully treated with cladribine back in 2003, since when I have pretty much been fine and on no medication at all.

However, since June I have been having monthly blood tests and visits to my haematologist. It now looks very likely that I will have a course of cladribine chemo in the next month or so. My key blood counts have declined, and I have experienced a couple of infections recently - night sweats, weight loss, fatigue etc.

Has anyone had the subcutaneous injection form of cladribine recently? if so, I'd be interested in hearing how it went for you. Also, I'm quite happy discussing my experiences of living with HCL with anyone, for example anyone recently diagnosed who may be worried about what the future may bring.

[LCNurse]

Frank

Thank you for joining our forum. I hope you get some answers to your questions from other patients who have experience with Subcut cladribine.

please contact our care line if you need any further support. 08088010444

[mikefergus]

Frank: same year of diagnosis. I had a relapse in 2011, and had subcutaneous injections of cladribine. Once I got over the thought of stomach injections by being told they were subcutaneous, all was fine: and same as line infusion before: no side effects. All goes well now. You will 'walk it': no problem.

Mikefergus

[frankmok in reply to mikefergus]

Thanks Mike, glad it all went well for you. The jab certainly seems simpler than the 4 hours drips I had back in 2003, so fingers crossed, like you say, I'll sail through it.

[frankmok]

Surprisingly, despite mixed blood results when I saw my consultant a fortnight ago fully expecting chemo to start... I'm still on watch and wait... next appointment in mid February.... funnily enough I feel fine now, my missing energy has returned, so we'll see how it goes....

Been tied up the last week or so having quite a lot of the house redecorated... not DIY, ha, I'd end up with more paint on me than on the walls.

Regards, Frank

[mikefergus in reply to frankmok]

Frank, Seems all is under control. I am glad your bloods were OK last time: so were mine. All the best. Mike

[frankmok]

Hi Mike,

Glad you're also doing ok - my next test is mid July, a lot more reassuring with a few months since last appt, after nine months of blood tests every month and 'will they/ won't they give me chemo'. Even back doing regular cycling recently.

Cheers, Frank

[mikefergus in reply to frankmok]

All the best. Mike

[Dustina8]

Hi. Just seen your post. I was diagnosed Dec 2015 and treated January 2016 with subcutaneous Cladribine injection. Have been in clinical remission since. How are you now?

[Aster_ in reply to Dustina8]

Thanks so much for the reply. I’m so pleased to hear you have been in remission since 2017. I’m doing ok thank you. I also had subcutaneous Cladribine injections as treatment back in April 2023 which reduced the level of HCL from 70% down to 20% which I think still counts as clinical remission, but was told best case scenario would have been 5%. I was given the choice of more Cladribine straight away or watch and wait with 6 weekly blood tests, which have been pretty stable the last few months. Still getting aches and pains in my Spleen now and then, as it was really enlarged at 24cm, it’s much smaller now at 14cm. How often do you have blood tests now? Also do you know what percentage of HCL you were left with after your treatment. Completely understand if you would prefer not to share this. Thank you for reaching out.

[Dustina8 in reply to Aster_]

I was told I initially had 96 % haries. I didn't then have a second Bone Marrow biopsy as bloods bounced back really quickly... despite being in hospital 3 weeks very poorly. My consultant didn't think it was needed but would have bloods taken every 6 months to ensure things were ok. Last April my consultant said I can now go yearly. He would have said I didn't need to see anyone anymore but he likes to talking to me 😂 Now on yearly appointments . Only issue I have is anaemia. I was never told if my Spleen had enlarged. I was very nieve and focused on just getting through the treatment. I still get aches. Have to take extra care of teeth . Which hospital do you attend?

[Aster_ in reply to Dustina8]

Sorry to hear that you were unwell after the treatment, but really reassuring that you are now on yearly blood tests, I am hoing to get to that point. I don't think that is naive to just focus on the treatment, whatever helps you get through it and sometimes easier not to think about the bigger picture and just to concentrate on the present and what you need to gte through. Were you told if it was likely that you would need more treatment in a number of years? Is it in your sides that you get aches, mineis still in the area of my Spleen. I'm in the UK, where are you based?

[Dustina8 in reply to Aster_]

Hi. I was told that hopefully I wouldn't need anymore treatment unless I felt unwell amd bloods dropped dramatically again. So 🤞. I'm also in the UK. There are quite a few of us now but some hospitals are better equipped and knowledgeable than others

[frankmok]

Hi Dustina and also hi Aster,

I hope you are both feeling well on the way to recovery even with some bumps in the road, I guess we all get those to some degree.

Not much to report at my end - I've not seen my consultant for 2 years, but have 6 monthly blood tests and as long as they're ok, all I get now are telephone consultations.

I've never had a percentage figure put on my hairies - and I don't really want a bone marrow biopsy having had about 5 over the 20 years since I was first diagnosed.

We can be reassured that cladribine treatment does work so well - and I believe it's unusual in chemotherapy for the same drug to be equally effective if and when you need a second course if you relapse, so that's a bonus. Also the current subcutaneous jab is much easier than when it was administered on a drip that took hours.

Best wishes, Frank.