In the next month or so, my husband will start treatment for hairy cell leukaemia. The final team meeting is still to take place, but the locum consultant haematology said to expect 6 cycles of 28 days. Each cycle starting with 5 days of injections of Cladribine. What’s your experience of being on Cladribine? I am wondering if it really varies as wildly as we are led to believe?
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Hi @SunFlower,
One of our brill Blood Cancer UK nurses, Gemma, answered a similar question about cladribine in another, older thread here and I think it might be useful for you.
She covers what to expect around infection risk and how neutropenic sepsis is managed - in short, your husband’s team will give you both clear guidance, but it typically means taking his temperature at home if he feels unwell, and calling the team straight away if it’s over 37.5°C so they can review him quickly.
you might also find it useful to look at Cancer Research UK’s information on cladribine as a drug and at our own Blood Cancer UK page on treatment for hairy cell leukaemia as well.
You’re right that the question about how much the experience varies is the kind of thing the community here can speak to so much better than simple information pages can, and I hope some members with direct experience of hairy cell leukaemia and cladribine will be along soon to share their perspectives.
Our Support Line is there for both of you if you’d like to talk anything through, and is staffed by our nurses: 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Keep posting whenever you need to,
Ceri - Blood Cancer UK Support Services
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@Ceri_BloodCancerUK thank you for your reply. Husband saw consultant today. He said bloods are good enough for watch and wait and 1 cycle of Cladribine when the time comes. Whilst today’s appointment was so much more positive than last week’s - it leaves so many questions ! So in addition to how Cladribine made others feel, I wonder if they could also share how many cycles they had please.
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Hi @Dave21, @dmquinlan, @NickB, and @Fermented, I hope you don’t mind me tagging you here.
I know you’ve all got your own lived experiences of hairy cell leukaemia, and I wondered whether you might be happy to share a little of your experience with @SunFlower?
Absolutely no pressure at all - but any input you’re able to offer would be so appreciated.
Thank you 
Ceri - Blood Cancer UK Support Services
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Hi Sunflower,
I hope you and your husband are well and that he’s come to terms with his diagnosis. When I was diagnosed in late September 2024 with Hairy cell leukaemia ('HCL'), my blood counts were pretty much baseline so I started my treatment straightaway. I was initially told that I’d just have a course of Cladribine during a week long admission - daily injections for a week - however, when in hospital they suggested that I combine it with 8 weekly sessions of Rituximab intravenously. For me, I didn’t have any side effects from the Cladribine other than a slight temporary chest rash. The first session of Rituximab was a little tough but my body adapted quickly to that and the other sessions were fine. During the treatment because of my low immune system, I did very little other than stay home and go for walks because I wanted to avoid picking up any infections and after a few sessions of treatment my counts started increasing and I started to feel much better. Obviously everyone’s experience may differ but it would be my advice during treatment to stay positive, eat and drink well, do some walking, and isolate as much as possible. I hope your husband has the same relatively easy response to treatment that I had and that everything goes well.
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Hi @SunFlower
Sorry to read your story, you’ve come to the right place for some information on others experience.
Similar to @Dave21 - I was baseline when diagnosed, my chemo started 2 weeks after results of my biopsy were in. It was scheduled to be 5 days of Cladribine, 2 injections, with other medication to protect liver / kidneys, sickness meds and daily antiviral & antibiotic (which I took for many months after chemo).
On day 4 my temps were high, so couldn’t administer, so was admitted for 1 week while treated for various infections. The treatment is systemic, in other words, gets the good guys as well as the bad guys! so infections are easily picked up. I also needed 6 units of blood.
I resumed the 2 remaining days of chemo after my infections had cleared, was discharged from hospital after that. I was back in again however after about 10 days with high temperatures again, another 7 day stay or so.
I didn’t experience side effects from the chemo drug (Cladribine) but did get infections as mentioned.
This is common when treated for this variant.
I would suggest avoiding public places, mask up / sanitise (remember lockdowns! very much like that). There is good information on other aspects such as diet and what foods to eat (avoiding raw foods, eat fresh cooked etc… here on the bloodcancer site).
it was a few months before I had enough energy to resume exercise beyond short walks, but was back running, cycling & yoga etc after 6 months.
My follow up treatment was blood tests weekly for a few months, then monthly, extending eventually to annual. I don’t want add to your worries, but my Hairy cell leukaemia ('HCL') did relapse on my 5 year annual test, this is common. I was treated differently second time, thankfully this was after the covid periods so didn’t have that in the mix also.
Hope this helps, take care.
David
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@dmquinlan thank you for sharing your experience. What do you mean by baseline ? Another poster also mentioned this ?
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Just that the blood counts were very very low and well below the normal range for reds, whites, and platelets.
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@SunFlower as said, when blood counts are low, neutrophils lower than 2.0 - which is the indicator I was informed was key. Mine were zero, and probably were for some time prior to diagnosis. I had an enlarged spleen too.
Within a few days of cladribine, the spleen was back to normal size and the neutrophils started to rise, but not enough to fight infections. Over time, they did.
Think of neutrophils as the “First Responders” or the “Frontline Infantry” of your immune system. They are the most common type of white blood cell and are usually the very first to arrive at the scene of an injury or infection.
Neutrophils have one primary mission: Search and Destroy. When bacteria or fungi enter your body (like through a papercut or a lung infection), these cells rush to the site, swallow the invaders, and release chemicals to kill them.
| Level | What it usually means |
|---|---|
| High Count (Neutrophilia) | Your body is currently fighting something. It’s like the “alarm” has been pulled, and the bone marrow is pumping out extra troops to handle an infection, stress, or inflammation. |
| Normal Count | Your defenses are steady. You have enough “soldiers” on patrol to handle everyday germs. |
| Low Count (Neutropenia) | Your “army” is thin. This makes you much more vulnerable to infections because there aren’t enough responders to stop a germ before it spreads. |
(with the help of AI search.. 
)
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Hello @Dave21 and @dmquinlan
I just wanted to say a quick ‘thank you’ for responding to that tag - I’m always keen to call on the experience of other Forum members as there’s such a wealth of knowledge here
Ceri
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@dmquinlan thanks for sharing !
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Hi @SunFlower
Thank you for your posts.
Usually, Cladribine is given for one cycle only. As previously discussed, this is given over a course of 5 days. The blood counts normally take some time to recover following this treatment therefore your husband will also be prescribed extra, supportive medications such as anti-virals and prophylactic antibiotics. He will need to continue these medications for a few months after his treatment. He will also have regular blood tests to monitor his blood counts. Normally a bone marrow biopsy is arranged to monitor response 4–6 months after the Cladribine treatment.
If it would be helpful to discuss this in more detail, please do not hesitant to contact our nursing support line on 0808 2080 888.
Kind regards
Fiona (support service nurse)
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@Fiona_BloodCancerUK thank you for the info. It has been so confusing to receive such different information from the same heamatology appartment (2 different consultants) just one week apart.
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