My husband T went in to see heamatology this morning expecting to sign consent for 1 round cladribine (1 injection daily for 5 days, followed by 23 days ‘rest’) , was told he would need 6 rounds. He asked why it keeps changing - consultant no 1 said 6 months earlier in the year, then consultant 2 & 3 said 1, and now we’re back to 6? Just as we got our heads round things tonight, we got a call to say it had changed back to 1 round/month! How long did your treatment last ? Especially keen to hear from others who have hairy cell leukemia.
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Hi @SunFlower
Must be frustrating for both you and your husband.
Everyone has different treatments depending on diagnosis.
I suspect speaking with the @BloodCancerUK-SupportTeam might be best source of guidance or your Clinical Nurse Specialist if you have one.
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Hi @SunFlower, I’m sorry the plan has changed again, I remember you talking about this sort of thing earlier this year. It mmust be incredibly frustrating.
I remember that there were some helpful replies from members with hairy cell leukaemia on your earlier cladribine thread, so it might be worth asking there about how long treatment lasted, as you could tag the kind community members who already have responded?
I can’t offer any insight into why it keeps changing (only your husband’s team can explain that, and it’s fine to ask them to go through it with you both before he signs anything). If he has a clinical nurse specialist, they’re often a good person to ask. You could also ask for the final plan in writing, so there’s something to check back against?
If it helps to have some background before you speak to them, there’s more about how cladribine is given on our hairy cell leukaemia treatment page.
If you’d like to talk the plan through with one of our nurses, or work out what to ask the team, the Support Line is on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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