Hairy cell leukemia

[Canicatti01]

Anyone out there?

[Canicatti01]

My husband has hairy cell leukemia. I feel he is going backwards instead of getting better..his breathing is affected as he suffers from asthma. He was better after bring hospitalized a week but now I feel he is having same problem..anyone have positives for this type of Leukemia please?

[TishH in reply to Canicatti01]

Sorry to hear that your husband is feeling poorly after treatment for HCL.

I was diagnosed in 2009, and had a lot of different infections in the following months after being treated with Cladribine, some serious. In 2011 I needed chemo again, this time with Pentostatin. Since then I've had no problems, but still have 6 monthly check-ups with Haematology.

There are a few of us on here, so hope you find the help you need. All the best to you both.

Tish

[Canicatti01 in reply to TishH]

Ahh thank you..seems a long journey..I'm glad you haven't had any problems since second treatment..We just need to keep.strong xx harder some days than others x

[2003UK]

Hi, I am out here with a leukaemia, but I just wanted to say I hope someone will be able to help you.

However I probably share similar fears, thoughts and feelings.

Look after yourself

[Jespere]

Hi, after a recent CLL diagnosis, my hematologist ordered more bloodwork and the flow cytometry came back as hairy cell. He knows nothing about HCL so he's referred me to another specialist. I have NO physical symptoms so I hope that means watchful waiting for a while. I hope your husband finds some relief - I can only offer support and prayers. Take care!

[Canicatti01 in reply to Jespere]

Thank you so much Jespere wish you all the best too

[LineofDuty]

Hi, I myself was diagnosed with HCL in 2006 had a reaction to pentostatin so had cladribine.. relapsed in 2013 had 5 day of injection in the tummy of cladribine. Since then go every 6 month for blood check up. Everything fine, though counts that fight infection a litle on the low-side.

[Canicatti01 in reply to LineofDuty]

That's very reassuring to hear that after 5 infections in the tummy you are better.Thafs what my husband had and his neutrophils are .1 maybe it just takes time and then he will be in remission like you.its nice to hear that I shall tell him.thank you .his white cells are still low

[LineofDuty]

Hi, try 'leukaemia care' website, they have a webinar all about HCL, there's all so mainly people from America called 'robs user friendly', I myself haven't contacted them, read the comments, some good information out there.

[Canicatti01 in reply to LineofDuty]

Thanks so much Line of Duty x will have a look x