Pain in legs with Hairy Cell Leukemia

If he is on treatment this could be coming from his treatment so check this in with his team.

If he is not on treatment how mobile is he?..... is he doing some regular, but simple exercise as inactivity can cause this but again he should check this in with his team.

Hi Sarah, I know you posted a year ago but I wanted to ask a couple of questions.  Firstly how’s your father doing? I hope he is still managing HCL ok.  The second is his leg pains you mentioned.  I’m newly diagnosed and not yet started treatment but I have pains in my legs and arms. Generally achy plus pains that feel like my limbs are dragging me down. It very odd.  

Any help much appreciated.  Lisa 

Hi.  Yes Dad is doing ok , he’s had various treatment unfortunately non have put his HCL in remission, he was diagnosed 2018. Dads 86 , so we can never be sure if it’s his condition or old age !!!! He gets a lot of pain in his legs , The HCL makes his very tired , so his legs and arms feel like dead weights. Dad spleen is very enlarged , so eating can be a problem ,  Can I ask how old you are.?? When will you start treatment??

If you have any questions about treatments or the condition please ask as if I dont know I  will ask Dad, he would be more than happy to help.  

sarah   

Thank you so much Sarah. You’re the very first person I’ve spoken with that’s even heard of HCL and it feels good to talk. I am 391147happy your dad is still doing ok.

 
I’m 55 and was very poorly with Covid and was hospitalised. It was strange because I appeared fit and healthy. They discovered very low platelets whilst treating me and then the bone marrow biopsy confirmed HCL. All a bit of a shock. 

I’m just about classed as symptomatic. The painful limbs, fatigue plus bruising and bleeding. My diagnosis was only a week ago and I’m seeing a specialist nurse this week, a dermatologist next week regarding some associates lesions on my hand then I’m back to my haematologist for new bloods. He will see me every 4 weeks until it’s the optimum time for the treatment, 

How soon did your dad have his treatment? Thanks again for getting back to me  it means so much x

Hi.  Dad started treatment straight after diagnosis, as his spleen was enlarged.  He had cladribine , which he tolerated well but then got an infection which lead to sepsis.  

Dad bruises very easily and gets a lot of rashes.  He won’t be having any more treatment as he’s not strong enough.  My advise is take each day as it comes . 
haematologist are excellent , as the condition is rare they all want to get involved  

Anymore information, please don’t hesitate to ask .

Take care   Sarah   

Thank you Sarah. Sending my best wishes to your dad.