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Visit the HCL Mailbag to submit a question to be answered by an expert in Hairy Cell Leukemia, or to read other questions that have been answered by an HCL expert. Your question(s) will be answered as soon as possible via email, and could be used to be part of the next HCL Mailbag!
Recovery period
I was treated with Cladrabine for 5 consecutive days early Jan 2010 2 weeks after diagnosis of HCL. I am due to have my last treatment of Pantamadine next week (total of 4) and remain on Aciclovir for another 3 months. My energy levels remain low and would like to know if anyone else has had a similar experience. My consultant advises that every patient responds very differently for treatment of HCL and I feel somewhat alone in that there is no organisation set up or anyone else to talk to about their recovery before remission was confirmed.
Recovery
Thank you for your response - much appreciated. I've connected with HCL Forum on the Leukaemia Care Website and we communicate regularly. Thank you for the alternative web sites you so kindly provided - I'll have a look at any not previously checked out. May I suggest you also look at the Leukaemia Care site - you will see all the different forums as well as one for HCL. I'll be visiting our local Maggie Centre early next week for a chat and support. Take care and keep positive! Florence
Hi Florence, I saw your post
Hi Florence,
I saw your post and didn't want it to go unanswered. I am a month ahead of you in treatment and am still not fully recovered. My Blood counts have sufficiently returned in numbers, but are not functioning correctly as I still continue to have daily infections and petecial bruising amongst other issues. Regarding energy levels, though not ideal I am grateful for the improvement. It took a very long time for me to obtain a diagnosis which left me in a very poor state of health for an extended period of time. So looking back at the way I was, balances my view on how I feel today. I think you have to take each day as it comes and learn to pace yourself. Regarding the feeling of isolation there are several discussion boards and blogs out there -
http://community.lls.org/community/bloodcancer/livingwith/hairycellleukemia
http://community.macmillan.org.uk/groups/leukaemia/forum/t/11087.aspx?Pa...
http://www.network54.com/Forum/263810/
http://www.facebook.com/group.php?v=wall&gid=60969105314
http://hairycell.blogspot.com/
http://www.youtube.com/watch?v=8Yd3uTVcVUY
http://myhclexperience.blogspot.com/
http://jonshclblog.blogspot.com/
http://hcljournal.blogspot.com/