ofatumumab (Arzerra)

Root Forum :: UK Chronic Lymphocytic Leukaemia Forum :: ofatumumab (Arzerra)
Topic by kestrel on Mar 29, 2014 05:41am

Hi.Heather great to hear you are doing so well on the Ofatumumbab,and almost at the end of treatment.Cheryl my sister contacted you on my behalf as I had been very ill over the last month or so, with a chest infection and very heavy cold and steroid treatment for my hugely enlarged lymph glands.I've spent 3,weeks or so in hospital.
I started my Ofatumumab treatment on the 21st of March and the second was yesterday.I have been very lucky.I slept mostly through both infusions,and for the first time in months my lymph glands have massively reduced,and I have energy and an appetite back.The only minor side effect is the fact I don"t sleep to well the night after the treatment.Hence why I'm writing this at 5.30. in the morning having been awake for hours,but who care's I'm truly grateful for the treatment,and it's nice to have some normality back in my life.I hope like you the rest of the treatment works well.If you wish I shall keep you informed of my progress and you likewise.Regards Lee

Reply by Heather on Mar 30, 2014 10:11pm

Hi Lee. So good to hear that you are feeling better. I don't sleep very well the night after treatment and wonder if its the shot of steroids before treatment that causes this. But as you say, 'who cares'. I would love to hear how you get on with the rest of your treatment and shall keep you informed about mine. Regards Heather

Reply by kestrel on Apr 01, 2014 12:14pm

Hi,Heather thank you for your reply.I'll keep you informed,but if I may ask you a question.Have your lymph nodes/glands reduced totally or partially,and any advice on things to watch out for ??As your getting towards your final treatment have you been told an idea of what remission you might expect?I've not been told to much,but also it's to early to see if its working for a longer period than just the beginning results.Speak soon .Regards Lee

Reply by Heather on Apr 01, 2014 02:45pm

Hi Lee, No my lymph nodes haven't reduced very much but my blood is looking good. I asked my consultant about 'living' with enlarged glands and he said that with cll you sometimes have to accept that they won't completely go down and not worry about them if you are otherwise well. I haven't asked about length of remission because I've had cll for a long time (13 years)and had a lot of treatment so tend to take each day as it comes, having said that my consultant is very positive and as this treatment has been so easy compared with some others I've had in the past this almost feels like remission now. Hope all that is helpful and I look forward to hearing from you soon. Regards Heather