I'm looking for CLL patients who are on ofatumumab and what their reactions have been.

[judithpetersen]

[Cllcanada Top Poster CURE Hero]

This ofatumumab is first line? Is this the only treatment currently used?

Was your husband previously treated?

Is he a clinical trial?

What country are you in...?

Sorry for the questions but it will help others who respond...

[judithpetersen in reply to Cllcanada]

We are in the USA. Not a clinical trial. Previously treated with benamustine, rituxan, pcr, and ibrutinib.

[norahmaria]

Hi judithpetersen,

I live in the UK

I have was on the ofatumumab trial in 2012 alongside CHOP (Anna Schuh trial and one of the first of only 35 patients recruited to the trial )

I finished the chemo (CHOP ) in january 2013 and continued with the ofatumumab until November 2013.

I was diagnosed with CLL in 2005, had FC plus 2 rituximab in 2009. After 3 years in remission I developed Richters Transformation in 2012 when I was put on the trial. My endpoint ct scan in january showed 'no sign' of the RT and my blood work is within 'normal range'.

In terms of side effects, I didnt really have any and tolerated the drug very well having all infusions pretty much on schedule. The only things I have noticed is cramps in my legs at night which I didnt have before treatment, tho this may not be related . Been having a few sweats of late so had another CT scan last week, will see my consultant for the results tomorrow.

Very best wishes

[judithpetersen in reply to norahmaria]

Thanks so much for that. Wow, you have really had a plate full of issues. My husband has been on several treatments in the last two years. He is 75 years old. His problems with ofatumamab may be that he is so weakened by the other treatments that no matter what he takes, it gives him some problems. He just had his 4th infusion of ofatumamab and this one went fairly well. I do appreciate your taking the time to fill me in on your experiences. Best of luck!

[isambard]

Ofatumumab was literally a life saver for me. I had been in hospital for 2 months with a severe chest infection which resisted all the drugs I was given. My consultant wanted to start me on Ofatumumab but wanted the chest infection to clear up first . Eventually things got so bad ( my daughter was told I only had a few days left to live) I was given the Ofatumumab. The result was amazing. Almost immediately my neutrophils which had been zero for months came up to almost normal and the chest infection improved dramatically. I carried on with Ofatimumab , as an outpatient, for several months. The only drawback is that Ofatimumab does not act on the lymph nodes. Mine became very large and are now being treated with Ibrutinib ( see my other post on this).

[judithpetersen in reply to isambard]

Thanks so much. We're into the 6th week on this drug and think that the numbers are improving. He's also been on Ibrutinib, but only for about 3 months. Not sure that was long enough. Best wishes to you!

[diandgord]

My husband is presently in a trial study with ofatumumab and Imbruvica. He had was twice relapsed from chemo (really no remission). This is a 6 month trial and he is part way through. He will continue on Imbruvica when done. To us this has been a "miracle" for us. He also has infusion of IVIG every month for the past 2 years. We live in South Carolina so this treatment was available for us. Hoping Imbruvica comes to Canada soon. My husband and I are both from Canada and have family in Ontario and go "home" to visit often.