Re: What next? Ofatumumab, Carol

[Guest guest]

Carol - thank you for that very interesting info - lots of people are saying that it's too soon to put your faith in ofatumumab (said it recently) - yours is the first report I have seen that speaks positively of ofatumumab single therapy. What is your dosing?

In a message dated 8/13/2010 2:51:06 P.M. Eastern Daylight Time, heartsong11@... writes:

Hi , I wasn't ready to post my ongoing results with ofatumumabyet, but wanted to just throw in a little good news after reading yourpost and question.I've been on steroids, cytoxan, IVIG, RCD, one cycle of PCR thatmessed things up (all of which I've talked about before) all to try tostop the inexorable and critical AIHA. Well, now I'm on ofatumumaband it's surprisingly doing very nicely for me. I never had aninfusion reaction, I do get very tired from it, but once it's down toonce a month it should be easier. But the good news is that my spleenhas already come down from 12cm to 6cm and nothing was budging thatone for ages. AND my hg is up from 10 and at the low point of theyear 8.5 to 12.3 and staying there which it hasn't done since I was onthe intolerable steroids. My wbc are 6.5 and hover there and myplatelets are around 120. My neuts are normal. I almost look curedon the counts, but still carry lots of fatigue around but that wasalways the hallmark of my CLL.Anyway, just this brief excursion into a so-far good journey withofatumumab. Now the thing is of course we don't know if it will holdup once off of it, or if so, for how long. But I'm just glad to beout of critical trouble with the AIHA and have my counts almost normalfor the first time in 11 years.I'm sure Dr. Furman will give you very good advice, . Sorry it'srearing its head again, and hope it can be struck down again for agood long time! Best to you, Carol

[Guest guest]

Hi ,

I am happy you are doing good. Can you tell me what AIHA stands for?

Thanks,

Joan

From: jb50192@...

Sent: Friday, August 13, 2010 6:37 PM

Subject: Re: What next? Ofatumumab, Carol

Carol - thank you for that very interesting info - lots of people are saying that it's too soon to put your faith in ofatumumab (said it recently) - yours is the first report I have seen that speaks positively of ofatumumab single therapy. What is your dosing?

In a message dated 8/13/2010 2:51:06 P.M. Eastern Daylight Time, heartsong11@... writes:

Hi , I wasn't ready to post my ongoing results with ofatumumabyet, but wanted to just throw in a little good news after reading yourpost and question.I've been on steroids, cytoxan, IVIG, RCD, one cycle of PCR thatmessed things up (all of which I've talked about before) all to try tostop the inexorable and critical AIHA. Well, now I'm on ofatumumaband it's surprisingly doing very nicely for me. I never had aninfusion reaction, I do get very tired from it, but once it's down toonce a month it should be easier. But the good news is that my spleenhas already come down from 12cm to 6cm and nothing was budging thatone for ages. AND my hg is up from 10 and at the low point of theyear 8.5 to 12.3 and staying there which it hasn't done since I was onthe intolerable steroids. My wbc are 6.5 and hover there and myplatelets are around 120. My neuts are normal. I almost look curedon the counts, but still carry lots of fatigue around but that wasalways the hallmark of my CLL.Anyway, just this brief excursion into a so-far good journey withofatumumab. Now the thing is of course we don't know if it will holdup once off of it, or if so, for how long. But I'm just glad to beout of critical trouble with the AIHA and have my counts almost normalfor the first time in 11 years.I'm sure Dr. Furman will give you very good advice, . Sorry it'srearing its head again, and hope it can be struck down again for agood long time! Best to you, Carol