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Ofatumumab (Arzerra, Humax)

Topic Made On: Jun 27, 2010 10:17am
Admin

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Guidance published by National Institute for Health and Clinical Excellence (NICE)

Ofatumumab (Arzerra, Humax) is not recommended for the treatment of chronic lymphocytic leukaemia that is refractory to fludarabine and alemtuzumab.

The Committee concluded that ofatumumab for the treatment of chronic lymphocytic leukaemia that is refractory to fludarabine and alemtuzumab is not recommended as a cost-effective use of NHS resources. This decision was taken because the ICER for ofatumumab was above £81,500 per QALY gained when more plausible assumptions were used in the economic modelling than in the manufacturer’s base case analysis.




Replied On: Oct 14, 2013 02:36pm
Heather

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I'm about to embark on a course of Ofatumumab treatment and wondered if anyone else had tried it and if so how they got on.



Replied On: Oct 16, 2013 03:35pm
lchanney

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I've just done 8 weeks of weekly infusions of Ofatumumab, and for me it's a very gentle drug. It just kept the CLL at bay but did not give the remission desired, so I've now been taken off it - with my agreement - and put on Bendamustine at half strength (I had a bad experience with FCR last year).
Bendamustine looks good so far - chronic fatigue but significan shrinkage of the lymph nodes as well. Only one infusion of that so far, so watch this space, and Best Wishes Heather.



Replied On: Oct 17, 2013 10:14am
Bubbles55

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Best wishes Heather and Ichanney.

I hope treatment goes well and is successful for you both.

Bubbles55



Replied On: Oct 17, 2013 01:13pm
Heather

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First of all thank you both for your good wishes.
My treatment will start next week with 5 days of high doses of methylprednisolone which will hopefully get my white count down a bit and then I start the Ofatumumab on the 8th November.
I had Bendamustine last year together with Rituximab and it made me very fatigued but did get a little better as time went on. Unfortunately the remission didn't last very long, but I have had CLL for a long time (12 years) and had a lot of treatment. I am hopeful that the Ofatumumab will give me enough respite for a few good holidays at least!
I will try and keep you informed of my progress, and meanwhile my best wishes to you both.



Replied On: Oct 18, 2013 08:04am
kestrel

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Hi Heather my name is Lee I wish you well for the 5 days of treatment,but please be aware that the team that are monitoring you through this procedure are constantly checking you blood sugar levels whilst using methylprednisolone.I speak from personal experience I've ended up on Insulin because my team did not monitor me to well.This has caused me all sorts of problems.I don't wish to scare you but make you aware.Regards Lee



Replied On: Oct 20, 2013 10:15pm
Heather

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Hi Lee,
Thanks for the heads up but I am sure I will be very well looked after as I have an excellent team looking after me.
Will let you know how I get on this week. Regards Heather



Replied On: Oct 31, 2013 01:04pm
Heather

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Hi Lee,
Five days of methylprednisolone went very well, in fact I felt so well and full of energy that it was the best week I've had for a long time. I am now having a week off before starting Ofatumumab next week but have not felt very good because of steroid withdrawal symptoms but seem to be getting a little better each day. Busy week next week as I am having a picc line put in on Tuesday and then start treatment of Friday. All the best to you and I will post how I get on. Regards Heather



Replied On: Dec 09, 2013 04:48pm
Heather

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Have now had five doses of ofatumumab and am feeling well. I reacted quite badly to the first dose and less so to the second. The last three have been fine. I have had no side effects between treatments apart from a slight headache directly after treatment. My white count had come down from 390 to 3. I have three more weekly treatments to go and then monthly ones for four months. Am now looking forward to Christmas and would like to wish all of you a very Happy Christmas. Regards Heather.



Replied On: Dec 10, 2013 10:18am
Bubbles55

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That's really good news Heather. Have a wonderful Christmas and and even better New Year

Bubs



Replied On: Jan 16, 2014 03:07pm
cybermate

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Hi Heather, im so pleased that this treatment seems to be helping you and hope it is still doing so! Heather could you tell me what the initial reaction was to the first few doses please? And how you are feeling now?
Kind Regards
Cheryl



Replied On: Jan 30, 2014 04:01pm
Heather

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Hi Cheryl, Sorry I've been a while getting back to you. At the moment I am feeling very well. I have completed my 8 weekly doses of ofatumumab and am now on the next stage, which is once a month for 4 months. I had the first monthly dose on Monday so just three to go. I won't lie to you and say that it was plain sailing from the start because it wasn't. I reacted quite badly to the first dose, with a high temp. shakes and vomiting - in fact they had to stop the infusion and there was some doubt as to if I would carry on with it. However my consultant persuaded me to give it another go and the only reaction to the second dose was a rash which disappeared after some antihistamines. Since then I have been fine, no reaction worth worrying about at all. Just a headache and difficulty sleeping the night after treatment. If you are having this treatment or considering it for the future, good luck and stick with it because it does get easier as time goes on. I'd love to know how you get on so keep us posted.
Regards Heather



Replied On: Mar 20, 2014 05:59pm
cybermate

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Hi Heather, Im posting this on behalf of my brother Lee who I believe has messaged you in the past! Heather Lee is about to start this treatment tomorrow and pray it helps him as he has been very ill lately! He would like to know how you are getting on now as from the last post you were doing really well and really hope you are continuing to do so! any information or advice would be much appreciated.
Kind Regards
Cheryl



Replied On: Mar 27, 2014 02:35pm
Heather

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Hi Cheryl, Sorry for the delay, but thought that you would like to know that I am still well with near normal 'bloods'. I had my 11th dose this week so have only one to go now. I do hope that Lee is ok and that the first treatment wasn't too awful. If it was please encourage him to stick with it as it does get better and the results seem worthwhile. Please give him my very best wishes and do let me know how he gets on as there is no one else on this treatment at my unit and its lovely to hear how someone else is getting on with it.



Replied On: May 27, 2014 11:15am
Heather

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Just a quick update. My last dose of Ofatumumab was five weeks ago and I am feeling very well. My picc line has been removed and I am looking forward to going to France on holiday in a couple of weeks time. Good luck to anyone else on this treatment. Regards Heather



Replied On: Jul 21, 2014 03:26pm
Heather

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After a very good three months following my last ofatumumab my white count is on the rise again, and is currently 221. This week I feel very privileged to have started treatment with ibrutinib. I will try and post how I get on. Regards Heather



Replied On: Jul 22, 2014 07:43am
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Heather

I would be interested to know about the Ibrutinib trail that you are on i.e is there a trail name, where are you receiving the treatment, some of the points about the treatment that your center has told you, etc.

Many thanks

Robert



Replied On: Jul 22, 2014 04:08pm
kestrel

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I too have been on Ofatumumab for the last 4,months.and I like Heather have seen my white blood count rising.I have today seen my consultant who discussed Ibrutinib some time ago,and I am truly grateful to tell that I have also been allocated Ibrutinib and start the drug on Friday.I will endeavour to keep you informed of my hopeful progress.Regards Lee



Replied On: Jul 26, 2014 11:21am
Heather

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Robert,
I am not on an ibrutinib trial as such, but on a named patient supply. This is apparently available until the end of September if you meet the right criteria. I am very lucky that I have a wonderful consultant (Worthing Hospital) who applied for and got the treatment for me. I have been taking the ibrutinib for a week now and after a few mild side effects over the first few days, I am pleased to report that I feel very well. If there is anything else I can help with please feel free to ask.
Regards Heather



Replied On: Oct 12, 2014 08:01pm
millymay

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Hi, I am about to start on a trial called Rialto at New Cross Hospital Wolverhampton. This is a combination of Ofatumumab and chlorambucil. Has any one else on here had this. I was diagnosed nearly ten years ago and have been on watch and wait until now. I have no obvious symptoms apart from blood results. I am told this is a'gentle treatment'.



Replied On: Oct 15, 2014 08:35am
Robert

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Millymay

Whilst not the same, I completed Rituxan and chlorambucil several years ago. Rituxan and Ofatumumab are very similar in how they work and any side effects. Overall I achieved 18 months remission with the combination, and Chlorambucil was very easy to take with minimal side effects.

Robert



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