RIAltO: I am about to take part in a Randomised Investigation of Alternative Ofatumumab: designed to compare ofatumumab with chlorambucil.

[johnpollard37]

I'd like to compare notes with other people experiencing this investigation which is based in Liverpool; and especially with anyone who has already experienced this treatment. I am 77 years old but this is my first serious illness and always been in good health. No idea really what to expect during the treatment, or how effective it will probably be.

[Cllcanada Top Poster CURE Hero]

I believe the trial is comparing ofatumumab and chlorambucil (OChl) with ofatumumab and bendamustine (OB)

public.ukcrn.org.uk/search/...

[johnpollard37]

Very many thanks for referring me to this site, which leads to an invaluable explanation in plain English. I'd still very much like to hear from people who have personal experience of this treatment.

[Explorer1 in reply to johnpollard37]

Hi John,

I was on the Resonate trial in Cardiff. Ofatumumab v Ibrutinib. I was in the Ofatumumab arm.

The first day was the worst, as like many people I had a reaction to it - about 3hours in. They stopped it for a couple of hours before starting it up again. It took a long time but no more problems.

The rest of the infusions went without any hitches. No problematic side effects other than two short eye infections and one episode of neutropenia.

After the full term I had a few months without treatment. By Dec. I was having problems and was then given Ibrutinib which I'm pleased to say is working well for me.

Wishing you all the best.

[jimh]

I have just been on the Cosmic trial lead by Leeds hospital and delivered at the Freeman in Newcastle. I am 76yrs of age. I was set to have 6 treatments. After three I had to stop, I developed AIHA. This was Ofatumumab CHlorambucil and Flouradabin. I was admitted to hospital for blood transfusions after 27 pints along with medication it began to stabalise. I have not needed any further transfusions but my blood levels are still being monitored. Still on quite a lot of medication. Hope it goes better for you, I was lead to believe that it may have been the flouradabin that caused the problem for me.

[UKfulloflife]

Hi

I finished my treatment on the Rialto at the end of November (at the Churchill in Oxford) - I'm 63. The protocol calls for between 3 and 6 cycles of treatment (I was on the Bendamustine strand). The first cycle consisted of Ofatumumab (reduced dose to see how you react) on Day 1 followed by Bendamustine, and then just Bendamustine on Day 2 + a full dose of Ofatumumab on Day 8. Subsequent cycles were simply days 1 and 2 (full doses). You are given quite a few premeds to help combat nausea, allergic reactions etc. Day 1 is a very long day as it takes over 5 hours for the Ofatumumab infusion to go through and you then have to have the Bendamustine, which isn't as long - about 30 mins if all goes well and the pump doesn't throw a wobbly! With regards to how it affected me.... it's important to stress that it would appear that I am atypical, and hardly anyone has had the same problems as me! Chemo made me very tired for the first few days of each cycle wanting to sleep all the time, but I think this is fairly normal. All went well actually during treatment, but cycle 1: I came out in a rash when I got home. This was followed by a high temperature and D&V. You have 'your own' research nurse and numbers to contact in certain circumstances eg temp over 37.5C etc. I was admitted, given IV antibiotics and fluids and allowed home 48 hrs later with oral antibiotics and loads of different anti-emetics. Cycle 2 - same scenario but much worse, including a chest infection and kidneys deciding they didn't like what was being done to them! Admitted again, more IV ABs, in for 7 days this time. Cycle 3 my dose of Bendamustine was reduced by 25% to try to counteract the side effects I was experiencing, and I had no major problems other than a temp spike which subsided and they decided I didn't need to be admitted. Cycle 4 - I came out in blood/fluid filled blisters but I felt fine! Ended up having skin biopsies and swabs and Dermatology deciding that it was a reaction to the Bendamustine and that I should not have any more. We did a bit of sleuthing ourselves and discovered on the manufacturers website that this reaction has been reported before but so rarely that they can't give 'likelihood of occurence'. My consultant concurred with the dermatology team and as I'd already had more than the minimum cycles everyone was happy for me to stop treatment. The results have been amazing. I had a Lymphacite count of 203 at the start of treatment and it is now 0.6. My haemoglobin and platelets, which had both dropped considerably, are now back in normal range. There is no sign of CLL in my blood and there is no discernible CLL in my bone marrow. Prior to treatment I got very tired very quickly and had little energy. Now, I feel fantastic - in fact I returned this morning from a Caribbean cruise, something I couldn't have even contemplated 9 months ago.

Of course, it's essential to bear in mind that everyone is different and reacts differently to treatment. I can say though that according to the team in Oxford, they are getting very good results overall with this trial. I am absolutely thrilled with the outcome and would happily recommend others to take part in the trial if it is offered. You will only be offered a place on the trial if they think it will benefit you anyway, and you are then pre-screened to make sure that you will be receptive to the drugs.

I hope that helps a bit - do feel free to message me if I can answer any other questions you may have.

[johnpollard37]

Very many thanks for the personal account of your experience. V. sorry some of it was so terrible; v. delighted that the end result is so wonderful, and that you are restored to full life.