Is there anyone out there who has been on the Arctic trial to treat their CLL

[ruthpen]

I finished 6 months of treatment 10 weeks ago and have been more unwell post treatment than before. My back is very painful and I was in hospital for 3 days recieving a blood transfusion (4 units) 3 weeks ago. My blood levels are dropping again now. I'm wondering what else I can expect?!

[HAIRBEAR_UK Founder Admin]

Hi ruthpen sorry to read of your reaction and discomfort. Have you a key worker or specialist nurse that you can contact by phone to discuss things with? I am not treated or a medic so can offer little experience other than to ask if you have discussed this with your medic. I'm sure someone will be in touch having received notice of your post in this mornings journal.

[ruthpen in reply to HAIRBEAR_UK]

Yes, I am in contact with health professionals, but am keen to learn of other's responses to their treatment. Apparently the Arctic trial has recently been discontinued due to the high level of toxicity, so am keen to hear how others have done following treatment.

[HAIRBEAR_UK Founder Admin]

Yes I hope others are able to give you some feed back of their experiences and how they are doing

I was aware the trial was due to finish at the end of this year, which of the trial arms were you treated in?

Reading the CLL Support association trials report written in the summer, I see that it was due to close and a different drug combination is proposed to be trialled alongside FCR providing a potentially less toxic alternative. But this new drug is highly experimental and it is very early days.(not sure how they are getting on with this?)

"It is proposed that both ADMIRE and ARCTIC will be replaced in 2013 with the CLL10 - Adaptive design

Phase II/III Ibrutinib-R vs FCR trial".

This report can be reached from link to see Trial Brief for CLLSA July 2012 at:

cllsupport.org.uk/news_libr...

[David39]

Hi Ruthpen, I'm on the ADMIRE (FRC+M) trial rather than ARCTIC (FCminiR+M) so I can't speak specifically to the after effects you're now having. In the event I was in the trial control group that got the standard FCR rather than FCR plus the additional mitoxantrone. What about you? Did you have standard FCR or the FC and mini rituximab plus mitoxantrone?

The effects of treatment can vary from one person to another, I know, and it sounds as though your blood counts have taken a fair battering. Positive though, that you were able to complete the full six cycles and this will give you the best chance of a positive result. Personally my counts have just about returned to normal two years after treatment, though they weren't hit as hard as yours. I'm sure yours will slowly recover too, and for the duration you may well be at additional risk of infection so do take sensible precautions. There were certainly occasions during the first year post treatment that I too felt worse than beforehand, but two years on, I feel great - so hang on in there. Do keep in touch.

[ruthpen]

Thanks for your reply David. I had the FC and mini rituximab plus mitoxantrone. I was hoping I would be back on track in 6 months. 2years sounds a long time to me, but I guess I'll have to learn to be patient. It's good to hear you are feeling so well now.

[Bisto CLLSA]

Hi Ruthpen,

I am on the Arctic trial and have just completed the fourth cycle of the FCR arm. My specialist nurse has told me that all of the other trial patients on the other arm (FC reduced arm plus M) have been transferred to FCR because of the increased side effects reported in the trials. However I have spoken to a couple of people who have transferred and they have said they were fine on the treatment.

I would certainly be asking why the treatment you received has now been discontinued and would want some reassurance that the problems you are experiencing are being dealt with effectively and appropriately.

Good luck.

[ruthpen in reply to Bisto]

Apart from the weeks of treatment I felt fine until my 5th treatment. I nearly didn't go back for the 6th but in the end thought I'd better, if only for the sake of being of use to the trial. The people you know who have now transferred are the lucky ones I should say!

[Sharastani]

I was on the FCR arm in the very early days of the ARCTIC trial. I have now been in remission for 4 years. Whilst it seems a shame that the trial was ended early and other drugs are replacing the 'M' with newer drugs hopefully means treatment options are moving forward more quickly than if they were to wait until one trial ends before another is started.

Best wishes