Hi Everyone
I have an incurable local recurrance(profile lists all the details) and was wondering if any of you triple negs out there were currently going though a trial or looking at starting on one, or just know of any that are running. I have asked my team to look into them for me, but not getting anywhere it feels like, so would love to be able to ask the right questions of them.
Also could be useful info to have on a thread for everyone in our situation.
Many thanks for any info.
Nikki
Hi Nikki, I’m triple neg and am on a clinical trial for skin mets on the chest wall which was diagnosed only 6 weeks after chemo/mx/25 rads. I’m taking a combination of Capecitabine and Sunitinib. Please feel free to PM me if you’d like more information. LizaRad x
There are some PARP inhibitor Phase 1 trials running now or being anticipated at the Marsden which may be suitable.
Jane
hi jantharra,
I’m on the react trial 2nd time with triple-neg bc, but so far no secondries.
Reneex
Hi Nikki, Im just starting on the chemo road. Epi-cmf but im also on the beatrice trial for 12 months.This is amied at triple negs with secondaries. Although i have none. The drug is known as avistan. Im sure lots of the ladies have heard of it.Not sure if this is any help to you but take care and keep strong.
Tina xxx
I am triple neg too, was diagnosed in June 2008.
I am also on the REACT trial, to which I actually reacted very badly too. I can off the trial for a few weeks, but things are going ok for now, so back on it.
Anyone else had problems with this trial?
Hi Everyone, thank you all for your replies.
I just don’t seem to be getting anywhere with getting information on what’s available, so I can make my own choices in this. It’s so frustrating, but the trial info you have given me will help me to get them to answer my questions.
Thank you all.
Nikki
Hi Everyone. First time here. Looking for anyone who has tried
Eribulin. I’m going to meet my onc on Monday re: a trial. I can’t seem to find anyone who has given it a try. Not sure I want to go that route yet either.
I wish you all well. Keep smiling and fighting this awful disease!
Barbara, I have been on Eribulin (clinical trial fase III) for three cycles but unfortunately it did not work for me. it does not give massive side effects, my hair grew back, usual nausea, mucositis, diarrea etc but not massive. I have met women that had been on it for 1 year and it was working, but I don’t think they were triple negative.
I have been also on a phase I trial with BEZ325 (Novartris) an inhibitor of PI3K and TOR, it stabilised the metastasis for 4 months.
take care
xxxsab
Hi Nikki
I saw a doctor at The Royal Marsden in Surrey on Wednesday and i have ben offered a trial. Its a phase 1 trial and as long as my fitness and tests are ok i should be starting it in early June, im having Rads at the mo so my body will need a break before i start the trial.
I had a referal from my GP to Prof. Smith (Oncolodist)for a second opinion at the Marsden in London. It was then i was refered to the Surrey hospital to be put forward for a trial.
Have tou considered asking your GP to refere you to The Royal Marsden? As its a cancer specialists hospital they may have the right trials going for you to take part in…
Good luck
Shell
xx
Hi Shell
Sorry for reply delay, am away at the moment. Is that the PARP inhibitor trial? I have asked my onc for information on suitable trials but am still waiting for details.
May I ask how many chemo’s you have had so far?
Best wishes
Nikki
hi im looking info from anyone who has been offered a trial for triple neg bc , the trial is phase 3 , given along side chemo and radiotherapy and then a futher 6 months every three weeks , the drug is bevacizumab , can anyone advise. im seeing my onc 2 marra 2 decide what 2 do , im so confused .jules
Hi Jules66
I have put for you below the link to BCC’s publication regarding clinical trials which you may find useful.
breastcancercare.org.uk/upload/pdf/Clinical_trials_ERJ.pdf
Kind regards,
Jo, Facilitator