I have been asked to take part in a trial drug for secondary breast cancer that has mestasied to my liver. On a recent scan overall the liver was much better, with some gone and some shruk, but I have a old lesion and one new one has appeared. I had 18 weeks chemo beginning of 2013 and have been on letrozole ever since, with no side effects. My consultant has now asked if I would take part in a trial called MANTA which will be a course of Fulvestrant in combiniation with the Dual mTOR inhibtor AZD2014 or Everolimus or Fulvestant Alone in Estrogen Receptor-Positive Advanced or Mestastatic Breast Cancer.
Has anyone else taking part in trials and if so what were your results and are you glad you took part?
Just need some reassurance that I am doing the right thing. I have now received the literature and the side effects are hideous, so really don’t know what to do
I would say give it a go. If you don’t like it you can stop at any point. Trials are needed to find the drugs that work as well as not. It’s an absolute must there are women here who would love to have the opportunity. Your team will always have your health as their priority. Ethel x
i would also say what have you got to lose by taking the trial,
i was offered a trial 2 years ago for my bone mets,
the trial nurses are very caring with you every step of the way,always there if you need them
and nothing to much trouble.
They used to call me in between hospital visits to make sure i was ok.
i used to get scanned every 12 weeks that inc MRI,CT & bone scan, some ladies wouldnt like that
but i felt it was a sort of securirty blanket.
my trial kept me stable for 2 years and only earlier this year did i get progression,
so i had to leave the trial.
They have to tell you about possible side effects but it doesnt mean you will get them all,
also the trial nurses told me that i could at any time stop the trial, so you wont have to carry on with it if you dont want to.
good luck with whatever treatment you choose
kimi x
Hi Kimmy I took part in atrial this year ,it was taking exemestane and another drug unfortunately it didn’t work for me,but having said that if I hadn’t been on the trial then maybe the mets I had to my liver would not have been picked up so soon.You are scanned more regularly on atrial and I found the trial nurses to be excellent.I would say give it a go as you have nothing to lose.
Kaye x
Hi, I’ve recently been offered a place on the MANTA trial which Kimmy1 mentioned below. Just wondering if anyone out there is on or has been on the trial? I’m a bit worried by the potential side effects but the idea of having a treatment which I wouldn’t get otherwise is appealing.
Best wishes,
Tournesol
Hi Cress,
I didn’t have to ask on this occasion although I have asked about trials in the past after searching online. The lead hospital on this one is Queen Mary, although I am at another hospital. Would prefer not to share the name online but can PM you if you like.
Tournesol
Good luck Julia! I’m actually still on the trial for now as the liver lesion was found to be benign in the end. Current side effects are rashes and swollen ankles but it’s liveable with and may go away on its own apparently (which has happened to some other side effects already).
I have been reading about MANTA trial and might ask about it at my next appointment, to see if I might be suitable, so I am interested in any feedback from you lovely ladies. Do you know which drugs you have been assigned? x
Thank you for your replies, I didn’t realise that you had to change hospitals…mmmmm… I don’t want to leave the Marsden, I have so much confidence in them! I’ll read up a bit more, but thank you again xx
I am starting on a new trail next week - maybe if i meet the criteria called FINESSE the drug is similar to avastin in that it stops the blood flow to the cancer that feeds it. main se seems to be hypertension. does anyone know anything qbout it? or is currentyl on it? would love to hear if you are. it seems to be most effective in patients with a mutation called something or another - can’t remember anyway there are testing my liver biopsy to see if i have that mutation. will know next week
Hi Julia,
Sorry to hear about the ulcers - that’s one of the side effects I haven’t had (yet). I hope they will let you continue on a lower dose. I’m thinking they might try that with me too, as I’ve had a skin reaction for a couple of months now and it’s getting worse on the whole. But first need to check if it’s still working - will find out next week.
Springsummer , I hope you get a place on the Finesse trial. I don’t know much about it but it’s good to have new options.
Tournesol
Hi Julia,
Hope the reduced dose is going well so far. I don’t think the trial dose would necessarily be the optimal dose in a phase 2 trial as they are still looking at what people can tolerate (I think). I know that when I saw a different consultant when mine was away she looked surprised that I was still on the starting dose. My skin is getting worse again so I will be discussing this again at this month’s appointment I think.
Best wishes,
Tournesol
Hi all,
back on here after a few years away as i am about to start Manta trial tomorrow. I wonder if anyone has had long term success on it? Am a bit nervous about the potential se’s as i am getting married in september and could do without being covered in a rash! ( i know, vanity,vanity, but hey, a girl can hope!) . Has anyone sailed through with no problems?
Herbi x
Cress, i too would like to know what trials you are looking at at the Marsden. I have just been there and was told there is nothing suitable for me. x