i am starting Fulvestrant along side a trail drug on Friday. I am terrified. Tamoxifen and Arimadex did not work
for me so now I have liver mets and a small tumour in my spine.
is anyone else on this trail ?
??
Hello Louis,
Sorry, I’m not on your trial but I did start on one called MANTA on 31.7.15. It’s a combo of Fulvestrant and AZD2014 (also a trial drug from Astra Zeneca). AZD2014 is an mTOR inhibitor. Prior to the trial, I was on Letrozole only for just 3 mos. and it didn’t work… so I know how you feel.
It’s early days yet, but the AZD2014 seems to be working. It’s quite strong and I had to have my dose reduced from 2x50mg/day to 2x35mg/day because of bad stomatitis (mouth ulcers). Oh, forgot to say that I’ve still got my big primary tumour and several liver mets (biggest about 2.5cm).
Did you ask to go on the trial or were you offered a place? Are you in London? Try hard not to worry, as this may be a good combo for you. Please let me know how you get on, as it’s always good to compare notes and get support from other trial people.
Best wishes,
Julia x
I haven’t posted for a few weeks now, just wanted a break but had my scan results today! I have to bid a sad goodbye to Capecitabine after nearly 2 1/2 years, it’s been a kind and effective chemo for me but my hilar lymph node is now back where I started, in size but no further spread.
I am starting Fulvestrant next week so would be interested to know what it’s like, Louis?
We talked about a new trial called PIPA which combines the new Palbociclib that FF is on with 2 types of PK inhibitor??. In phase 2 they will add Fulvestrant. Hopefully I’ll be on the trial at that stage. It’s running at The Marsden and Christie, I think.
Just thought that it might be of interest. Wishing ((((hugs)))) to everyone with appointments.
Thank you Debra, that’s good to know. Wishing you best of luck with the trial drug,let us know how you get on x
Hi Julia. I have been finding things quite tough recently. Spent all day in bed today with iPad.
I called the Trail Drug Nurse and discussed the SE’s with her. A lot going on at the moment for me. My partner not coping very well. He is the emotional support I need. My Councellor is away until the new year. I start with a new one at The Christie soon. The stress of my next scan on the 30th Nov, and the worry about how long I am going to live.
So sorry to rant Julia. Please forgive me.
I am going to try and be more positive this weekend. Get dressed and put on some make up. Sometimes it is hard to cope.
I hope and pray the Fulvestrant will stop any more activity. ??xx
Hallo Julia, I had my 3rd set of injections on Tuesday, the nurse was very skilled and I hardly felt them, no pain or swelling afterwards. I have a scan and clinic appointment in the New Year so will see if they are working… I haven’t joined the PIPA trial yet, they are still in phase 1 which is testing Palbociclib with 2 types of P13K inhibitors, looking at MTDs I think. Phase 2 adds Fulvestrant. I’m not sure of the time scales but I’ll take my lovely Oncs advice. I am seen at Royal Marsden in Sutton. There is some info about the trial if you google PIPA, I found it quite brain taxing!! xx
I have had my scan today at The Christie. Very stressed out about the results next week. This is the worst time isn’t it ? On Sunday I experienced some bleeding, like a period. Called my Trail Nurse. She did not seem concerned.
i am on my part time now for 10 days. Going to London to stay with my relatives to take my mind off next week.
Dear Julia and StillHere I hope you are ok ? I think about you often and you are always in my thoughts.
Debra.
xx
Hallo Debra, I so know how you are feeling, waiting for scan results is the worst. My tummy does hula hoops all day long. If you can, try to see results as a good thing, doctors can tailor the next treatment to them, you are being well looked after etc etc. I hope you have a lovely time with your relatives, I’m sure that they will be a great distraction.
Yes, fulvestrant has also given me something like a period, to cap it all, it was on my 60th birthday!! Cancer is a gift that keeps on giving! I have had to turn into a Tena lady, so romantic…
I’ll be thinking of you this week and everyone else in a scary place xx
Hallo to all the “full of fulvestrant” ladies, I just wanted to wish you and everyone on the forum a VERY happy Christmas! Lets try to forget scan results until next year. It sounds further away like that.
ive just had my fourth injections, they hurt this time but apart from that and some nausea, I’ve had no horrid side effects - except being a Tena lady ( too much detail!!)
its ***s law that I’m not convinced its working so I’m preparing for possible progression in my January meeting.Stable is good, I think I’d be happy with that. It is an easy treatment so I’d like to stay on it. Xx
Hallo Debra, good to hear from you, I’ve just come online, not posting much at the moment as I’m on Fulvestrant for the next few months after a stable Mabel scan result.
Im useless at remembering everyone’s cancer history! Sometimes I wish it came automatically with a post, some American websites have this and I find it helpful. Anyway, have you had IV chemo at all? I know everyone is different but I found Xeloda a very easy type of chemo, no hair loss and you can take breaks.
Don’t feel terrified, the SEs are quite manageable and it was very effective for me, I got 21/2 years from it. Thinking of you xx
Hi, there are so many Newbies on the forum now, it’s lovely! Well, I mean that in the best way, of course we all would rather not be!
I haven’t posted much recently but I have had a scan last week and result today, Fulvestrant is no longer working for me ? I’ve been on it 7 months. I have been asked to go on the PIPA trial which uses 2 types of PK inhibitors, with Palbociclib (Ibrance) that FF is on in U.S. “Waves to Funny Face…hallo!”
I haven’t got my head round it yet, but as luck would have it, we timed our trip to India this Friday so we are off for a break ? ?
i will try and find out more about the trial when we get back if anyone is interested. Hugs to everyone on the forum, you are all amazing xxx
Hiya stillhere.
It’s good to read there is a trial for ibrance as it seems to be the up and coming treatment for us 80% that don’t have the right cancer for herceptin. I think I’m right in thinking that you don’t get the hair loss either. I sometimes dip into inspire website and there are a lot of threads there regarding ibrance and side effects etc.
Hi is ibrance for all types of b.c…does anyone know…thanks sharon❤
Hi still here.iv been to goa twice I loved it…amazing food…have lovely time…sharon…x
Thank you, Sharon, getting excited now!
I think Ibrance is for ER+, HER- breast cancer but I could be wrong, that’s what it’s being trialled for here though. Once I have met the trial team I’ll find out more. In US I think it’s given in combo with a hormone therapy like Letrozole but PIPA trial is using it with 2 types of P13K inhibitors so they are all targeted therapies.
Do I sound like I know what I’m talking about? ? Not really…but I try to keep up, weirdly makes me feel less frightened to read the science. Take care everyone xx
I shall be reading this thread with interest as ibrance is hopefully the next line of defence for us non herceptin ladies.
Hugs xx