Hi there
I’ve been on capecitabine for the past 2 1/2 years for liver & bone mets & has been stable until last week. I’ve just found out that I now have further lesions in liver & possibly skull (I’m waiting on head ct to confirm that). My oncologist was going to change treatment to faslodex, but on talking he mentioned I might be eligible for some clinical trials that are ongoing just now. I’ve received info about a trial using Faslodex + experimental drug GSK525762 but it’s only a phase 1-2, so very early experimental stages. It also lists a whole load of side effects which are very daunting. I don’t know what to do. I’m going on Thursday to speak to them & I’ve got apt with my own oncologist today as well. I’m just looking for as much info as possible before I make my decision. I’m otherwise healthy & lead an active life. I want something that is going to help me not make me ill. I don’t know what to do!!!
Sorry just realised I’ve posted this twice. Head all over the place & not sleeping!!
Hi Jeannie, yes I’ve been on a trial for 20 months now so I’ll try to help. I could rabbit on for hours but in a nutshell…I haven’t heard of your trial but the questions I’d ask are:- is it a dose escalation phase…when small groups of patients are given escalating doses, measuring response and side effects. If so, what level are they at now ( sometimes the dose at the start can be too low to be effective) If it is at a dose expansion phase is there a placebo group? How often are scans done? I wouldn’t want to be in a placebo group for long, unfortunately you don’t know…except by maybe having side effects if you are in the drug group.
Id also ask what the criteria are for going on the trial…sometimes quite stringent and what they are for the trial to be deemed unsuccessful for you. You are allowed to leave any time you want, by the way!
i have been very well monitored throughout my trial and it has been very successful. If I get a 20% increase in my monitored tumour size then the team would take a view as to carrying on.So far I’ve had slow but consistent decreases. I get checked over at least once a fortnight, I’d also look at number of hospital visits and impact on your life. Sorry, must run! Ask any more questions x
Hi there Stillhere, Thanks for your reply & advice. I met with my own oncologist & the trial doctor this week armed with a load of questions. There are 2 trials that I am eligible for & following the advice of everyone concerned I’ve consented for a Plasma Match trial first looking for a mutation in cancer dna, which if found can then be treated with a targeted therapy. If I’m not found suitable for that then I’m going forward for the other one I initially spoke about. That one is a dose escalation study but it has already started so I’m not going in at very beginning. They say it seems to be well tolerated & no major side effects have been reported at present. I just got bloods taken on Thursday so it’s a waiting game at present. Hopefully after Christmas things will start moving, meantime I’m trying to put it to back of head & enjoy the festive period with my family. Jx
Hi Jeannie,
I am just about to start Fulvestrant injections as part of the plasmamatch trial. I was found to have a mutation on my ESRA1 gene which means that although my cancer is made to grow by estrogen it no longer responsive to antihormonal drugs such as anastrazole and letrazole.
It has taken a long time to get to this stage as you need to have a blood test which is sent of to the USA and then a bone scan, a ct scan and a biopsy of your tumour. In my case in my liver. I hope to start my injections this week of next. My last chemo finished in the last week of October but I’ve been told my liver tmour hasn’t gotten much worse during this time.
Good luck
Waffles x