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Anyone experience of clinical trials

9 REPLIES 9
Member

Re: Anyone experience of clinical trials

Hi all, 

I am on the plasmaMatch trial at Addenbrooks hospital, in my 3rd session. I got BC over 2 years ago, did surgery, chemo and radio at full blast (nearly killed me twice!).  A tumour in my chest area broke through and inflammatory BC developed across my mesectamy scar.  It is the most painfull thing and I am on painkillers all day/night. 

My trial Dr said my last scan showed cancer was stable with no spread, but my right breast does now have a lump in it which is growing daily and the pain has upped a couple of gears.

I have asked to be referred back to an oncologist (recently moved and was cut off from my original hospital - Stevenage Hertfordshire WORST Hospital ever!) as I would like to see if there is any other options for me. I feel my trial team are mainly there to see what their drug is doing, not how I am doing.. 

Am very scared and cant seem to find anyone else on this trial with experience of side/effects or advise. 

Kind regards

Maria

Member

Re: Anyone experience of clinical trials

I’ve just consented to the plasma match trial and had bloods sent for testing, looking around for other trials as my TNBC has turned chemo resistant, so a medical breakthrough is required
Member

Re: Anyone experience of clinical trials

Never venture never gain. You may not get any side effects and if they are unbearable you can stop. I just feel this trial may help your cancer and also could help other ladies. Says me that falls apart when I get a scan. I think I’d go for it. If you are beating yourself up about it don’t do it. You have to go into the Trial with a positive attitude. 😘
Member

Re: Anyone experience of clinical trials

Well I’m finally getting started on a clinical trial tomorrow. I didn’t qualify for Plasma Match trial....I did have a mutated gene but not one they have a targeted treatment for. Anyway I was accepted on the other trial which is looking at effectiveness of giving fulvestrant along with trial drug. I’m a keen to get started but nervous too.
Member

Re: Anyone experience of clinical trials

Hi Harebell, Im sorry you didn’t get the anticipated results from the Fulvestrant, hopefully the new treatment will be more effective. Although 2 weeks on 1 off will be very tiring for you. It is the high dose Fulvestrant that they’ve mentioned putting me on, but I haven’t heard anything back yet & im not on any treatment until I do...quite scary really!!!

what really gets me about this whole thing is that what works for one doesn’t necessarily work for the next person & then you could be on a treatment for a while, doing fine & then for no apparent reason it stops working. You’re constantly living on a knife edge, trying to stay one step ahead!!!

I’ll keep you posted about how I get on. Hopefully I’ll hear something soon. Enjoy your treatment free week when it comes & get plenty rest.
Member

Re: Anyone experience of clinical trials

Hi Jeannie

I have been on the plasmamatch trial for about 5 months. Unfortunately recent scans show that lesions in the liver have increased though lesions elsewhere had not progressed which was good news. I have now come off that trial this month. I have been put on weekly chemotherapy (taxol) three weeks on and one week off. I started last week and have had two doses - third one on Wednesday 27th. I am looking forward to the week off for a recovery space. I hope it will go well for you. Do let me know how things go.

All best wishes

Member

Re: Anyone experience of clinical trials

Hi Harebell, thank you so much for replying. This week has been a bit of a rollercoaster ride. I’ve had so much information to take in & process. I managed to speak to my own oncologist on Tuesday who explained all about the trials better & was able to answer most of my questions. I then met with the trial doctor Thursday who answered the rest of them. Anyway long story short, i was actually eligible for 2 trials & I’ve consented to go on the Plasma Match trial first, which if I’m suitable offers the same targeted therapy you are receiving. If not, then I will then go forward for the other trial. My bloods were taken on Thursday, so it’s just at a waiting game now. However my head is in a better place & I think I’ve more to gain from going on trial than not.
Are you still on the higher dose fulvestrant? How effective did you find it if you don’t mind me asking, jx
Member

Re: Anyone experience of clinical trials

I have just been on a plasma match trial with faslodex at double the normal dose i.e. 1000mg every fortnight - targetting specific cell mutations. I had very few side effects and those i had were very tolerable. I do not know about the experimental drug you mention but i am sure your consultant would not put you at risk if they did not think you might benefit. Do not be afraid to ask awkward questions. They were very patient with me in responding to all my questions and fears.
Community Manager

Re: Anyone experience of clinical trials

Hi Jeanie

 

Sorry that you havent received a response yet, I am sure someone will be along soon to support you.  In the meantime, we have a private group on the Forum for women with secondary breast cancer, maybe you would like to consider joining?  

 

In the meantime, I hope you have found information you are looking for, maybe talking with one of our specialists on the Helpline, 0808 800 6000?

 

Best wishes
Anna
Digital Community Officer

Member

Anyone experience of clinical trials

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!!!!!!!