Offered a drug trial as the next step

Hi - I was diagnosed with Secondary breast cancer 15 months ago - I had never been diagnosed with a primary - the breast cancer had spread to liver, bones & lung before I had any symptoms.
I had a course of chemo immediately (Taxoterre and Carboplatin)3 weekly doses over 6 cycles. I have also been having Herceptin & Zoledronate.

The above treatment has kept the cancer stable until now. My most recent CT scan results show that I now have enlarged lymph glands, which apparently means I either have new cancer developing or the caner I already had is growing again.

My Oncologist has recommended I take part in a trial which is to evaluate the effectiveness & safety of T-DM1 vs. Capecitabine plus Lapatinib.

The study will involve me being randomly selected to take one of the above drugs for the course of the study - I don’t really understand how this works - if the study is to compare 2 drugs - how does my oncologist know which is best for me and which one I’ll get? He doesn’t, so how does he know it’s the best course of action? Or is this just a last ditch attempt?

Feeling very scared and unsure - I have an appointment on Tuesday & I need to have decided by then whether I want to take part. Can anyone share any experiences or thoughts?

Thank you x

Hi Nikki123
Sorry I can’t help with this but I thought I’d bump this thread up to see if anyone else can. Good luck with your appointment on Tuesday - hopefully you can get some good answers from your onc.
Nicky

Hi Nikki

Here’s the BCC publication about clinical trials which may be helpful for you to read:

breastcancercare.org.uk/upload/pdf/Clinical_trials_ERJ.pdf

Please also feel free to call our helpline to talk your concerns through on 0808 800 6000, the line is open weekdays 9-5 and Sat 9-2.

Take care
Lucy

Nikki, I too have secondaries to pleura, liver and bones. I recently took part in a clinical trial-through choice. I did this as I’m BRCA2 and the PARP inhibitor trials are now at phase 2 and are being targetted for genetic cancers, so I felt this could be a useful weapon for me (as indeed it was, as I had stability for 8 months). However, I emphasise 2 things-

  1. It was my idea, choice and decision.

2)It had to be done at that point as the protocol stipulated that I had to have tried less than 3 chemos before being accepted onto the trial.(I had already had taxotere and capecitabine)

It sounds as if it may be quite early for you to be going down the trial route? I don’t think it is necessarily a last ditch option-as I found out with my trial. But it’s not something that I would enter into lghtly. Incidentally, I had alraedy tried capeciatbine+lapatanib and had no results whatsoever, which we found devastating-although I had had a good response to taxotere and herceptin. Everyone is so different, and what works well for one may be less effective for others.

In the first instance I would suggestyou ask your onc what the entrance criteria to this trial are, and if you have any other chemo options you can try before committing yourself. There are certainly many chemos around, and I’m uncertain as to why he feels this would be the most beneficial route for you at the moment?

On the plus side-if you do decide to go ahead with the trial, you will be very rigorously monitored-and when progression starts up again, will be transferred, if possible to another treatment. This in itself is comforting.However, your onc can’t tell/evaluate which will be the best of the trial drugs for you-that’s why they’re at trial stage! In my case (phase 2), the main purpose of the study was to evaluate the most effective dose-I have no idea what stage your trial is at, but I’d be asking a lot of questions before proceeding, as it sounds as if there may be other options for you. The only logical reason I can think why he is offering this to you at present, is to meet entrance criteria-perhaps it’s limited to those who have only had 1 chemo?

If you wnat to chat further, please don’t hesitate to pm me-and good luck with your decision.