Trial Experiences: Pamela

16th October 2020 Trials

Trial experiences

When were you diagnosed ?

My original diagnosis was in July 2012 after a routine mammogram. I had both ductal and lobular cancer and had 2 WLE , chemotherapy and radiotherapy.

My secondary diagnosis was in July 2019 after my annual mammogram picked up a small tumour in my breast. CT and MRI then also showed progression to spine L4

What is the trial?

I am taking part in the ROLo trial, (no chocolate involved!) The full title is' Phase 11 study of ROS1 targeting with crizotonib in advance E Cadherin negative, ER positive lobular breast cancer’. I take Crizotonib twice daily and Fulvestrant monthly.

How did it come about ?

After a scan in February showed further progression in my spine L3 after SABR treatment, my medication was stopped and I had another three sessions of SABR. My next 3 monthly scan showed that even though the SABR treatment to my spine had been successful, I now had two liver metastases. My oncologist ( who up until now had not been particularly proactive) then advised that I could potentially be suitable for 2 clinical trials operating out of the Royal Marsden, London. ROLo or Bylieve, acceptance on either of these trials would be dependant on having the appropriate mutation for the targeted treatments. I decided on the ROLo trial as it was quite likely that my lobular cancer would be E Cad negative. Apparently 90% of lobular cancers are E Cad negative. I have also since discovered that lobular cancer respond less well to chemotherapy.

Had you heard about it in advance, did you research it or was it mentioned to you?

Funnily enough my sister (a retired GP) had looked into trials in February and the ROLo trial was one she had mentioned. I have to say I didn’t really look into it that much, I think I was so overwhelmed and knew I couldn’t start a treatment until after the SABR.

How is it going?

I would say it is going OK, not great but good. The scan after 8 weeks showed that things were stable. What this actually meant was that of the two lesions, one had stayed the same and the other had grown by from 1.3 cm to 1.8 cm, a total growth between the two of less than 20%. So I can continue with the trial. I have had to travel to London weekly for blood tests, and also whatever medication was required. I have felt very well looked after, it has been easy to contact the Breast Care Research team. I have to report to them any side effects and also note down the times I have taken the tablets and when different side effects occurred. I have had a few of the more common side effects but none that really effect my day to day life.

What treatment were you on before this?

After my original diagnosis, I was on Tamoxifen. This was changed to Palbociclib and Letrozole after my secondary diagnosis.

Do you know of anyone else on trials?

I don’t personally know anyone else on a trial. I have seen posts on some of the secondary cancer social media pages of other people on clinical trials.

What are your thoughts on the importance of trials and research?

Trials and research are so vitally important, yes obviously I hope they help me, but going forward it is imperative that more treatment lines are discovered and a cure would be great. I was so shocked to see how old the drugs are that are currently subscribed. Capecitibine was approved in 1998, two of the components of the FEC Chemotherapy have been around since the 1950’s, Gemcitabine 1995 - the list is long. New drugs are coming through like Palbociclib and others “clibs” .the “ sibs” like Alpelisib and Taselisib. Trials on many of these drugs show that there is a delay in progression, which clearly is a step in the right direction , but we need more research to find a drug that will stop us dying.