Question about trials: Hi ladies, I wondered if... - My Ovacome

My Ovacome

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Question about trials

Lollie2016 profile image
Lollie2016

Hi ladies, I wondered if you may be able to help with my question..

I have a friend that is around 65 yrs old with ovca. She had radical surgery followed by carboplatin chemotherapy, which she completed 5-6 months ago. Now, 3 tumours have arisen in her abdomen. She has been told that surgery won't be possible. She has High grade Serous . She is BRACA negative. She has been given a couple of options for trials to take part in.

We are keen to understand what trials are available as options, so I thought it would be useful to come to this forum once again. I told her I find out for her, so if you would not mind sharing the name of any trials you taken part in , or any details related to any benefits you have felt from being on these trials, that would be very helpful.

Thank you so, so much xx

17 Replies

Hi Lollie2016Cancer Research UK has a searchable database for trials which might be helpful.

I am sure others who have been on trials will offer more information too xx

Lollie2016 profile image
Lollie2016 in reply to Lyndy

Hi Lyndy , thank you that is very helpful - I will take a look. xx

Hi Lollie . As Lyndy says Cancer research UK has a list of ongoing trials but your friend should ask her onc for the names of the trials they considering as in order to participate she will need to meet certain criteria and be able to find out more before considering participation. Sometimes you can be considered for a new trial as I was but unfortunately I was unable to participate as the trial wasnt opening in time so I was offered a different ongoing trial. To date I have participated in 3 trials since 2007. I wouldnt hesitate to take part in any trial, you are closely monitored throughout. Most are double blind trials which means that you are randomly selected by a computer for either the drug or a placebo. I wish your friend well. Kathy xx

Lollie2016 profile image
Lollie2016 in reply to Katmal-UK

Hi Kathy, thank you. I will let my friend know. May I ask which trials you participated in and did it help with your health? Thank you...(no worries if you dont feel comfortable sharing) Lollie xx

Katmal-UK profile image
Katmal-UK in reply to Lollie2016

Hi, I trialled Avastin 2007/2008. Cediranib in 20012/13 and started Olaparib in Jan 2014. That trial ended in June but I continue to take Olaparib. I have worked full time throughout, I was OC 3B BRAC positive and originally told I had a couple of years.

Lollie2016 profile image
Lollie2016 in reply to Katmal-UK

Thanks for sharing Kathy. This is very helpful to know. I’m glad the Olaparib has helped and you are well. X

Hi,

I would echo the advice of the other 2 ladies. My mum had caleyx after her first reoccurance (brca neg and same regime as your friend first time round) then was offered a trial for 2nd reoccurance. She has taken part in 2 trials and is now back on a traditional regime of carbo/Gem as trial options were more limited.

What I am trying to say is please reassure your friend there are lots of options.

Lollie2016 profile image
Lollie2016 in reply to MissEd

Thank you Miss Ed. Appreciate it and will look into these options. Hoping my friend can get onto a trial too. Wishing your mum all the best with her treatment X

Hello Lollie 2016,

Agree with all the other advice here, so can only add try ringing the Ovacome Support Team on 0800 008 7054 and looking at their website information:-

ovacome.org.uk/clinical-tri...

Warm wishes for a good day. L

Thank you Lesley that was very useful, Ive now shared this link with my friend. Have a good day too x

I have been on a phase one trial for over 3 years now and it has literally saved my life. I was not told about phase one trials at my local hospital and I was disappointed in the options available to me so I booked a consultation in London and was referred to the UCLH Research Facility in Tottenham Court Road. I was turned down for an immunotherapy trial but then was offered the one that I am on now. I was keen to be on a phase one trial as you are normally guaranteed to get the trial drug and not a placebo of chemo alternative. The care that you get on a trial is fantastic. My bloods are taken fortnightly and scans done every 8 weeks. I have travelled to London from Cornwall fortnightly since starting the trial although have been allowed to go to my local hospital during Covid.

Lollie2016 profile image
Lollie2016 in reply to Neona

Thank you Neona, you did really well to get onto a trial, sounds like it wasn’t too easy. Im so pleased that it has helped you. Sounds like they are also closely monitoring you which is good. I can imagine that journey must be tiresome but I’m so glad it is helping . Thank you for sharing. Hope all continues well. I will look into the research facility too, thank you. X

She sounds a likely candidate for the PARP inhibitor Niraparib, which has gone through trials and in January was licensed for the NHS to prescribe. It is for those who have responded to chemo and are BRCA negative. I am the same age and in a very similar position and have been given it by the Northern Cancer Centre at the Freeman Hospital, Newcastle. I am presuming she is in the UK. If so it would be worth her asking her oncologist about itx

Thank you for sharing this - we will look into this. I believer her oncologist will be trying to find out if she can have the parp inhibitor , so your message was useful , we will find out about Niraparib, thank you x

Hope it, or something similar, works well xx

I am 74 and when 72 was on trial ICON 8B 3months carboplatin along with 3 months Paclitaxel and bevacizumab more commonly known as avastin which stops cancer cells making their own blood supply was given op after first 3 months because tumours had then shrunk no avastin 4 weeks prior and 4 weeks after op. This was all administered every 3 weeks. T. After chemo stops continue with avastin total time 15 months now NED, no evidence detected and I had oc stage 4c. You ask to be on it and a computer decides. Hope this os help there is also ICON9

Lollie2016 profile image
Lollie2016 in reply to Madmolly

Thank you so much for sharing this. Very helpful. Im very pleased to hear that these trials helped you. We will look into these options too , thank you again x

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