TRIALS

[Alfiepop]

Hello

I am posting in the hope that it might help some of you….

I live in the UK and was diagnosed with HGSOC grade 4 in Jan 22. I have never been NED.

I received first line chemo + Avastin, interval, suboptimal surgery then commenced Olaparib.

Avastin continued for the permitted time and Olaparib kept me progression free until July 2024.

My oncologist offered chemo (Carbo/Caelyx) as my next option. He explained that the chance of reacting to the Carbo would be increased and that if I was unable to tolerate it I would receive Caelyx on its own and I explained that I felt frightened by this prospect.

I had previously assumed that trials were considered when standard treatments were exhausted…. I was wrong. I had made a note of trials that I had researched some time ago and so mentioned the GLORIOSA trial to my Oncologist. He thought it was closed…he was wrong and encouraged me with my decision to be referred for consideration.

I’ve received my first cycle of treatment on the trial but had a reaction to the Caelyx so will be switching to Gemcitabine/Carbo/Avastin.

I am so fortunate and thankful.

Please don’t assume that your care team will know or offer you all possible options.

We can’t control the cancer but we need to lookout for ourselves while we can.

I haven’t gone into details about the trial but it is 1 of several that you might be eligible to be considered for at some stage.

Sending my very best wishes

Lisa

[candyapplegrey]

Hello, Thanks for sharing. I've been told by my team there are no trials then a friend told me my former oncologist was running one on my type of cancer. You're so right. They're either too busy or too confused, I don't know. xx

[Fluffyjumper]

Unfortunately we have to advocate for our own health. My best friends CCOC has spread within 6 months of completion of 1st line chemo. She’s just started carbo/caelyx and was told this was ‘last chance saloon.’ Her consultant wasn’t aware of any trials when she asked, although my understanding is that there are current trials at The Christie. My cousin had a similar experience at the same hospital. She was told that nothing more could be done for her rare uterine cancer and that she had 12 months at best. She found a trial at the Royal Marsden and is still here 10 years later.

[Starbarn]

Hi Lisa I was in a similar position and had a very similar story.

I have found that you have to speak up when it comes to treatment. I found a trail and managed to get on it. It worked well for me accept 2 small areas.

They decided after many scans it wasn’t working and should go back to chemo . I told them my concerns as chemo doesn’t work very well for very long .

After many mdt meeting I had surgery on my bowel . It turned out no to be cancer . I didn’t need a stoma or radiotherapy. I feel very lucky I have a team that listen and explore. I am no longer on the trial as it’s done its job .

[Motiva]

Well done for finding a suitable trial. The hope the medications work well for you.

F x

[Towergirl]

Thank you for sharing I found it interesting that the Gloriosa trial was first not available then you persisted and got on it. Well done .

Like you when first recurred I investigated trails without realising most are for when your not Chemotherapy sensitive.

I asked my consultant to refer me to Gloriosa trial to be told not available to me! I’m now paying privately for Avastin which I wanted to try as didn’t have at first line.

Hoping it works for both of us, best wishes .

[Leniko]

I couldn’t agree more! We must be our own advocates!!

[Gerontious]

Hi Alfipop, thank you so much for that information. I'm on Naraparib at the moment but I'll bear this in mind for the future.

[SopSinger]

Great news, Alfiepop. Keep up the good work!