Suggestions Please

[Beoony]

Hi,I have clear cell OC can anyone advice best consultant in the UK who specialises in this field. My chemo not responding.

TIA X

[Starbarn]

hi beoony. I’m not sure which part of the country you are in. If it’s the north then try Christie’s Manchester . Dr clamp /Jensen . They are doing trial for clear cell and will have more knowledge. If your in the south then try the marsden in London . Again they are doing the trials and will have more knowledge. I can’t remember the drs name but a few ladies on here will know. Also if you type in the search bar on this site clear cell it will bring previous discussions which may be of help. Good luck x

[Beoony in reply to Starbarn]

Thanks for you reply I'm in the North so Christies be better heard good things about Dr Jayson. Will have a look.Hope your well

Gill X

[Starbarn in reply to Beoony]

I’m under dr clamp but they work together along with dr hasan as a team. I’m doing very well thank you . I’m on ATARI trial for clear cell cancer . Hope you get the info you need x

[Neona in reply to Starbarn]

Hi Starbarn, I’l really excited that you are doing well on Atari as I have been on Ceralasertib for 5 years and 4 months now. My scans are slipping on the lowest dose of 80 mg and I’m desperate for the drug to be approved so that I can get the dose I need. How long have you been on it and are you on just Ceralasertib please?

[Starbarn in reply to Neona]

hi neona. I’ve been on ceralasertib 160mg for 7 days over a28 day cycle and 400mg olaparib everyday on a 28 day cycle . This month they have reduced my dose from 7 days to 4 as my bloods are struggling. They say it’s still works at the lower doses. I’ve been on the trial since jan 2022. The results so far are looking promising. I will say I’m brca negative which makes this trial even more exciting . I’ve also heard that the peacocc trial is doing well so that could be another option in the future. Try and keep positive.x

[Neona in reply to Starbarn]

I thought the peacocc trial has finished? Are you also on Olaparib as I haven’t understood the dosage? I have been on just Ceralasertib- started on 160 but was reduced to 120 because of high creatinine. Fought to stay on 120 against huge pressure on me to reduce to 80. 120 was fine but 80 not so good as cancer is increasing now.

[Starbarn in reply to Neona]

yes I’m on olaparib every day. The peacocc trial has finished but that drug is looking promising. I’m sorry it’s not working completely for you. How often are being seen and scanned x

[Neona in reply to Starbarn]

Scan is every 8 weeks. I have just had an exhausting phone call with trial team as I have asked for the dose to be increased- which is against the trial protocol. I am getting a lot of “ you don’t understand little patient” sort of stuff. Well I do understand and , since the trial has finished, I am asking them to not let me die for a protocol. Anyway they have arranged for me to speak to the guy in charge at my next appointment in London- he is very nice so fingers crossed .

[Starbarn in reply to Neona]

Hopefully they will get you sorted.and you’ll get the chance to discuss other options. I was told the same . Once it’s reduced it will not be increased.

[Hidden]

Hi Beoony

Really sorry to hear chemo isn't doing the trick for you, clear cell challenging disease.

I have reoccurrence of clear cell which didn't respond to chemo. I've been referred to Professor Gordon Jayson at The Christie Hospital in Manchester. My appointment is next week so I haven't seen him yet, but I've only heard good things about him. He has a lot of information under his name on the internet and seems to be very highly regarded.

If you want to chat privately about your experience please feel free to contact me.

Sending you lots of love and best wishes

Carol x

[Beoony]

Thank you for replying. Heard good things re Profesdor Jaysen. Will ask to be referred as my oncologist said nothing else can be done. Want to see if it can with there specialliaty in that field 🤞. Hope you get on good at your appointment.Gill X

[OvacomeSupport Partner My Ovacome Team]

Dear Beoony

Thank you for your post. I can see that some members of the forum community have shared their experiences with you which I hope has been helpful.

I just wanted to post an Ovacome information resource about getting a second opinion with you, which can be found here: ovacome.org.uk/getting-a-se... . This explains more about the referral process which I hope may be useful.

You may have already viewed our information booklet about clear cell ovarian cancer, but just wanted to include this in case you haven’t: ovacome.org.uk/clear-cell-c... .

In addition, I wanted to let you know about our rarer ovarian cancers support group. This is a safe space to speak with others who have been diagnosed with an ovarian cancer that isn’t high grade serous. If you would like to learn more, please visit: ovacome.org.uk/event/rarer-... . Our next meeting is on 11 May and you would be warmly welcomed to join us. We meet online via Zoom.

We are here to support you so please don’t hesitate to get in touch if you would like to talk anything through. You can send us a message through this forum, email us via [e-mail] or call our friendly support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm, to help with questions, provide information or just have a chat about anything that’s on your mind.

Best wishes

Annie – Ovacome Support

[BDBird in reply to OvacomeSupport]

Hello, Sorry to Jump in on your thread Beoony, but I'm new here but also have Clear Cell (Epithelial CCC stage 2), and had 1st Reoccurrence last year so following with interest. (I only had a partial response to Plaxtol/Carbo, now on Bevacizumab). I Just wanted to say thank you as I didn't know about these resources, so it's helpful for me too, Thank you OvacomeSupport 😊

Beoony - I hope you can get more information and a possible trial

🤞🤞

[Beoony in reply to BDBird]

Don't be daft you jump right on.... I'm on Bevacizumab at the moment which isn't working for me. Oncologist said that is all she can offer 😪

[Lookingahead in reply to Beoony]

can I suggest you ask to be refered either to The Marsden at Sutton or The Christie . Both these fabulous places are always doing trials for newer drugs x x

[BDBird in reply to Beoony]

😅 Thank you!!Sorry the Bevacizumab isn't working for you. I've been told it will only work for so long (I still have a ¾size of the reoccurrence tumour in pelvis area, attached to large bowel, that didn't respond to the Chemo, so it's trying to 'postpone' it for as long as possible, but inevitably will be back.

I *think* Royal Marsden are more advanced in trials etc, but I was told I wasn't eligible last year? I know CC is notoriously quite 'resistant' to Chemo, & trials are limited because it is a rarer type of Ovarian Cancer.

I'm keeping 🤞🤞for you that you can find an option for you xx

[Neona]

Hi Beoony, chemo didn’t work for me at all and I went to see Dr Rebecca Kristeleit in London snd ended up on a trial for Ceralasertib- have been on this drug for 5 years and 4 months so far with a maintained partial response. The trial has finished now and I’m not sure that Atari is recruiting new patients but it is worth asking about this drug. I was diagnosed clear cell stage 3 c in 2016. The targeted cancer reduced from total of 13.6 cm to around 6 cm over several years but it now creeping back up since the dose was reduced to 80 mg.

[Beoony in reply to Neona]

I've been told due to while I was on chemo and it spread to my lymph nodes that I would not be suitable for a trial. I am in Scotland. Feel I'm losing the battle, so annoying as feel great 😪

[Neona in reply to Beoony]

I would definitely recommend a second opinion on this . Every trial has a different protocol. I was turned down for the first trial they put me toward for. Names I recommend are Dr Jayson, Dr Rebecca Kristeleit, Dr Susanna Banerjee. Dr Rowan Miller at UCHL is possibly also a clear cell specialist. My oncologist at my local hospital told me that I wouldn’t still be here if I had stayed under him.

[carrotmunch5]

Good morning Beoony. I was diagnosed Clear cell in 2019. I've been with Addenbrookes hospital in Cambridge since. I had surgery at Queen Charlotte in London. With Prof Christina Fotopoulou. Both are very good hospital and have excellent consultants. Sounds like you live Manchester area, and everyone suggesting Christie's. Hope you get a good consultant and a treatment plan which works for you. Chemo didn do very much to me either. Hope your consultant find you treatment works for you. Sending you lots of love. ❤️🙏❤️P.s. there are few others mentioned ATARI trial, which worked for me too. I have been on Ceralasertib only since last January. There are trials available.

[Beoony in reply to carrotmunch5]

Thanks for your reply I'm in Scotland and more or less bern told I'm not suitable for a trial, my CA125 has jumped up to 81 so not looking great X

[carrotmunch5 in reply to Beoony]

If it's one or two tumours causing you this, ablation is also an option. Please get refered to those hospitals others suggested, and they might come up to different ideas🙏❤️🙏❤️

[Starbarn in reply to Beoony]

they also do trials at Edinburgh. I believe they did the atari trial there. It may have closed but have a look on cancer research . Unfortunately not all hospitals are aware of trials . You’ll have to do the leg work yourself and bring it to your oncologist’s attention. 🤞🏻

[Beoony in reply to Starbarn]

Thank you so much X

[lesleysage in reply to Beoony]

Hi Beoony, as you are in Scotlaand your best bet, in my...and many, many others, opinions (!!) is Charlie Gourley at Edinburgh Western General.:-

ed.ac.uk/profile/charlie-go... and below maybe of use too.

youtube.com/watch?v=nZHv4w7...(Not working as expected?)

And as Annie at Ovacome says, they too have resources and guidance on a second opinion is great. I took that on surgery (see below) to gave me a chance with the location of my clear cell that Addenbrookes in Cambridge didn't want to touch - that was in 2013.

If surgery is needed, Proifessor Christina Fotopoulou definitely saved my life with her surgical skills. The skills of the surgeon, their team as well and the 'kit in the operating theatre' are crucial. Charlie Gourley would be able to guide you here too, am sure.

Warmest wishes, xx

[Beoony in reply to lesleysage]

Thank you so much X