Reoccurrence Clear Cell OC

Hi, I was diagnosed with CCOC in December 2021. I was told after surgery that I was clear of cancer and had nothing to worry about. I had 6 sessions of chemo as an adjunctive treatment and declared no evidence of disease (NED) at the end. In January 2023 I've been diagnosed with a reoccurrence; I am currently being treated with Carboplatin and Pacliataxol again which doesn't seem to be doing much. My Oncologist is meeting with the MDT to discuss what else can be done for me and she is also referring me to The Christie Hospital to see if there are any trials available to me. I'd love to connect with anyone with clear cell, I'd really love to hear some good news stories.

[Bananasmoothie]

Hi Cazzar, I have CCOC although no recurrence yet. Sending you hugs and positive thoughts x

[carrotmunch5]

Hello Cazzar. Lovely to connect with you😊 Sorry to hear your news. When we hear the word recurrence, it devastating. I too diagnosed clear cell in 2019. I have been with Addenbrooke's in Cambridge since my diagnosis. I also had Carbo and Pac combo chemo but didn't work. Since my surgery in 2020, my cancer has spread. I have been on clinical trial since. I was on a trial, which was gem and ceralasertib for a year then I have been on high dose ceralasertib since. A couple of tumours which oncologists was most concerned in my liver actually disappeared with this trial. I am currently waiting for MRI results sent to liver specialists to see if there's recurrence ( CT and bloods suspect recurrence on where I had ablation last year to one of my tumours) It's worrying but I just do whatever I can do each day. Embracing everyday things like sunrise, sunset, stargazing, and birds singing... I do hope your consultant will find a trial suits you or available at the time. And also those oncologists meetings are good, better to have many brains than one brain! They might come up with different plans! Sending you lots of love🙏💜🩷🌻🌸

[Hidden in reply to carrotmunch5]

Hi Carrotmunch5,

Thank you for such a lovely reply, if you feel up to sharing I'd really like to know the results of your MRI scan. You are in my thoughts, I wish you nothing but the best xx

[Pingseefeld]

hello Cazzar, I’m so sorry to hear your news. I’m also CCOC - it’s such a rotten diagnosis isn’t it. I’m on a Fb gp specifically for women with CC from across the world if you would be interested in joining? Lots of discussion about treatment options.

Sending you loads of love ingrid

[Hidden in reply to Pingseefeld]

Hi Ingrid,

Thank you for taking the time to reply. I have to say it's a very scary diagnosis, one that's left me feeling at a loss, so it's really good to hear from fellow clear cells who really get what we go through. I was in some of the FB groups but ended up closing my account because I was becoming obsessed with scrolling, I was doing it all the time and it was making me very miserable and down. I'd love you to keep me updated with your experiences if you are happy to share on here.

Lots of love and luck

Carol xx

[Hidden]

Hi, I too have CCOC, had debulking surgery 3 months ago and now half way through my chemo.

I'm so scared that I will get a recurrence as CC is so resistant to chemo. Its easy to say dont worry but we all do, medicine is changing everyday and success rates are improving.

There was a lovely lady on here who at 71 had two recurrences and was winning again!

Here if you need to chat xxx

[Hidden in reply to Hidden]

Hi Bunny

Lovely to hear from you. Please try not to spend your time worrying about reoccurrence, I had lots of time when I lived a completely normal life, reoccurrence never entered my head. Just make sure you have a follow-up plan once your chemo has finished and you know what to look for. I didn't have one and wasn't seen until about 8 months after mine ended.....

Please keep in touch xx

[Hidden in reply to Hidden]

HeyThank you, will defo keep in touch and updates on my own progress too

Take care xx

[Yorkiepudd]

Hi Cazzar, I’m clear cell too and was treated at The Christie. I’m four years post op (started treatment July 2019) and currently still NED for which I know I’m incredibly lucky. I had a side order of womb cancer as well so also had radiotherapy.

I feel for you as it’s such a difficult beast xx

[Hidden in reply to Yorkiepudd]

Hi Yorkiepudd

Thank you for replying, it's great to hear about someone who is doing well especially after a doubly whammy that must have been a really tough time for you. Long may NED continue, I'm hoping to make a friend of him in the future

Best wishes for the future, keep in touch xx

[SopSinger]

I had mixed clear cell and endometrioid ovarian cancer (stage Ic), with a side of endometrial cancer stage Ia. 17 years ago and I have never had a recurrence. Hope the trial works out for you. The Christie is a great hospital and has a worldwide reputation.

[Hidden in reply to SopSinger]

Hi SopSinger

Thank you for taking the time to reply, I very much appreciate it and it's brilliant to know you haven't had reoccurrence for so many years especially after having two cancers. I've heard lots of great things about The Christie although I don't want to get my hopes up too much.

Best Wishes xx

[SopSinger in reply to Hidden]

I wasn't treated at the Christie (just at my local hospital) but it has an excellent reputation. Prof Jayson is very highly thought of.

[Mariej2021]

Hi Cazzar I have OCCC too diagnosed 1C3 Sept 2021 and finished treatment 2022 So sorry to hear you are going through this. I asked my Oncologist at end of chemo what treatment would I have if recurred and they did say Carbo Taxol again if recurred after 6 months. I believe they follow national guidelines which are for Ovarian cancer in general not specific for clear cell. From reading lots of posts there is a wide variety of treatment strategies for recurrence depending on site accessibility to surgery extent etc while first line treatment seems standard to everyone So this is definitely the time to get opinion from a national centre with special interest in clear cell. My other suggestion is to phone the Ovacome helpline and have a chat about options with them They are very supportive and helpful I hope you get sorted with a plan This time not knowing what is going to happen is very hard Sending you good wishes

[Hidden in reply to Mariej2021]

Hi Mariej2021

Thank you for taking the time to reply, every reply means such a lot to me, people are so kind. I am looking forward to going to The Christie (surprising what I get excited about these days). Your right, one of the hardest things is not knowing what's going on and waiting for results etc., very stressful times which I don't think is appreciated until you are actually living it.

Best Wishes xx

[Starbarn]

hi Cazzar. I have clear cell cervical cancer. I was diagnosed in may 2020. I had a radical hysterectomy in July 2020. But like you within 6 months my cancer was back in my peritoneal. I had just carboplatin which worked for but again returned in 6 months . It was suggested a trial call peacocc which is immune therapy but the trial had closed but I hear it is doing well and may be an option now.

I am now on the Atari trial and have been for 15 months and I’m no visible disease. They did stop recruiting for this trial but have started taking people using a different trial name but same drugs. This is at the Christie’s so you hopefully you will get something to try so don’t lose hope.

good luck and I’m sure you will hear from the Christie’s soon . X

[Hidden in reply to Starbarn]

Hi Starbarn

Thank you for taking the time to reply to me and for the information about trials. It's really good to hear you are doing well on the Atari trial, I really hope it continues for you.

I'd love for you to keep me updated on what's happening to you while on the trail, it's a scary thought for me, but good to know we could be helping women in the future to overcome this bitch of a disease.

xxx

[Starbarn in reply to Hidden]

hi cazzar I do put an update from time to time and info If I can. I’m under dr clamp and he has a lovely manner as are all the team. Good luck and keep in touch x

[lesleysage]

Hello Cazzar,

Please ask your team to check out the PEACOCC Trial results (Christie's should know about this) and ask if your disease 'attributes' are in line with secondary surgery, details of which are in my next paragraph. I am the patient rep on the PEACOCC Trial although, thankfully, never had to be on it as a patient

I was diagnosed with stage 3C CCOC in May 2011 (Total abdominal hysterectomy + carbo/taxol) with recurrence in Jan 2013. Following the oncologist's decison at Addenbrookes that "surgery was dangerous with highy mortality rates and hence more carbo/taxol would buy me a few more months of life", my GP supported a second opinion with Professor Christina Fotopoulou. She undertook ultra-radical surgery - see Ovacome's leaflet: ovacome.org.uk/secondary-su... for details which may help your choices?

Obviously, I am still here to tell the tale and have had no further recurrence of CCOC although I was diagnosed with a completed unrelated bowel cancer two years ago.

My husband and I are just back from two days celebrating our 77th birthdays using our electric mountain bikes in the remote tracks across the Caithness Flow Country! Absolutely 'cream-crackered' but very much alive... enjoying a glass of wine by the fire!

Warmest wishes and please keep asking questions and nourishing your hope and health. x

[Hidden in reply to lesleysage]

Hi Lesleysage

Thank you so much for such an informative reply and Happy birthday to both of you I am sorry to hear you've had to deal with bowel cancer on top of CCOC, what a bummer so to speak! I'm looking forward to going to The Christie, I've heard so much good stuff about it but I don't want to get my hopes up too much. I believe I will be referred to Prof Jayden or Dr Clamp....... I read the Ovacome leaflet, you're a very inspirational person, just the kind of story I need to hear.

I'll update you with the plan when I know what it is

Best Wishes xx

[lesleysage in reply to Hidden]

Hi again, Cazzar, this was lovely to receive, so thank you so much for your time to reply. Andrew Clamp is the researcher who is on the PEACOCC Trial Management Group, of which I'm the patient rep, so he and Prof Jayston will be great combo to look after you.

Yes, please do keep us all in touch with your ups and downs...just as those of us here know.

Really good luck, keep being kind and gentle to yourself and those you love through the challenge of the days ahead - and hold onto hope. xx

[OvacomeSupport Partner My Ovacome Team]

Hello Cazzar

Thank you for your post. You've had lots of helpful replies from the forum members. I just wanted to provide some further information which may be of interest.

Our clear cell ovarian cancer booklet can be downloaded from our website here: ovacome.org.uk/clear-cell-c...

We can also send you a paper copy if you prefer.

You mentioned wanting to connect with others who have clear cell, and I wanted to let you know about our friendly rarer cancers group which meets online once a month: ovacome.org.uk/Event/rarer-...

lesleysage mentioned the PEACOCC trial, and there are details here: cancerresearchuk.org/about-...

There is also details for the NICCC trial here: cancerresearchuk.org/about-...

The ATARI trial details are here: icr.ac.uk/our-research/cent...

These trials are closed to recruitment but as lesleysage mentioned, you may want to discuss these with your oncologist. The BOUQUET trial is currently open and there are details here: forpatients.roche.com/en/tr...

I hope this information is helpful. Please don’t hesitate to get in touch with us if you would like to talk through anything or have any questions. You can reply directly through this forum, email us via [e-mail] or give our friendly support line a call on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm.

Best wishes

Anna

Ovacome Support

[bananayo]

Hi Cazzar, Sorry to hear you’ve had a recurrence… I was also diagnosed in December 2021 with clear cell and also had 6 taxol/ carboplatin which completed June 2022. I get three monthly checkups at the moment, had a scan in February which was clear but I still freak out about aches/pains which triggers anxiety about recurrence! Good luck with the Christie on getting on to a trial and let us know how you get on, best wishes xx

[Leniko]

I’ve been living w clear cell since 2008. Yes I’ve had Chemo, radiation etc over the years to knock it back. We do what we have to do. Avastin kept things at bay for a number of years. Once that stopped being effective, they prescribed immunotherapy, which I will start shortly. The good news is, I feel good. Keep fighting!

[win_56 in reply to Leniko]

You've had OC for 16 years?!!!

[Leniko in reply to win_56]

Yes! I’m still here!!

[win_56 in reply to Leniko]

What an inspiration you are to all of us. Wishing you all the very best for the future.😘💞

[Leniko in reply to win_56]

I’m glad to hear that. I try to stay positive and encourage others to try to do the same! Bless us all! ❤️🙏

[win_56 in reply to Leniko]

😘

[win_56 in reply to Leniko]

😘

[Leniko]

I am being treated at MSK in the US. After initial OVCA diagnosis in 2008, I had some clear cell tumors appear in my back psoas muscle in 2014. Radiation didn’t seem to shrink them. I will now be trying immunotherapy, a combination of OPDIVA and YERVOY. It’s been showing good results with OCCC. The best of luck to you.