Hi everyone, I hope your all well tonight? I was diagnosed with clear cell ovarian cancer stage 3 a2 grade 3 at the end of May last year. I had the full debulking surgery the month before, my cyst was huge and burst inside me on the operating table containing 4.5 litres of fluid.
I started paclitaxel and carboplatin and had 6 cycles every 3 weeks finishing on the 27th September. My CA125 remained at 10. I began Niraparib in the November and my CA125 was already starting to rise although I didn't know until just before christmas when I went to see my oncologist. I'd stopped phoning up about that as it just made me anxious. Anyway she believed it was the Niraparib as apparently it can cause some problems. It was 40 at that point and I had an uneasy feeling. By the time I had my next bloods done it was 50. I had my CT scan done shortly afterwards and she believed it was back in the nodes in my pelvis and they would give me radiotherapy.
Anyway she wanted to do a PET scan to make sure and it is in numerous nodes throughout my body including collar bone node. She said so much over the phone (she has covid) it was difficult to take in but it doesn't sound like its in my organs. She said my liver is clean which has surprised her and it is only small in the modes. She has now said it can't be cured but they will look at keeping it at bay for as long as possible. Also that one of my nodes in my pelvis had cleared itself somewhat although not completely from the two weeks between the two scans. I got all excited at this but she said no as it's only one node and means the Niraparib partially worked. I have to come off it in two weeks time.
She's spoken of chemo for life now which horrified me and possible trials at The Marsden but I wouldn't be able to have chemo if I was going on the trial I think she meant. I'm happy to try a trial I will do literally anything. I am absolutely devastated I'm 44 and simply not ready to die, I played it by the book I exercised got my BMI down to 23 and have eaten mainly organic foods yet still this has happened so quickly. If any of you ladies have any experience of clear cell and this has happened to you or any information at all I would be very grateful. Thank you xxx
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monkeytwo
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I’m so sorry to hear of your recurrence and its understandable how you are feeling right now. I’m also facing a recurrence of clear cell and I was approaching 5 years clear when it was detected, I’ll be starting chemo soon. It is scary when this happens and then you read online about clear cell and get even more scared, but there is lots to be hopeful about now and tons of treatment options, it’s a case of finding the right one and the best team to look after you.
Not sure where you are based in the UK but as you have recurred very soon after initial chemo you may consider a trial and they tend to be available in the specialist cancer hospitals, so the Royal Marsden for example. I’ve transferred my care to The Christie in Manchester as wanted a second opinion, and I know they have a trial there called Atari and it’s for clear cell gynae cancers and some ladies on here are doing very well on it. It’s a mixture of targeted drugs and the parp inhibitor Olaparib. They might have an arm of this trial in the Marsden as well?
There is a group on Facebook for clear cell ladies and a lot of those ladies have been on immunotherapy treatments as well (drug called Keyruda) with much success but I believe in the uk this would only be available on a trial. You could also ring the Ovacome helpline for some support and I’m sure they would give you more information on the latest options. Please don’t give up hope and I know it is hard, I was diagnosed at age 49 and I’m still here and facing chemo again, but hope for another long remission.
So sorry to hear all your worries and concerns you are young and that will help you get through this
I will be 3 years 6/16/2020 since I was diagnosed at 55 with Stage 4 ovarian cancer . I am here and living my life .
After 3 initial rounds of baseline chemo and major surgery my diagnosis was switched to stage 4 Uterine serous HER2+ Mutation cancer
My cancer was NOT classified as genetic or hormone induced nor weight induced or alcohol or anything else for that matter
I exercised , ate organic, didn’t smoke and drank moderately like a glass maybe a week nothing crazy , I wasn’t overweight and I had no hormone issues
I had no idea At all that I had cancer
In fact many many many ladies do NOT fall into the high risk group and for reasons they don’t
Know about yet we get advanced stage gynecological cancer
It’s not talked about much and is often the last slide in any presentation you will see but we are here
I was NED in January 2021 but like so so many advanced stage cancers be It ovarian or uterine (as in advanced stages they are similiar ) the cancer returned albeit just a few nodes but it came back
I’ve learned it’s a journey ; it is a sucky journey but it’s a journey none the less ; your life changes forever but you somehow manage to move through it
I’ve been on a trial drug and clear since June 2021. I go every 3 weeks for the antibody chemo drug called ENHERTU
IVe worked full time through it all . Take care of my kids one in college one in HS
Started playing golf last year (I’m not
Good) lol and just started getting back to other exercises
I traveled a bit last year and this year I have two overseas trips planned
Getting my head wrapped around this treatment is the rest of my life to be honest is still something I struggle with
But I promise you Lizz if you stay positive fight like hell and don’t give up you can have a long journey and we can both be here many many many years to come
Prayers for you ! Keep up that positive fighting spirit
Hi Margaret, thank you very much for your kind response and your real empathy. I'm so pleased you've managed to continue having such a good quality of life. They asked me initially if I smoke and drank. I've never smoked and I drank a couple of bottles of wine over a seven day period. They said that wouldn't be enough in itself and I know there are plenty of people out there drinking far more than that. I haven't had a drink in a year now. I feel in myself it was because I was a real worrier. I don't just mean something that stays with you for a day or two. Things used to worry me continually and I had very stressful jobs.
Everyone thought I was really resilient and strong but I wasn't but didn't feel I could tell anyone, I'm a qualified counsellor and should have known better. The more stressed I became the more my stomach would burn but I just used to ignore it. I thought because I was young I was untouchable with illness. Clearly I was very wrong xx
Hello, Like Lizz49, I too suggest contacting the Ovacome Support team. I'd also suggest a second opinion with one of the top teams, e.g. as Lizz49 says, Prof Jayson at The Christie, Manchester, or I personally used Prof Christina Fotopoulou at Imperial in London in 2013 for sugery to remove my clear cell recurrence, both of who are on the Ovacome Panel of Experts and very supportive of the charity.
There has been a trial on Clear Cell, using Pembrolizumab, an immunotherapy agent which has been successful with a few other cancers./ There are also other trials in the pipeline specially for clear cell, so before you make any decisions, checking out the second opinions and trials is my suggestion. Ovacome will do all they can to help.
Warmest wishes, and please don't give up hope even though we all know how dark some days, or parts of days, can feel. Lxx
Thank you very much for replying. I've just read your story and am amazed that your still here after this length of time. Thank you for your advice. the thing is though to get second opinions from these people I'm talking waiting lists and waiting is time going and possibly it spreading. I'm very uneasy with the node near my collar bone and can't help but think it isn't far from my brain. I have a brilliant oncologist and she's contacting someone at the Marsden about a trial but somehow I feel I should be on chemo now as well to keep it at bay.
I see your originally from Lincolnshire. I live in Lincoln xx
Hello again, I am so pleased that you trust your oncologist as I did not trust mine at Addenbrookes, where I was sent by my GP in 2011 at my first occurrence. I should ask her about Lizz49's suggestion for The Christie (I know they are part of the immunotherapy clear cell trials team) and mine for a second opinion as the Marsden is the 'standard fall-back' for most cancer clinicians 'in the sticks'.
Regarding time, I really relate to the anxiety inside or maybe the pressure put onto you by your current team 'to get going' as I felt in 2013 from Addenbrookes; my logic was that known chemos in 2013 hardly touched clear cell, whereas surgical removal was considered the best possible chance of eradicating or slowing it. Second opinions should not take time - my GP and I decided on the Wednesday evening that this was worthwhile, so Thursday he sent off all his notes and I talked with the Addenbrookes team who 'wizzed' through all my scans, operating notes etc. to Prof Fotopoulou and her team ready for their MDT meeting on Friday afternoon. One of the team rang me Friday evening to relay their considered decision adding they could operate a week the following Thursday, which was actually Valentine Day 2013, so my 10 year annivarasry is next Tuesday. I rang Addenbrookes the next morning (the Saturday) to cancel the planned chemo on the Monday. I returned to Addenbrookes for post op chemo.
There is now the immuntherapy trials which Marsden may be able to help with, but certainly Prof Jayson's team will.
Whist sensing your real desire to attack the clear cell as quyickly as possible, asking questions over this coming week may, just may, open different doors. And, if it doesn't and your current team's decision is confirmed as best, then my guess is your mind will feel calmer.
Lots of warmest wishes for thinking as clearly and calmly as you can; please use all the good listeners around you and clinicians to support you as you make up your mind. As my daughter said to me, "This is your life, Mum, so this is your decision - for you, not any of us." Lxx
So sorry to hear about your recurrence. I had similar news fairly recently (although I'm not clear cell). My oncologist has pencilled me in for chemo end of March but in the meantime contacted the Marsden about trials. I had a consult with them within a week and am waiting to hear if I will be accepted on one, with the chemo still there as a back up. I've felt a lot better knowing experts are on to it and looking at options. I hope this is of some help xx
Thank you for that. I was told last Wednesday and haven't heard anymore from the oncologist. Just curious did you have to go in initially or was it zoom? xx
many targeted therapies and immunotherapies are well tolerated and can be given for years to keep OVCA under control. You’ll get through whatever you need to do, one day at a time! 🙏❤️
I totally understand your mood. I’m on Gemzar and some days I’m so nauseous and tired that I feel like a real “cancer patient”. But I have decent days too. This disease comes with plenty of mood swings. Please try to stay positive. The mind-body connection is very powerful! ❤️
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