So went for chemo no.4 today, as no. 3 had made me ill with terrible side effects they decided to stop the paclitaxel and just do the carboplatin. White blood cells were low but still ok to go for the carboplatin.My CA125 is now down to 10.
Just very scared and confused as clear cell is rare and known to recurr, even though I'm stage 1c2 I'm still having terrible anxiety
Any good news stories would be most appreciated x
I’m afraid I don’t have any experience if tye type of ovca that you have but I’m sure that if you ring the helpline at Ovacome there would be someone there who could give you some news about current treatments and likelyhood of recurrences. Look on the Ovacome website for the number and opening hours of the helpline. All the best to you.
Love Wendy xx
Hi, I’m clear cell too and the same staging (2019) Paclitaxel on my last chemo was reduced slightly due to neuropathy not easing between cycles. What did help massively on the last two cycles however was the nurse extended the steroids on a reducing dose. My understanding was that Carbo is the ‘always’ and the other is a secondary mop up. Your CA125 is brilliant and they must feel confident that going for the single agent is right for you.
You’re over the hump now 💪 xx
How are you doing now, xx
Still NED thankfully and if no recurrence, will be discharged next year. I had womb cancer as well so certainly never count my chickens and there is always that niggling doubt waiting for bloods, but most of the time it’s like 2019 happened in a dream xx
Hi Bunny, I am clear cell and was in a similar position as you, IC2, reacted to taxol on my second infusion which was stopped and I continued 6 cycles on carbo only. I am now in my first reoccurrence; all I would say is make certain you are followed up at the end of your treatment. For some reason I slipped through the net and wasn't followed up until 7 months after my treatment ended.
Best wishes
Carol xx
Hi, have they discussed treatment with you regarding recurrance, just would like to know the treatment plan if this was to happen with myself x
Hi, they put me back on Carbo and Taxol with lots of cover to make sure I could tolerate the Taxol which worked. I had 3 cycles followed by a scan. Unfortunately the chemo was not working so it was stopped. I have been referred to The Christie to Prof Jayson; I'm waiting to see him then I'll know more x
Good luck with your referral, heard his very good x
Hi Bunnyj,
I was diagnosed with exactly the same as you in April 2021. I was unable to have chemo as I had a large open wound and the risk of infection outweighed the benefits of the chemo. I’m 2 years down the line and have just had results from a CT scan and I’m no evidence of disease. I had a bulky lymph node they couldn’t get and it has shrunk. My CA125 is 4. I hope this gives you some reassurance. Ovacome have a rarer cancer support group, there are quite a few clear cell ladies in there, if that would help. I’d be lying if I said the anxiety goes away, but mine has lessened with time.
Thank you, it's the recurrance that is causing my anxiety, I havent even got through treatment yet and already worrying about it, I'm.lucky that I have counselling through our local cancer network team.Thank you again x
Hi Bunnyj, I know. You're among friends who know how you feel. It does get less overwhelming. Sending hugs x
Hi Bunnyj😊 I understand your concern for recurrence. I also have clear cell diagnosed in 2019. I did well with treatment and recovery from surgery. Then spread. Thanks to trial drug Ceralasertib, two of the most concerned tumours went away. I had an ablation last year, at the moment, I am currently waiting for a surgery for recurrence on where I had ablation. Hopefully CT scan for pre op appt coming through soon. At the moment I am looking forward to going away in France which is in two weeks away. What food I want to eat, where I would like to walk, chilling out in ruined church in a mountain with blue sky💙 I am focusing on what I have at the moment. it is challenging this journey for all of us. Certainly tests my patience , I am not good at waiting , I wanted everything to happen yesterday 😆 But we can get through this a day at a time, or even a minute at time. You are brave lady, knowing clear cell might recurre in the future. Please keep reaching out whenever you feel worried, concerned or any feeling you might feel. We are all here for you. 🙏🩷🙏🩷🙏🩷
Thank you all for your lovely comments and support x
Hi Bunnyj, I was also same stage as you diagnosed in Dec 2021. I had chemos 4, 5 and 6 reduced by 25% as my neutrophils were very low despite having the filmgrastin injections and I was a month late finishing treatment because of this. I don’t think for me the anxiety about recurrence will ever go away but I’d like to think that it will get easier as time goes on. I’ve also had some counselling and I try very hard not to let the fear of it returning ruin the here and now. Best wishes xx
Thank you x
Diagnosed with mixed clear cell and endometrioid ovarian cancer (with a side of endometrial cancer) in 2006. 6 cycles of carboplatin alone (wasn't allowed taxol because of my allergy history). Still here, 17 years later, no recurrence!
Your reply has certainly cheered me up, thank you. Managed to get out the house today and to the coast. Sea air helps x
Hi Bunnyj I worried a lot too about what treatment etc It does get easier the more time passes I also think that the number of treatments is not an absolutely exact science anyway and responses are very individual Some centres would follow the NICE guidelines to the letter and only give you 6 Carboplatin only for 1C2 in the first place So you will likely do just as well on 3 Carbo + Taxol and 3 Carbo Best wishes for getting through to finishing the chemo xx
Thank you, I just wish I could control my anxiety as usually I'm such a positive person. Bloody cancer just changes everything in your life...mentally and physically x
Clear Cell Carcinoma stage 1c
Clear Cell Carcinoma
Clear cell ovarian cancer 
Ovarian clear cell recurrence
Clear Cell Ovarian Stage 1c
