I’ve been away from this sight again but check the posts periodically.
I was diagnosed 3c in 2016, had fully optimal surgery and chemo and had 3 yrs remission. I had my 1st recurrence 2.5 yrs ago and again went into remission. I’ve been on Olaparib for 2 years but my ca125 has suddenly gone up to 50 last month and 92 this month. Feeling gutted and will be getting a scan. I suppose I just want to know how many have had remission again after a 2nd recurrence? Very emotional hearing this today, after 6 years of constant worry I feel like I’m not going to find the strength (although I know I have to)
You ARE strong enough to fight it again (IF it’s back) and don’t dare doubt it! You have done it before and will do it again. You have a whole load of us Teal pals to support you too! Chin up and fighting knickers on! 🤗 xxx
Thank you Emsy, you’ve made me cry. (In a good way), I have to pull myself together don’t I ? Xx
Hi Marian. I am sorry to hear that you have been through so much worry. You will certainly find the strength to go through another round of treatment, if that what you have to do. But maybe your CA125 is elevated for some other reason. I’ll hope for that for you. Anne 🤗
Thank you AnneWhilst I want to believe that something else has raised it, I can’t convince myself xx
Sorry to hear you may be facing a 2nd recurrence. Albeit I’ve been on Olaparib trial I have achieved my longest remission yet after a second recurrence 8 years 10 months). So although Olaparib may not have given you a longer remission it doesn’t mean that there isn’t something that can xx
So nice to hear from you Marian, I’m so sorry you have this fear hanging over you. I know I am preaching to the choir here but could you have an infection or inflammation that could have caused your level to rise? If that’s not the case then I’m sure there are options they can look into for you. As always, we’re here for you, please let us know how you get on lovely lady. Lots of love and encouraging virtual hugs ❤️Xx Jane
You can do it Marion, if it is recurrence, but realise that if it does turn out to be it is always disappointing. I am on a second recurrence, and just done 3rd cycle of carbo/caelyx,which is working and hopefully will continue to do so. However like most I always think about, how long before it returns!!!
It has recurred in lymph nodes in chest and peritineum. My Oncologist said the chemo had 70 percent chance of working which I must admit I was surprised about,with a 2nd. recurrence. This happened approx 15 months after 1st recurrence, for which I had carbo/gemsar, followed by the parp rucaparib. My CA 125 went down to 12 following that chemo,but once on the parp it never really stayed stable, and continued to rise. I did have a CT scan last September which was clear,but had a further scan in March which then showed the pesky lymph nodes had risen. Take care and let us know how you get on.x
I only reached NED once in March ‘18, clear for nearly 2 years. When it re-occurred I was informed it was now incurable. I received good results after 2nd line treatment, but not clear. 2nd line finished July ‘20. Symptoms started again Feb ‘21, I was offered surgery for one of the expanding areas, however I had to go through a CT, MRI, a colonoscopy and a PET scan which took till July to complete, by this time it had got into a lymph node in my neck so I was no longer a candidate for surgery, gutted. So returned to chemo (3rd line) in August ‘21, completed in December. Following all the delays through the summer and surgery snatched away, I did get very upset and developed a very bad feeling about this time round. Wondering I w could return to a normal life this time. However my CA125 got back down to 84. I’ve been abroad twice this year and had a lovely week in Dorset last week. I didn’t think I was going to get back to work this time but am now on a staged return. Luckily I can work from home now. So though we do worry, we can do it again and again. We are Teal Warriors. Good luck with your continued battle 🦋🌻 💪 x
Hi Marian. Sorry to hear about your recurrence. My mum recurred quite soon after finishing first line chemo/debulking. She then had Caelyx which kept her stable for around 18 months then the beast woke up. She had Carbo/Taxol again. Finished in June 17 and has been in remission ever since. She had a scan around six months ago which showed NED. She has a blood test and phone consultation at end of June and I can't help worrying. I hope thing are OK for you and that it's just a blip. It must be a constant worry. Sending virtual hugs. Jane xxx
Hi Jane, thank you so much for this. Wow that’s amazing after a second recurrence to go this long. Has she done anything different? Xx
How are you doing since, Marian? Maybe you replied somewhere else and I missed it.
I’m going through my 2 recurrence now. OC in my colon, bowel, liver and sons lymph nodes. Inoperable. I’m starting Carbo & Gemzar on Monday. I haven’t talked to my oncologist yet so I don’t know what he expects from this chemo.
The answers to the question you asked here was so useful to read again.
I hope that things are going well for you.
Anne 🤗
• in reply to
Hi Anne
I’ve had a CT, shoulder MRI & a brain scan - all clear except for tendinitis in left shoulder. I also have a new neck lymph node, but Oncologist says it’s small and he’s doing nothing about it for now.
CA125 still rising so Oncologist says it’s watch and wait until CT shows the blighter and I get symptoms.
I must admit that I’ve always dreaded a ‘watch and wait’ scenario as I feel so vulnerable but no amount of discussion would change his mind. I see him again at the end of August and see where we go from there.
I’m so sorry that you are having to go through all this again. How long is it since your last chemo? I don’t know much about Gemzar. I will keep everything crossed that it works it’s magic for you, keep me posted, sending positive hugs 🤗, Marian xxx
• in reply to
Did any of you ever have burning diarrhoea after chemo? And, if so, did you find any way to ease it?
That’s so kind, Marian. Thank you. I finished chemo 1 in 2016 & chemo 2 in 2019. I was on Olaparip since the end of chemo 2, May 2019. I hoped it would keep me safe for longer but this OC was determined to return.
Watch & wait is definitely hard. I hope you’re feeling quite well and can maybe distract yourself by doing some nice things. I hope you do. Let us know.
Keep me up to date too. It’s really lovely to be in touch with someone here about it and your message made me feel supported today. Thank you 🤗😘
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