It's that time of year again in the UK when the clocks change, which means its time for an update post which I will pin to the side bar.
If you haven't posted for a while but would like to let your forum friends know how you're doing, please do leave an update in the comments below. You are of course always welcome to start a new post with your news, but it won't be pinned so may get a bit lost on such an active forum.
It will be great to hear how you're all getting on.
Best wishes
Laura
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I'm doing fine, if slowly, because of back problems. I am a 10 year survivor of stage 3c (serous high grade), without a recurrence so far, touch wood. Wish everyone here & at Ovacome all the best xxx
I’m doing fine. Still no recurrence of stage 3c/4a OC just over 8 years after finishing first line treatment. (No recurrence of stage 2 breast cancer diagnosed in 2015 either.)
Hi I’m fine and still doing well, with no recurrence after 3 years of stage 3a OC and busy working as a carer. I wish everyone well in these awful times, stay safe x
My proposed chemotherapy did not take place because of Covid-19. I am rather left in limbo. I have bought a wig so I am all
Wigged up but nowhere to go! I changed down from The Marsden to Brighton as I didn’t think I would be able to do the train journey up to Sutton and now I’m not having treatment I really regret that decision. Are many others in my position with their chemo cancelled?
Treating teams are weighing up the risks and benefits of the different options for each individual person at the local level at that moment in time to help to ensure their safety. You can ask your team to explain further the reasons for not giving the chemotherapy, if that would be helpful for you.
If you would like to hear from other members of the forum about any changes to their treatment, you could post separately about it. That would help them to find it more easily and share their experiences.
If you'd like to talk anything through, please get in touch with our Support Service.
I am still NED 5 and a half years after de baulking and 6 months Chemo, thank each day, though suffering ( as are we all) during this present crisis.
Missing my grandkids terribly and have twins being born in July, so keeping busy with lots of tasks in the house and looking after hubby who is high risk.
Just want to wish everyone well, stay safe and I’m sure we will appear through the tunnel better people 😘
Thank you for letting us know how you are getting on.
I hope that you get to meet the new twins in your family as soon as is safely possible, isn't it lovely to have something so positive to look forward to?
Hi! It's a year today since my laparotomy, actually. I recently had polyps removed and the biopsies were clear. CA125 is stable for me. Follow up phonecall with the consultant next week. I've been feeling really anxious coming up to a year since the op, but at least the results are positive. Sending love and well wishes to you all! Xx
Thank you for letting us know how you're doing. It can be an anxious time after finishing treatment. I hope the phone call next week is helpful and you can get answers to any questions that you have.
If there's anything that we can help with, or if you'd like to talk anything through, please get in touch with our Support Service.
Hi I’m confused whether or not I’m considered ‘safe’ ish to go out for a walk? I’ve received the NHS letter saying I’m at high risk and to fully self isolate. However when I read through the criteria I’m not any of them. I had stage 3 OC last year and finished chemotherapy in August with two NED scans to date. So I don’t technically have active cancer atm.
I know they have got some of these letters wrong ie some very high risk people haven’t even received one?!
So I’m not sure if I’m still counted as immunosuppressed because chemo was within a year ago? Could you give me any advice please? Of course I’m staying in mostly anyway but would so love to get out for a walk with the dog if I’m not actually fully at high risk?!
Thank you for posting and encouraging us to ‘keep in touch’.
I’ve just logged on after a long break. My last chemo was in 2018 and scans have been clear since with a current CA123 of just 23😁👍
I am a bit confused as to my status though. I still have 3 monthly checks (2 monthly now due to ‘biliary sludge’!). The CA123 has gone up in 10s from being as low as 5. The oncologist and his registrar tell me that due to the high amount of seeding left after debulking “chemo won’t cure my cancer” - but scans are clear, so there is no evidence of disease! Unless the seeding seen at surgery is still counted as ‘evidence’, maybe? I’ve never received a satisfactory answer despite asking, it’s always “we go by the scan for treatment and that’s all we’re concerned with” or similar.
I’d also love to know why I have been plagued with joint pains, fatigue, abdominal discomfort, constipation and tinnitus ever since my last chemotherapy course (the tinnitus after Avastin).
No health professional seems willing to admit it was carboplatin, paclitaxol or Avastin so long ago that has triggered my symptoms, although a rheumatologist was happy to prescribe Celecoxib - and now Hydrochloroquine - without a diagnosis. Inflammation? Yes, of course, “but you do still have OC” (it’s not bad enough to be an autoimmune problem I’m told).
Confused? You bet!
I’m still doing tons better than many others on this site - I’m living life and loving it❤️
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Niraparib 
Low Grade Serous Cancer, Mets to Liver, Liver Biopsy, Update #1: Carcinoma
An idea for the forum and Ovacome support
Hello Lyndy. How are you ?
Just to acknowledge how knowledgeable you all are!
