Hi all you lovely ladies. I do hope you are all as well as you can be. I just wanted to encourage you all by saying I've just come back from my 6 year oncology appointment and have been told I don't need to go any more unless I feel the need. My CA125 has gone up to 10 and as you know that's nothing to worry about. The trial will continue for 10 years. Not bad for Stage 3C.
I hope this shows it's possible ladies and my best wishes to you all. Zena xx
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ZenaJ
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Iโm upbeat and positive most of the time but every now and then I wonder if Iโm going to be okay. Chemo does mess with my brain a bit....2 down 4 to go. I hope Iโm NED at the end of it...
If I am totally honest I feel the same, I can't quite believe I have been this lucky and am getting to the stage where I think a recurrence is just round the corner! It's like waiting for an axe to fall! All part of the 'normal' for anyone with a cancer diagnosis I suppose. Do let us know how you get on! Last time on chemo I scanned NED after my third so you never know!v xx
No, I'm on no drugs. I think I've been very lucky. The trial was just to see if it made any difference having chemo weekly or 3 weekly. It turns out it didn't but at least they're looking into things. xx
Very well done, Zena - that is fantastic ๐พ๐พ๐พ. Sincerely hoping that you are cured of this hideous disease - and itโs very much looking like you are! Fabulous news - please keep us updated on how you are doing. You look fabulous and as if you are living life to the full - just how it should be, lots of love ๐, Mel xxx
Thanks Mel, I don't say much on here now. So many have left it was getting hard to cope with. I still look every day but haven't got much to say that could help anyone.
I do live every day, I'm always so busy enjoying the things I couldn't do when working plus I love a holiday. I wish I had more money so I could do more of them. I still moan when there are others so much worse off than me.
Thanks Solange. The only problem is I'm not sure I'd know if I needed to go back. I didn't have any symptoms the first time. It was pure luck it was found.
Zina. That's such good news. Mum was diagnosed at 3C too and after three lots of chemo she's been steady since June 17 and her CA125 is currently at 9. You must be so pleased. I'll share the news with mum too. Jane XX
Fabulous news! Thank you for sharing - I think it's so important for everyone to know the good stuff too. Here's to many, many more healthy and happy years for you. x
That is such great news! Very encouraging! I have to go back and look at your posts before I ask you a million questions.
I was diagnosed in 2015 stage 3 high grade serous. One recurrence in 2018 currently on Zejula. Did you have any recurrence in 7 yrs? My chemo nurse told me that once I recurred it will always come back. I thought that was so discouraging to hear. But, reading your great news, I believe thereโs always hope!
Thanks Marisa, I haven't had any recurrences but I've never heard anyone mention that once you've had one you'll get more. Why should that be the case, I wonder. I've never heard of Zejula but then I'd never heard of Avastin or BRCA until I read about it on here.
It just confirms what I always say, you don't know what need to know until you know about it.
Wish you all the best and let me know more about the recurrence if you find anything out, please. Zena xx
You make perfect sense. I truly love that you never had a recurrence because this truly proves that our disease isnโt a death sentence. I completely appreciate doctors being straightforward but I just wish they would let go of the statistics and put more hope into our hearts. I am going to ask the question during my next follow up and let you know what they say.
Excellent Zena, this makes hearts sing! Thanks for sharing this.
Because of my CRUK-UCL patient rep. role, I'm always trying to learn more, so do you mind telling me which type of OC was diagnosed and what your treatments have been and where you have been treated?
My original diagnosis was 10x8 cm mass plus secondary deposit on T2 W vertebral. My CA125 was 137. My tumour was stuck within my bowel and the cancer spread to bowel and abdomen. My notes say 'at least stage 3c, grade 3 (predominantly endometrioid but with papillary structures adenocarcinoma). TAH/BSO, omentectomy, pelvic and paraaortic lymphadenectomy, ureterolysis, bowel injury. '
I don't know if any of this makes any sense as I've taken it from the letter sent from the surgeon to my GP.
I was treated in Southend-on-Sea hospital, Essex, England. I had weekly Carboplaton and Paclitaxel.
My side effects are peripheral neuropathy (which everyone seems to get) plus I still get aches where I had the cannula and I swear I still have chemo brain.
Well that was a lot to read and may be completely useless to you. Let me know and I'll try to dig deeper.
I've no medical knowledge, except what I learned of my OC and the bits I'm learning from being a patient rep.
Your OC, from the medical jargon in the letter, sounds really invasive and widespread, so you have done brilliantly from weekly (dose-dense my oncologist called it when I had it six years ago too) Carbo-taxol, haven't you. So incredibly encouraging.
Mine has been two occurrences of clear cell with the second ocurrence removed - two tumours from close to my aorta and renal artery by surgery followed by the weekly carbo-taxol plus Avastin. I'm still NED too, six years since the last chemo finished.
Sounds like you're doing great Lesley. Long may it continue.
I probably looked up the meanings of some of the jargon but have since forgotten it. All I know is I had a tumour, stuck to and surrounded by my bowel and the cancer had spread to my tummy fatty tissue. I was lucky enough that my surgeon managed to save my bowel but the damage means I have to take daily laxatives (quite a few of them).
I did ask if she'd give me a tummy tuck at the same time (it was a joke). My tummy is still large and looks like I'm pregnant which I'm not happy about but then again everything could be so much worse.
Thanks DaisyMae, you have a lovely name also. I knew a Zena at school and there was another Zena on this forum a couple of years ago. I also have a cook book by Zena Skinner, a TV cook from years ago. There's a Christmas cake recipe titled Zena's Christmas cake so I have to make that (when I bother). There's a couple of actresses, Zena Walker and Zena Marshall. More than likely dead now. There's Xena the Warrior Princess. There was a tennis player Zina who played Wimbledon. She was American I think. I guess I notice them because the name doesn't crop up much.
As far as the blood goes I don't get nervous. I think I've had too many canulas over the years especially when I did paid drug trials. As far as the results are concerned I assume the worst and it's a nice surprise if it's normal. Once I even took a packed hospital bag assuming I'd be kept in. That sounda silly now. I'm sorry to say that I doubt I'll ever stop worrying that the cancer will return but I do have days when I forget I ever had it at all. It's mainly when I go to bed trying to get to sleep.
I do hope you are doing as well as possible and wish you all the best. Zena xx
Zena, it's hard to go down this cancer road. I find my comfort in Jesus and his word. It's truly my source. When I think of all his suffering in comparison mines nothing. As I look around I see so many people suffering it just breaks my heart. I don't know if I'll ever get used to this new normal . At least that's the term I hear a lot. I'm a Triple Negative Survivor. Hanging on tight..
As for your name... I love it. We have that in common. My 6th grade teachers first name was Zena Gibson. I very rarely run into another Zena.. I think I can count on one hand how many I've met.
Hi DaisyMae, I'm so pleased you have your faith. It's a gift I'm yet to receive. It must give you much comfort. We all have our cross to bare and there are so many others that are worse off than we are. We just do our best.
Zena, I know that you are going to co tune to do well. You sound like a strong wo.an, and no doubt have a strong support group. We are blessed to have goodDr's.
Hi Zena just wondered if you can answer me done questions as I'm not getting this trial thing .When you had your debulking operation and chemo did you then have a recurrence at some stage and then go on a the ICON trial for 18 weeks and your cancer has never returned?
Hi Win, no I went on the ICON trial before any treatment. They put me on the chemo every week part of the trial. The results came back that it didn't matter if you had chemo weekly or three weekly the outcome was more or less the same. I've been lucky enough to never have a recurrence. The longevity part of the trial must be on going.
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