looking for positive stories….

[Laz66]

Hi, following on from my last post I wondered if anyones prognosis has been wrong? I am not sure our moderators will allow my post but I am in a sad hole.. My chemo ( 3rd line carbo then cisplatin and Gemcitabine) has been stopped after 3 treatments due to toxicity. I was really unwell on it . Ct shows tumour reduction in all abdo/ pelvic areas. Ca 125 has come down from over 1000 to 420. So not disease free and not NED. Worry is my lungs now as new node and “ nodularity” in both lungs. Advised 3 months off chemo then restart as cancer will likely “ misbehave “ next year. I asked about prognosis and onc said 1 or maybe 2 years. I wished I hadn’t asked and cannot get this out of my head. I am seeing someone for help with this but wonder who has been told this and living beyond predicted expiry date😕. Thanks x

[candyapplegrey]

Hi, sorry to hear about your prognosis. I am NED at mo but have been told cancer 80% likely to return. Not good to hear. I have already had one recurrence. I am sure there are plenty of ladies living well beyond their 'expiry date' on this site and they will soon write. The doctors don't know everything. There are always new trials as well. Ovacome may know more. It's just a one day at a time thing. I am taking strange supplements that have worked on some cancers although not yet trialled or accepted with OC.

In the meantime. When your post appears, others with similar titles appear as 'related posts' on the righthand side. Lots of people in same boat asking same questions. You could look at the answers they received.

Love, hugs and prayers. xx

[Laz66 in reply to candyapplegrey]

Thanks for reply. What supplements are you taking please? X

[candyapplegrey in reply to Laz66]

I am taking Fenbendazole (cleared with oncologist), high-dose Vit C, sodium bicarb, - originally took liquid zeolite, CBD oil, etc too as per Joe Tippens Protocol.

[Elena_Ukr in reply to candyapplegrey]

So oncologist is ok with you taking Fenbendazole? That’s great! Where can I find Joe’s protocol, please? Wish you hundred years in remission!

[candyapplegrey in reply to Elena_Ukr]

Ok. Sorry for delay. I haven't been online. [Please direct message me for details] Good luck with it all! xx

* [] indicates edit by moderator

[Lucylockpocket]

Good morning,

I am on my 6th line chemo. My consultant would not give me a timeframe as he said everyone is different and it’s difficult to be accurate. He also said I will never have an all clear or any more ops. I had a huge op in Dec 2019. Have had chemo almost back to back since then. It’s keeping it at bay. My CA125 this year has been almost 5000!! It was reduced by almost 2000 after my first treatment but then I had neutropenic sepsis and was in hospital for a couple of weeks. My dose was reduced and I am now half way through and not feeling as bad but my CA125 is climbing again. I enjoy each day as it comes and try not to think about “how long I have left” . I have great support from Macmillan. I am heartened by stories of ladies who have been living with OC for more than 4 years and those who are on trials. Good luck. Hope you get support to find the strength to stay positive. 😊

[Laz66 in reply to Lucylockpocket]

Thanks for replying. I am nearly 5 years now. Trying to plan stuff in near future only for now. Xx

[Katmal-UK]

Hi, I’m sorry to read your post. I was diagnosed 3B HGS OC BRAC2 in October 2017 and told I had ‘a couple of years’. I have 2 recurrences, a grade 3 anaphylactic shock and been on 3 trial drugs (still on 3rd) and currently 10 years 2 months NED. Have you asked for a second opinion or whether there are any trials you may be eligible for? I wish you well. Kathy xx

[Laz66 in reply to Katmal-UK]

Hi, thanks for replying. Amazing for you. I have had a couple of second opinions on this journey. Onc has mentioned trials and his future chemo plans. I have had a look on the appropriate site and think as am HGS but braca/ HRD neg none currently recruiting. Xx

[SopSinger]

No-one has a crystal ball, so there are many ladies out there living well beyond their expiry date. My inspiration was the lady in the bed opposite me on my first hospital admission (emergency admission that got me diagnosed). She'd lived 36 years after being told she had 6 months, and was still going strong 2 or 3 years later. We drifted out of touch after a bit. Definitely agree that you can ask for a second opinion and/or clinical trials.

[Laz66 in reply to SopSinger]

Thanks for reply. Lots of hopeful examples xx

[lesleysage]

Hello Laz66, my voice can add nothing more to the experience of others above as I share their feelings of 'no crystal balls' and the feelings of receiving a poor prognosis and actually life goes way beyond it. I am one of those very lucky ones.

I think Ovacome used to run a Support Group for those of us feeling we wanted to share, listen to, and support each other at such uncertain times. Maybe the Support Team on 0800 008 7054 can be of use on this and possible trials/or yet another 'second'/third/fourth! opinion?

In the meantime, keep taking care of yourself and those who love you too. xx

[OvacomeSupport Partner My Ovacome Team in reply to lesleysage]

Good morning everyone

As Lesley mentions above, Ovacome offer a range of different support groups throughout the month that provide an opportunity to speak with others in similar circumstances, ask questions and share experiences. More details about all of our support groups, workshops and events can be found here on our website: ovacome.org.uk/Pages/Events... . We warmly welcome new members, please don't hesitate to get in touch if you have any questions about getting involved.

We also have information about getting a second opinion here: ovacome.org.uk/getting-a-se... - as well as guidance about clinical trials here: ovacome.org.uk/clinical-tri... .

The Ovacome support team are here Monday - Friday, 10am - 5pm, should anyone ever wish to talk things through. You can message us here on the forum, email [e-mail] or give us a call on 0800 008 7054.

Best wishes

Annie - Ovacome Support

[Tealgirl7]

I was diagnosed almost 18 years ago stage 4 high grade serous carcinoma. My CA 125 was over 4,000. I have never been disease-free. I was given two years by my first oncologist. I said could I live longer and she said be my first. I am now on a trial with a parp inhibitor and avastin. You can do it. Try to stay as positive as you can. Sending you good vibes

[Laz66 in reply to Tealgirl7]

Gosh, amazing… thanks so much for this. I guess you must be braca/ hrd positive then? I have had niraparib and letrozole, neither helped. Hope you continue for at least another 18 years! X

[Tealgirl7]

No I am not braca positive. I started taking Niraparib 18 months ago and I was showing signs of progression so that is why I'm on a study right now that adds avastin to the mix. I'm sitting waiting for my 40 something scan. It's still stresses me but you do learn to live with it after this long.

[Laz66 in reply to Tealgirl7]

Thanks. Do you know your HRD status? I see you are in Canada and am not aware of trials for this in UK. I wasn’t given Avastin after frontline as it was only available to those with stage 3 or 4 and I was stage 2. Good luck on your scan 🤞🤞x

[Tealgirl7 in reply to Laz66]

I haven't got the results of my scan yet. I will check about the hrd status. I have had extensive genetic testing and I'm involved in a research trial regarding this. I do have a couple of aberrations but it is so complicated to understand..

[Nicky100]

The answer is yes!! There are plenty of stories that are much more positive than expected. Mine included.

Have you read the RADICAL REMISSION or looked at the website? It has 1000+ incredible stories of people that defied the odds and did brilliantly, it’s worth a look!

Much love,

Nicky x