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My Ovacome

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New here looking for help

Shinebright2020 profile image

Hello all, New to this community. Had a devastating news of being diagnosed with Ovarian Cancer in its advanced stages. Have done the debulking surgery and now recovering. Advised for chemotheraphy for further treatment. Anyone in this situation and have some positive news on this?

22 Replies

Welcome Shinebright2020 and sorry you are dealing with this as so many of us are.

I was diagnosed stage 4 in 2015, had chemo, surgery and then maintenance Avastin. My disease came back this year and I am going through chemo again but in the mean time I was very well, went back to work and on holidays etc.

Ovarian cancer does not really play by the rules but this can work to your advantage. The treatment now is even better than it was 5 years ago... so try to keep positive xx

Anntracy29 profile image
Anntracy29 in reply to Lyndy

Hello Sunbright, I am also very sorry you are having to go through this nightmare. I was diagnosed with stage 4 Ovarian & Peritoneal cancer in 2017, I am about to start third line chemotherapy. I can only say to you is yes of course you are frightened we all are but the things that helped me is my dogged determination and refusal to be beaten by this horrid nasty disease, I look forward, I make small achievable targets, I eat well and drink lots and above all else I will never give up or give in.

Whenever I respond to a post I say to look up the poem called The Oak Tree and when you are having a bit if a wobble read it again and again, it will inspire you and refuel your determination.

Good Luck to you Sunbright. X

Dubai18 profile image
Dubai18 in reply to Anntracy29

Hi Anntracy,

I have got hold of the Poem The Oak Tree, it is such a lovely poem. I will read it many times during my journey. Thank you for sharing. I start my first chemo Sept 14. And 2 further sessions every 3 weeks. Then they will reassess for surgery...

Hope all is going well for you.

Hugs xxx

That's lovely, like you will I read it very frequently I am trying to memorize it but I think my brain has been removed and replaced with cotton wool!!!

I expect to start third line chemotherapy at the end of October but as always I am ready for the fight. Good luck to you, with love. Xx

Hi, I was diagnosed with stage 3 advanced OC in oct 2007, still here despite being told I had a couple of years and have had 2 recurrences. Currently 7 years in remission. xx

Just finished my chemotherapy after similar diagnosis! It was rough, but after a 7 hour surgery and chemotherapy I’m cancer free! Dr removed my spleen and appendix and did some bowel repair. You will make it!!! Stay strong and never give up! Rest a LOT! ❤️ Best wishes during your journey

Welcome to the club no one really wants to join , this group has been a lifeline to me ,so much support and understanding.

I was diagnosed with stage three c February 2019 , had six cycles of chemo ,surgery then three more cycles of chemo, December 2019 told no evidence of disease , checks every three months ,so yes I would say have the chemo ,its tough but worth it ,talk to your team ,and everyone on here will be backing you . xx

See my reply to Sashay. Still here three years on after chemo and Avastin.

Wishing you a full recovery.

The support on this forum is amazing.

Stay strong 🤞🏻🤞🏻

Joy 😘

Diagnosed 2002 with stage 2c 18 years in remission. Sadly just returned. Please take treatment. Take each day as it comes. Eat healthily, walking helped me to feel better looking at nature etc. I am so sad it has recurred and i want more time but in those 18 years have done so much. Did find Loise Hay's book You can Heal Your Life which someone gave me, helped to keep me focused. My positive thoughts are with you.

Hello - sorry you've had to join our club, but you'll get lots of support and friendship from this group. I was diagnosed in January 2016, had surgery in February which confirmed Stage 3C. I then had 6 lots of chemo which I tolerated well. I recurred the following February, so back onto chemo for 6 more rounds, also well tolerated. Since then I've been on Niraparib and stable, though my CA125 levels have started creeping up lately, but I feel well and am busy and active and enjoying life and intend to do so for some time to come.

I hope you get on well with your chemo. Everyone reacts differently, so your experience won't be quite the same as any of ours, but there will always be someone who has had a similar experience who can help and advise you. x

Hi Shinebright and may you always live up to that name.

I was diagnosed in November 2019 and had debulking surgery in mid December which found stage 3c ovarian cancer. This was followed by 18 weeks of paclitaxel and carboplatin chemo, with Avastin introduced in week 7 as well. This treatment is not easy, especially with the long exhausting days as I had the ice cap as well. At the end of the 18 weeks my CT showed no sign of tumours and my CA125 had dropped dramatically and was within the normal range. I am now on Avastin only, every 3 weeks for 12 months, which will take me through to May 2021.

It is a rough ride but hang on for the journey as it is so worth it after that ghastly diagnosis to still be around and enjoy family and friends who have been so supportive and understanding. You really find out what is important to you when something like this happens. There were moments of doubt and a few tears along the way for me, but for the most part I followed the advice of my oncologist and nurses to the letter, and followed the road they put me on. Please listen to your medical team and if there is something that does not agree with you speak up. In the first few weeks I had trouble with the anti-nausea medication, as it actually made me nauseous, but my oncologist and chemo nurses found another drug that I tolerated well. None of us react in the same way and not necessarily how the text book says.

I wish you all the best on your journey and please know that you are not alone xx

Its a great journey. You will find how strong you are. Chemo ... is your ally. No alcohol. Research light fasting it works for me gets rid of side effects. Allso look into glutamine powder to control neurropathy

Science is on our side big hugs

Neona profile image
Neona in reply to Ruebacelle

I took L -glutamine and escaped neuropathy.

Lizzieanne profile image
Lizzieanne in reply to Neona

have developed neuropathy can you let me know which glutamine you took and where you bought. Thank you

Neona profile image
Neona in reply to Lizzieanne

I just bought a pack of L- glutamine online and did a bit of research online for quantity which unfortunately I can’t remember.Think it is mainly for prevention- sorry it was some time ago now. Try researching some US sites as it is commonly used there to prevent neuropathy whereas oncologist s here don’t seem to have heard of it.

Lizzieanne profile image
Lizzieanne in reply to Neona

Will do thankz

I have good news. There are a lot of us on here that had a later stage diagnoses and the op and chemo and we're still here to tell the tale. I was diagnosed in 2013 and hope to have many more years yet.

Best wishes to you and I wish you all the very best. Zena x

Hi Shinebright! Love your screen name. It's positive and uplifting. Please keep that attitude throughout treatment and you'll do just fine. We all here are in the same situation although in many, many different stages of treatment and after. I joined this group 5 years ago after my diagnosis of 3b Fallopian Tube Cancer that had spread to my abdomen. I am dealing with a small recurrence in a lymph node but it looks good that radiation treatments will take care of that. Please let us know how you're doing and ask away for anything you need to know. Not only am I still here but I am still asking for the advice and wisdom of the ladies here. Hugs, Jill

Dear all,

Thankyou for all your encouraging words. It really makes me feel much better. I had my kidney tests yesterday and due for blood tests and CT scans tomorrow before the Chemotheraphy cycle starts.

Hello Shinebright 2020, same here, I have been diagnosed stage 3/4 and they've told me just a few days ago that my chemo will start within 2 weeks, will have 3 sessions and then they will decide if surgery is an option. Since then first lump in my neck appeared I have more smaller lumps appear.

I just hope the chemo works and I suffer the least side effects.

It is a worrying time, but we have to stay strong. The ladies on this site are all so helpful and supportive. They will get us through it and we will come out on the other side and have a few more years if not many. We have life to look forward to and we are not giving up!

We are all in this together. Lots of hugs xxx

I am trying to research mortality rates if you do not take chemo and was diagnosed with Stage 3C High Grade Serus ovarian cancer. My mom insists on trying chemo but I do not think she will want to continue after the first round (I am a 3c breast cancer survivor and know her tolerance will be near zero). I can not find any statistics on how long she will survive if she refuses. Any place you can point me for a reference? She refuses to let us in her appointments, on a call, we know nothing more than this.

OvacomeSupport profile image
OvacomeSupportPartner in reply to LadyRM

Hello LadyRM

Thank you for your reply. As I mentioned in my reply to your post '3C High Grade Serous ovarian carcinoma with no chemo,' we ask that members not post survival statistics on this forum. This is so that anyone who doesn't want that information doesn't see it accidentally. The treating team are there to answer any questions .

You can find some statistics about ovarian cancer at cancerresearchuk.org/health..., although many of them are out of date.

We would ask that anyone replying to this not mention survival statistics.

Remember that no statistic can predict what will happen for an individual person.

If there's something that we can help with, or if it would help to talk anything through, please get in touch with our Support Service, which is open Monday-Friday, 10am-5pm on 0800 008 6054 or 07503 682 311 or at support@ovacome.org.uk. If you need support outside these times, you can call Macmillan Cancer Support on 0808 808 00 00.

Best wishes

Julia (Ovacome Support)

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