My introduction.: Hi. New to all this, have... - My Ovacome

My Ovacome

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My introduction.

Talkingpicture profile image
29 Replies

Hi. New to all this, have been relying on my daughter to tell me things of here.I am 63 years old. And in April/May 2022 I was diagnosed with stage 3(high C ) ovarian cancer.

I have had 7 rounds of chemo and debulking surgery. I am due to meet with my consultant next week to talk about parp inhibitors.

My life seemed to have ended when I was diagnosed and everything changed. But, with massive support and a lot of family love I feel blessed and in a good place.

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29 Replies
Lyndy2 profile image
Lyndy2

Hello! Lovely to meet you… you will find lots of support here. You have taken the first step in posting and you’ll soon get the hang of it. Glad to hear you are doing well… many of us are on Parp inhibitors… so let us know if you want advice xx

Talkingpicture profile image
Talkingpicture in reply to Lyndy2

Thank you Lyndy. I was hoping for that xx

Tulips66 profile image
Tulips66

Hi, sorry you have had to join us on here but as Lyndy said any questions or worries you have there is always someone on here who can help & support you. I was diagnosed Jan 2019 stage 3 high grade & even though I recurred in Sept 2020 I am still here. I have just finished chemo in Nov for the second time & have just started on a parp inhibitor literally an hour ago so I cant give you any advice yet but there are lots of ladies on here who have been on one for a long time. My family & friends have been great but its still good to be able to come on here & chat to someone else who knows exactly what your going through. Best of luck with your treatment going forward & let me know how you are getting on

Talkingpicture profile image
Talkingpicture in reply to Tulips66

Thank you so much for taking the time to reply. I find out next week about the parp inhibitors, so will know more then and will have questions then. I hope you don't suffer badly with any side effects I will be keeping my fingers crossed for you.

Skyeplus profile image
Skyeplus

Hi, lovely to meet you. I don’t post a great deal, but I do read the posts and it really is a very helpful and supportive place. I am on a Parp inhibitor called Niraparib and so far so good. Ask and someone will answer. The Ovacome helpline and info is excellent x

Talkingpicture profile image
Talkingpicture in reply to Skyeplus

Good Morning Skyeplus. Thank you. I'm glad I came on here. I was a bit ignorant and didn't realise there were different parp inhibitors. Its good to know there is advice on here that will be of a great help to me xx

mrstadpole profile image
mrstadpole

Lovely to hear from you.A very helpful site and one that has given me lots of inspiration.Everyone on here understands what you are going through x

Talkingpicture profile image
Talkingpicture in reply to mrstadpole

Hi Mrs tadpole. Love the name. My daughter has been on here for a while and as we know the cancer affects more than just us. She has gained a lot of comfort and good advice, which she passed on to me. She kept telling me to join, I'm so glad I have xx

Ruebacelle profile image
Ruebacelle

Good news is that you were just diagnosed and thus can take advantage of all the latest research best of luck hugs from psris

Talkingpicture profile image
Talkingpicture in reply to Ruebacelle

Thank you for your best wishes. They are much appreciated 🤗💕

Riverflo profile image
Riverflo

Hi, welcome to the club 😊. I shared your experience upon diagnosis in Jan 2020. Thought I wouldn't live to see my birthday in September and couldn't comprehend this new version of life that I'd been handed.But it's opened my eyes to just how much I am loved and appreciated and in spite of the really crappy parts of the journey, there has been lots of fun and periods of good health including now.

I wish you well on your journey and please know that you are not on your own.

Love Martine xxx

Talkingpicture profile image
Talkingpicture in reply to Riverflo

Hi Martine. I understand totally what you are saying. I always thought if I was told I had cancer that I wouldn't be strong enough to cope with it. Its all the support you get that makes you stronger so I'm so very grateful. Thank you it's nice to know you feel the same 😊😊💕 xx

Jannibags profile image
Jannibags

❤️

Hi, and welcome to this helpful site. You will find there is much support on here from all of us. Donna xx

Talkingpicture profile image
Talkingpicture in reply to Pianoplayer731021

Thank you Donna. Even thought it's only been just over a day I have been on here I feel so comfortable already xxx

Pianoplayer731021 profile image
Pianoplayer731021 in reply to Talkingpicture

You’re very welcome! Happy that you joined us. 🥰👋

Summergold2 profile image
Summergold2

thank you for having the courage to take this first step. It is so much easier with the knowledge of all the wonderful ladies on here. As you know everyone is different in their choices and their disease. Hope they have done dna testing on you regarding Braca and other forms that can help with what comes next. Good luck and sorry you have joined the OC club but all of us are supportive of each other!🦋🦋🙏🙏

Talkingpicture profile image
Talkingpicture in reply to Summergold2

Hi Summergold. I have been lucky with my consultant he was on the brac gene testing. Turned out I have the braca2 gene and had a mammogram within 2 weeks of finding out. Also my daughters have been tested too. I have 3 daughters 2 have the braca 1 doesn't😒

Summergold2 profile image
Summergold2 in reply to Talkingpicture

they have lots of options that will work for you I am so sorry you have to go through this. Hang in there !

lesleysage profile image
lesleysage

Like everyone else, sorry we have to welcome you to this 'club' but given none of us had a choice to be dealt the card of ovarian cancer, we're a great bunch.

My 'offer' is much the same as I often share - remember Ovacome have loads of information and freephone helpline if you feel you are going down a blind alley. Lots of webinars and support groups if they are something you'd find helpful/supportive/useful as time evolves....hopefully, as I've unexpectedly found, you've years ahead of living with this 'thing'! Warmest wishes, L xx

Talkingpicture profile image
Talkingpicture in reply to lesleysage

Just read your amazing story. What a fabulous human being you are. Very inspirational 👏 xxx

Jingles6 profile image
Jingles6

I too made the same step as you and posted on this site and am so glad I did as there is always good advice and reassurance. I was diagnosed with OC stage 3 a 2021 and after a hysterectomy & six rounds of chemo my CA 125 was 8 and has been stable for over a year now. I am on Niraparib and not had too many side effects, which i can cope with as a small price to pay if it keeps me alive. I too would never have thought I would have got through being told I have cancer but being positive got me through how ever bad I felt. It is a comfort talking to people on this site as there is always someone who is going through exactly the same as you. I wish you luck starting your PARPS 💕

Jane

Talkingpicture profile image
Talkingpicture in reply to Jingles6

Thank you Jane. Coming on here has made me realise that even if my cancer returns its not the end of the world. While there is progress being made there is always hope.I had heard of ovarian cancer but had never heard any one mention anyone with it. It was surprising how many ladies do suffer from it but go on to live long lives 🙏

Doglover1410 profile image
Doglover1410

hi and welcome to the club none of us wanted to be in! I’ve been on Niraparib for 3.5 years barely any side effects. I took mine in the morning ( with the blessing of my onc) so I didn’t have to take them on an evening out. Sadly I’ve had to come off them as I recurred, but I hope you have a good run on them.

This is a fab site and everyone is lovely, definitely good to talk to others who ‘get it’.

Ali x

Talkingpicture profile image
Talkingpicture

Hi Ali. Thank you for letting me know. Hopefully find out soon which one I am on. I also realise the unfairness that some ladies don't get the choice depending on where they live. I can't believe that in the 21st century we are still defined by a postcode lottery xx

A1r1t profile image
A1r1t

Welcome to our exclusive club, Talking picture. I was diagnosed in 2020 grade 3 serious had debunking, chemo, parp ect. Now I'm on Tamoxifen for maintenance. MyCA125 is up and down but I've not reoccurred just yet but I try to just get on with life and as you've found out with these lovely ladies on here there are a lot who have lived with this disease for a very long time. I wish you lots of luck and love on your journey 🤗 ♥ xx.

Talkingpicture profile image
Talkingpicture

Hi A1r1t. Thank you for your good wishes. It is heartening to hear so many positive stories on here. So many brave ladies xxx

Alfiepop profile image
Alfiepop

Hello and welcome… sorry for the late reply but I tend to read the posts just once a week. Really useful information/support and inspiration shared here….

Talkingpicture profile image
Talkingpicture

Thank you Alfiepop for replying. How are you doing in yourself? xx

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