Hello fellow warriors

[Loverosie]

Ive just joined to reach out for support and hopefully offer mine to others battling this strange indiscriminate disease.

[Lily-Anne]

Hi

Welcome to the party 🎈

You’ve joined a great forum, everyone is lovely and full of info. How long have you had OC? Where are you in your treatment plan?

LA xx

[Loverosie in reply to Lily-Anne]

Thank you Lily, I'm being treated at Christies in Manchester. I had a borderline 1c three and a half years ago, full surgery no chemo needed but reccurence was march this year and now stage 4. Ive had 6 cycles of chemo and surgery after 4 to remove tumors on my stomach wall and right groin lymph node. Started avastin. Had a scan and get my results on tuesday. Thank you so much for asking x

[Lily-Anne in reply to Loverosie]

Similar to me in some ways. Stage 1C in 2012. Recurred 2015 and 2017. Now upgraded to stage 4? Non-committal from oncology.

Good luck with your results do keep us posted

Xx

[Loverosie in reply to Lily-Anne]

Will do Lily, thanks, i already feel not so alone xxx

[Hidden in reply to Lily-Anne]

Thanks for sharing this. I had first diagnosis in 2015. Reoccurrence last month. Have BRCA 1. On chemo now. It’s really reassuring for me to hear about people who had an earlier diagnosis than me and two reoccurrences. I was starting to wonder if people survive reoccurrences.

[Lily-Anne in reply to Hidden]

Oh you can bounce across recurrences for years. It’s the worry that gets us down

So enjoy every moment

LA xx

[Chickysha in reply to Lily-Anne]

You just hit the nail on the head! XX

[Hidden in reply to Loverosie]

I am also stage 4 and had 4 cycles of chemo then surgery-two more cycles to go, then 1 year of Avastin. I have had a post operative CT scan and get the results on Wednesday. Here's hoping we are both NED! Good Luck!! Lyn x

[Loverosie in reply to Hidden]

Flipping heck! Good luck too, I'll post my result xxx

[Petrolhead]

Hi and welcome. I am also one of the “mucinous “ ladies. A lovely phrase don’t you think. Lots of people to share with here who understand. As you are new it may be worth looking in the search box for stuff you are interested in. Lots of threads about all sorts of things.

Fay

[Loverosie in reply to Petrolhead]

Thsnks Fay, and yes its a beautiful term isn't it hahaha! Your very kind thanks x

[LittleSan]

Welcome to the group. I've had advanced OC for over 7 years. Am battled scarred but still here and plan to be around a lot longer! You'll find great support and sage advice on here. Xx

[Loverosie in reply to LittleSan]

Thank you, thats amazing! I was told three years in march! I'm hoping to do better than that x

[LittleSan in reply to Loverosie]

I was told that they keep 'ladies in your position' going for around 3 years (I was asking to weigh up options in a clinical trial). That's 4 years ago and although I'm on treatment for another recurrence, I'm feeling positive that I've got a while left in me yet. You are an individual and they can only quote for statistics not individuals.

I'm treated at the Christie too. Xx

[Hidden in reply to Loverosie]

Who told you you only have 3 years! they cant possibly know for sure, we are not a statistic and are all different and respond to treatment differently, ignore them and fight the best fight you have. xx

[Loverosie in reply to Hidden]

Thank you Lyn. It was my oncologist Dr Hasan at Christies. I did ask for the prognosis because my husband was in complete denial, i felt he needed to hear it to accept our situation. I already had an idea because they did biopsies after my scan and i heard the radiologist say "that's the peritoneal wall". I googled it as soon as i got back to the ward and found that it is always stage 3/4 if it is there, and they'd taken biopsies of my lymph node. My Mum was with me but i couldn't tell her. I was devastated and cried but didnt tell her why. I thought just wait until the results which i did. My gynecologist rang me a week later. This was march this year. He did say that because I'm young they are hoping I'll do better than three. Xxx

[Hidden in reply to Loverosie]

Of course you will do better than 3 years onward and upward. xx

[Alifit]

Hi! This forum has been a life saver for me - so much wisdom and support.

None of us really want to be here, but there is no better place than one where people have been through similar experiences.

Ali x

[DianesK]

Welcome on board

This is an amazing forum, everyone is so lovely and helpful.

We all don’t want to be here but it’s like another lifeline.

Take care

Di x 🌻

[Hidden]

Welcome I've not been diagnosed just waiting for results of stuff but this place has been great .

[Lyndy]

Welcome...this group is a brilliant source of support...whether you have a specific question or just need to sound off! x

[Solange]

Glad you've joined us! I was recommended to join but dithered for three years before I did. I think I was afraid of what I might read and also, I'm not very computer savvy. So pleased I did pluck up courage. Hope you'll feel the same.

Best wishes, Solange 😊, a twelve year survivor this month.👏🍾

[Lindaura]

Dear Rosie,

I have just read your story and cannot understand how you could get to Stage 4 without anyone noticing. That’s just not fair, after being told you did not need further treatment 3 years ago!

You are quite young and there should be lots of options available to you now.

Where are you located?

What is your treatment plan?

Have you started it?

Please let us know more details and those with similar cancers can bring you up to speed.

I wish you the best of luck and welcome you to our helpful site.

Hugs,

Laura

[Loverosie in reply to Lindaura]

Hi Laura, thank you for your reply. I'm in Manchester tx at Christies. I've had 6 cycles of chemotherapy, after 4 i had debulking surgery and right grion lymph node removed. I'm now on avastin for a year i believe. I had a scan two weeks ago and get my results on Tuesday. I'm praying for remission but readying myself in case ive not managed it. I've booked Tenerife for Christmas and I'm not cooking dinner! Lol! Best wishes Jane

[Lindaura in reply to Loverosie]

You sound like you are feeling pretty well, all things considered! I hope your scan results are all clear.

Kind regards,

Laura

[Seasun36-uk]

Hi Rosie(?),

Welcome to this supportive forum.

So sorry to read your story. Many of us are (were?) Stage 3 or 4.

There are many up & coming new treatments available.

There is always the option of a second opinion, as you will know, as a nurse.

The Marsden in London & The Christie in Manchester seem to be two of the pioneers in OC treatment & there is an excellent female surgeon at the Hammersmith who will operate when others won’t- Christina Fotopoulou (I think I’ve spelt it correctly!).

Let us know how you get on,

Linda xx 🌼🌻🌻🌼

[Loverosie in reply to Seasun36-uk]

Thanks Linda your very kind xxx

[Hidden]

Welcome, I joined last year following my diagnosis and have received amazing support from our beautiful Teal ladies. No question is stupid, no emotion is over the top. You will cry & laugh with us all and hopefully feel less isolated 💞

[Loverosie in reply to Hidden]

Thank you Scotty x

[Hidden]

Hello and welcome to this lovely site. I joined in May this year and what a help and support everyone has been, It really is wonderful being able to chat to ladies who totally understand, I certainly felt less isolated and on here a trouble shared truly is a trouble halved. Best Wishes Lyn x

[Loverosie in reply to Hidden]

Thank you Lyn, I've been feeling a bit lonely but im sure the site will help xxx

[Cropcrop]

Hi, welcome to our fab gang full of lovely and informative ladies and some gents too. Ask away and we’ll answer anything we possibly can and if we can’t our lovely admin ladies will have the answer for you. ❤️Xx Jane

[izzybruce]

I was diagnosed stage 1c the same as you,this is a lovely site with lots of support,and information xxx

[Coldethyl]

Welcome and hope you find the support you need here - I put off joining for a long time as sometimes you just need to buty head in sand but what I’ve loved about the forum is amongst the sadness there’s so much understanding and caring of one another x

[Shortie38]

Wecome you will get a lot of support here and lots of good advice,x

[Nicky100]

Hello ❤️

Thank you for your offer of help. That’s a lovely thing to offer people. This is such an snacibg community of ladies.

I am here to offer help if you need it too.

Nicky x

[Loverosie in reply to Nicky100]

Thank yon Nicky

[Cheryl4677]

Sorry if you get an unfinished post. I’ve twice started a post and halfway through it has disappeared. No idea where to find it now.

Hello. You will find help and support from those on this site. There is a wealth of experience and knowledge from those who’ve ‘been there’. You will see news that we wish was not the case but I think you also will be amazed at the strength and resilience shown and the positive vibes that come through. Good luck in your journey. Cheryl.

[Loverosie in reply to Cheryl4677]

Thanks Cheryl, I'm also not finding the site easy to navigate but I'm hoping it's just because im not use to it. Xxx

[harpist_UK]

Welcome to the forum and so sorry you had a recurrence. I'm a big fan of Avastin so hope it keeps the beast at bay for you. I had a pretty normal year on it 2016-2017. I've been going 3 years at stage 3C and have been treated at the Christie since June this year. Usually I'm there at the Thursday clinics. Wishing you all the best x

[Maxjor]

Hello From New York. We love this forum over the pond too--so much info to share--sometimes quite different from country to country and getting others' perspective has been invaluable. I was dx Stage IV HGS in July of 2016 and after Frontline, one relapse, one failed immunotherapy and another 6 rounds of chemo, I went on a PARP and am doing well on it (almost 7 months and counting!) Here's hoping the Avastin does great by you! ox Judy

[Loverosie in reply to Maxjor]

Thank you so much for your input! I wondered how do you manage financially in the US? I am a nhs nurse and I'm so greatful to our nhs, do you have private health care insurance? I know avastin is incredibly expensive here and you have to meet certain criteria to be funded for it. Sending kindest regards to you over the pond xxx

[Maxjor in reply to Loverosie]

Here, its all private insurance until you hit 65 yrs old or you have financial challenges and cannot afford insurance (which has to be proven with tax returns, etc.). Then the government kicks in. And each private insurance is different and you have to take the one your employers have selected if you work for a company. I own my company and selected the best one I knew--which covers all meds I have needed close to 100%. My PARPs here cost $15,000/U.S. per month and I pay zero. Once on the government plan (I just turned 65) I am supposed to pay $2,300 U.S. per month co-pay for the PARP. But my husband still works, has private insurance and they pay some of the $2,300 for me as his spouse on his plan. So complicated! But benefits are good with cancer drugs. oxox

[delia2]

Welcome! I’m still a newcomer here but I can’t Hugo a day without reading it. It offers such warmth, advice, support and hope. I hope you fare well in the next part of your journey. Xoxo

[kat98116]

Welcome from Seattle USA. Glad you've joined us, and sorry you have to! As previously stated there are many of us from the US and other countries as well on this forum receiving love and support from all over the world! You asked about Avastin. It is one of the drugs I'm currently on. I'm 65 and on Medicare here in the US, and it is covered as part of that system, which most people are on when they reach 65. Prior to that Avastin was covered by my private insurance plan. I have never paid a penny for it.....other than exorbitant monthly insurance premiums that is!

[Jo-Jo1-UK]

Hi Jane, welcome to the forum. As you can see from all of the replies, there are lots of ladies on here ready to offer support and friendly advice. I’m so sorry to read your situation, but glad your under The Christie, keeping everything crossed they can help you. Jo xx

[Loverosie in reply to Jo-Jo1-UK]

I'm astounded by all you lovely ladies Jo. It's life affirming to know there are so many kind hearts out there suffering this illness but still willing to help and share experiences. Seriously, i was feeling quite isolated emotionally because i try to sheild my family from the upset i sometimes feel but now i have found a place of love and safety for this jurney. I'm so greatful Jo xxxx

[lynn6156]

Hi, a wave from another mucinous lady here.

So sorry to read your story - you'd have thought they could have seen something on a scan before it got to this - although God knows I've had a battle to get a scan or a blood test done!

Anyway - onwards and upwards eh! Fingers crossed you've had better news. What about looking at genetic testing? they're identifying faulty genes in the mucinous group all the time. I'm really hopeful this is the way we'll be going in the (hopefully near) future.

This forum is so brilliant! It's a place where there is always someone who can help/discuss, be it symptoms or side effects or ideas. And also a good place where you can come and have a rant and say stuff you might not want to say to friends, and we'll be here and understand.

Lynn

x

[Loverosie in reply to lynn6156]

Thank you Lynn, i was never re scanned during my follow up. They just were not expecting it to come back. I've just found out that in america the only mucinous tumours that are not given chemo are 1A/1B, 1C are given chemo. Anyway as you say onwards and upwards. Avastin tomorrow early so good night and god bless xxx

[Hidden]

Sophie Sabbage author of ‘The Cancer Whisperer’ says don’t believe in statistics and I believe she is right doctors quote time frames to us purely from statistical data

“Statistics are indicators, NOT inevitabilities”