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My first post. OC stage 4B

Hello everyone!

I have been reading your posts and gathering information (about ovarian cancer, not about the members on the site. Don't worry - I'm not a spy!) for a few days, and thought the polite next step would be to introduce myself. I'm not a native English speaker, so if anything is unclear, don't be afraid to ask what I actually meant!

I'm 42 years old and was diagnosed very recently. My doctors are using both the terms fallopian tube cancer and ovarian cancer about my illness, but it apparently started in the fallopian tubes, and by the the time I started having symptoms and was diagnosed, it had sadly metastasized to my lymph nodes, omentum and liver. So it is stage 4B. I just started chemotherapy and am hoping that will shrink the sodding thing down enough for me to have surgery.

I am feeling pretty alone in this at the moment and am so happy to have found this site and you lovely ladies.

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Welcome to the site no-one would chose to join! You'll find lots of kind knowledgeable people here.

I too had chemo first in order to shrink the tumour to make an operation feasible, a lot of us do and go on to have successful surgery. Hope you're coping well with the chemo side-effects. At times it can see really heavy going but you realise it is really do-able when you get to the end.

Good luck!

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Thank you!

My first lot of chemo went pretty well. I think the anti-nausea meds was giving me more trouble than the carboplatin to be honest. The effects were supposed to last for three days, and by the end of those three days my stomach cramps had ceased immensely and I could finally walk upright. So I might give them a pass next time

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Talk to your team before stopping as they will probably prescribe different anti-nausea meds. It's easier to treat the nausea as if vomiting starts the meds won't stay down and I think you then you need to be hospitalised for IV meds.

Glad that apart from stomach cramps things have gone well.

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Thanks, that's great advice!

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Hi Kittycat , I am another who had three lots of chemo then the op and then the remaining chemo . You will always find someone on here who can answer your questions or offer advice , we might not be here by choice but we are in the right place for help, reassurance and support , welcome !. Julia xxx

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Thank you, Julia. It's so nice to be able to talk to someone who is going through or has gone through the same thing. Everyone else gets a look of absolute horror at the mere mention of ovarian cancer.

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Welcome,

I too recently joined this group and have found all the lovely ladies so knowledgeable and supportive. To be honest reading posts on here has stopped me from going mad at times.

Sorry you have had to join us but here is a place where you are not alone!

Lizziebee

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Nice to meet you, Lizziebee. I have already learnt so much from reading some of the posts. So happy to have found this site.

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Welcome to the mad house and I'm so sorry you find yourself here. We have sad days but we also have a lot of laughs, so hang on in there with us and prepare for the journey of a lifetime. We all hold hands and go for it. There are many survivors and they are still journeying with us and keeping us strong and positive when we need it, which is wonderful.

I cannot have surgery - also 4B - as I'm in France and they take a different attitude to surgery here. When there's a small chance that it will make things worse then they leave us alone to hopefully let the drugs do their work. I'm a year up the road so far, good and bad, currently in hospital with a blockage but on the whole positive and calm. Life is for living while we have it so try to enjoy as much of it as you can. Have your black days and your angry days but don't be afraid to have good times too. Chemo isn't easy for all of us and others sail through. We are all different.

The best advice any of the girls will give you is to stay away from Dr Google. Trust only your medical team - and us of course. Good luck xx

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Thank you, what a nice welcome! You all seem like such a lovely lot.

I had no idea about the attitude to surgery being different in France. I assumed things were done pretty much the same all over Europe. But I'm a clueless Scandinavian who hadn't given ovarian cancer much thought before my diagnosis if I'm being honest.

I disappeared down a Google hole for the first few days after finding out, but I dug my way out, and I'm not going back there!

Hope you feel better and get out of hospital soon.

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Thank you. Did you know that the best place to get OC, that's if you wanted a best place, is Sweden? They have the highest life expectancy I believe. Don't know where I read that though.

Keep strong.

Love and hugs xxx

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I had no idea! I'm in Norway, but funnily enough two of the three oncologists on my team are from Sweden.

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Welcome to the party 🎊 🎈 🎉 madhouse, support network and anything else that comes to mind... as our lovelies have said we’re a friendly bunch, we love this rollercoaster 🎢 although we don’t wanna be on it, to be honest I wouldn’t change it as I’ve met so many fabulous ladies on here, some no longer with us, others like Kryssy makes us laugh with her rants 😂 to be honest half the stuff we read here could be a right comedy script. I care for someone with OC there are plenty of posts here and if you search you’ll be able to find many positive stories from lots of people. My special person was told 6 month with chemo that was 3 and a half years ago she’s 60 on Saturday, so she’s beaten her odds by loads. Don’t play with Dr Google he’s old and out of date his stats aren’t good, but ask those who are here to tell the tale and post anything we’ll always do our best to answer, but please don’t feel alone, you’re not. Xxx

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Thank you for the warm welcome. How wonderful to hear about your special person!

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Hello Kittycat,

I presume you like cats? I have a lovely tabby cat who has helped me many days on this journey, especially after chemo (curled up beside me).

I was diagnosed Stage 4 high grade serous (the most common type) in March 17 & so began the journey you are starting now.

Welcome to this supportive forum. You will find so much knowledge & support here....just ask away.

All good wishes for your chemo and operation xoxo

Linda 🌺 🐱

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Thank you! Cats are the world's best anti-depressant, aren't they? Yours sounds lovely. I am sadly catless at the moment, but hopefully not for long.

The oncologists think my cancer is high grade serous as well, but they can't be sure. Both biopsies were inconclusive, which worries me a bit.

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Hi again,

My biopsies weren’t that clear either & I think it was only confirmed after the operation tissue (tumour) pathology. Lxx

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Hi Kittycat76!

Welcome to this fabulous forum! We were all new once and I think everyone will agree that the kindness, support and breadth of knowledge of the members here is invaluable. No matter how supportive our loved ones are, they can’t know how this feels unless they have been through it too.

Ignore Dr Google, but always ask for advice here and talk to your team armed with questions you have.

One of the most frustrating things about chemo is the side effects of the drugs you have to take to counter the side effects of the chemo - I have to take laxatives to counteract the constipation that I get from the drugs which stop me feeling sick after chemo! There are many different anti-sickness drugs - your medical team should be able to find one that suits you better.

Best wishes to you, Ali x

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Thank you, Ali. I've been looking into the side effects of the three most commonly prescribed anti-sickness drugs for after chemo, and they all have constipation pretty high on the list. It's really frustrating.

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I was initially prescribed a drug called Emend which I took alongside Ondansetron which is renowned for causing constipation. For my last two chemos I have had a new drug called Akynzeo which is a combination of two drugs similar to the Emend and Ondansetron. I only take one tablet an hour before chemo - by all accounts the drug lasts for 3-5 days. I have never vomited, but this drug combination seems to keep the nausea at bay.

Do mention these to your team - they should be doing their best to minimised your side effects.

Best wishes, Ali x

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I think it might have been Akynzeo that gave me stomach cramps, as the drug I was given was supposed to last for at least three days. I'm not a hundred percent sure though, so I'll have to look into it. The reason I don't know, is that I was originally prescribed two other anti nausea drugs, but the oncologist decided to change them right before my treatment. I guess there's always some trial and error before finding the right drug!

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Hi, I'm sorry you have to be here but you have found a supportive community, I was also diagnosed using both terms OC and Fallopian stage 3 b, I've been on here now for 4 years and found when ever I've needed advice or just encouragement the ladies have been there for me.

I agree with seeing your team about trying a different nausea meds,I hope you can get that sorted out Take care Lorraine xx

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Thank you, Lorraine. I am so glad I found this community. I am already feeling better, just from knowing there are people who understand what I'm going through

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Hi kitty cat

My sister was diagnosed 4a in january. She had three rounds of carbo/taxol/avastin then major surgery a full hysterictomy, removal of the omentum and perineum. The chemo killed off or shrunk the primary as well as the spreading. She had 5 more chemos post surgery and was declared cancer free/no evidence of disease in july. I share this with you because there is so much that can be done. She was told as well the stats are out of date.

I am so very sorry that you received this challenging diagnosis. This site these women are all amazing and supportive.

My sister did well with the chemo and ate lots of protein and drank lots of water. You want to flush it out of your system.

I wish you all the best from the states. Xoxo nancy

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Thanks so much, Nancy. I am so happy to hear your sister is doing well! Great advice about drinking lots of water. I did try to after chemo, but I should probably drink even more.

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Hi kitty cat I presume that you are in europe. Another good thing to drink is a protein drink carried here in US, not sure over there, called boost and also ensure. She was told not to order any salads while eating out because not sure how well the produce has been cleaned. Veggie juice also very good to eat. She would have 2 down days but found that moving around really helped. Xoxo nancy

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Yes, I'm in Norway. Thank you for the tips. Eating out is so expensive here that I might not do it at all until I'm feeling better! xx

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Hi Kittycat! I can only echo what all the marvelous ladies have told you. One day at a time. One step at a time. Google knows nothing about individual cases. We are all different in how this cancer affects us, how the chemo works and how long at any stage we have to live. Talk to your doc. Ask us anything. Trust me, you will find loving advice.

I also have Fallopian Tube cancer that spread to my peritoneum and Omentum. The tumor in the Fallopian tube wasn't found til surgery. So the docs thought I had PPC. I am stage 3b.. 3 years out, doing great.. and my biggest piece of advice is to drink lots of water, keep the bowels moving and take the anti nausea meds. Hugs, Jill

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Thank you, Jill. I'm very happy you're doing so well!

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Hi Kittycat - as you will see there's a lot of encouragement and sometimes a bit of humour to be found on here, as well as lots of good advice. None of us chose this bummer of a disease, but we make the best of it, and some of us do some pretty amazing things trying to get on with our lives as best as possible. We become experts in seizing the good days! I am 3C, diagnosed 3 years ago and still going with the help of my doctors. I've never had surgery as they thought it more risk than benefit to me; so even without the op you can be ok. If you get the chance of the maintenance drug Avasatin (bevacizumab) take it - I went skiing on that one! Wishing you all the best for the road ahead.

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Thank you. You all seem so lovely. My oncologist has actually mentioned Avastin as a possibility for later on, so I am glad to hear it's working so well.

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Dear Kitty,

I'm so sorry you have been diagnosed with Stage 4b ovarian cancer. Your diagnosis is similar to my own back in 1999 when I was diagnosed with stage 1V ovarian cancer complete with massive pulmonary embolisms at the age of 53 and my youngest son still in high school. Because of the blood clots I had to have 3 chemo's before surgery and 6 more after surgery. All went very well for me and I was pronounced "disease free" after the 5th post surgery chemo (Ca 125 was down to 17 from an initial reading of 9800) but I had the last chemo anyway for added assurance.

Next month I will be celebrating 19 years in remission since initial treatment ended, so I'm passing this good news along to offer hope and light to you on your own unique healing journey, because you have to know that some women do indeed survive this disease despite some gloomy statistics.

Hang in there Kitty and don't feel alone when there are many women on this forum who are in the same place as you and will be at your side (in thought and prayer) every step of the way and answering any questions you may wish to ask. Yes, it is all very scary but the biggest thing is to believe in yourself and keep putting one step in front of the other.

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So fantastic to read your post! It’s brilliant to know that there are ladies who have had such a positive response and are still here nearly twenty years on.

Your post has given me hope.. Thank you

Joy xxx

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Here here to that !! Sandylight must be a veteran by now - even longer than Katmal. Well done xx

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Thank you so much. I am so incredibly happy for you, and so grateful that you still take the time to give hope and light to others. For the first few days after diagnosis (and even while waiting in hospital), I was scouring the internet for stories like yours. There aren't many, so this is such a special gift.

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Hi , what treatment have you had or still having, great news xx

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I had 3 Carbo and Taxol, followed by surgery, then 6 more Carbo and Taxol to finish. I was in remission after first line treatment and (thankfully) have remained so since.

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A shining example to us all but what's even more special is that you are still here to support the rest of us. You could have just gone away and got on with life. Thank you for staying and helping us. Sending a cyber award...... xxxxx

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That’s fantastic to hear and thank you for posting it is a tremendous boost to hear your story.

Juliax

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Thank you for taking the time to come and post! This means so much to us!

Congratulations and continued good health.

XXOO

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Hello Kittycat76 and welcome to this forum. I am a newbie also being diagnosed in May this year, with OC my first CT Scan said "indicative with stage IV cancer. I have had 4 cycles of Chemo and it has managed to bring my CA125 down from 1486 to 85 so worth doing! I am awaiting a date for debulking surgery then will have 2 more cycles of chemo.

Diagnosis of Gynaecological cancer is very isolating and very scary, but you will never really be alone as on hear you will find lots of extremely well informed ladies that will be only to willing to answer any questions or just offer support as you begin this horrendous journey. Any time you need a chat we will be here for you. Take Care and good luck with the Chemo and Operation. Lyn xx

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Thanks so much, and lots of luck to you too! Have you had a CT scan after chemo? I was told I would need one before surgery.

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Yes I think the CT scan is pretty standard so they can see what has shrunk, I also had to have a full blood count, and a surgical pre-assessment. After the chemo and CT scan they then decided I was only a Grade 3, brilliant!

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How wonderful! Best of luck with your surgery!

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Hello and welcome to the club nobody wants to be in but are so grateful to be in it.

You get so much useful information. Useful when you meet your oncologist and can question what is on offer.

Good luck and let us know how you are doing.

Kathy x

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Thank you, Kathy.

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Hello Kittycat

This site is amazing at making you realise you aren’t alone, offering invaluable advice but also providing such support!

I was 42 when diagnosed in Feb this year... and also stage 4...it’s a bit of a bloody shock isn’t it!! I have had a birthday since then so 43 now. I’ve never been told so much that I’m young since being diagnosed which is probably not great but I take it in a lovely shiny I’m must just look so young way (can you see I’m getting through this by burying my head in the sand 😘😂).

Anyway I had chemo then full debulking surgery. Now on avastin for a year. It’s all gone positively for me and I tell you this like previous posters to show you there’s a way forward.

Glad the first set of chemo went well. I’m sure your team can sort some better anti nausea tablets for you x

Any questions just ask

Katherine XX

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Thanks for making me laugh! I'm also constantly told how young I am. I'll try to ignore their concerned expressions and tell myself it must be because of my lovely baby face!

It was definitely a big shock. How did you find coping with surgical menopause (if you did)?

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Surgical menopause has been ok. I do have hot flushes but they are quite mild I think. Do get sweaty sometimes at night but from what I’ve heard/read again they’re ok. Mood wise again seem to be ok, although it’s hard to tell sometimes as I’ve always been something of an emotional rollercoaster type of person 😂 and then you never know what’s a result of the having cancer and dealing with that rather than menopause! I have put on weight which I think is probably related to the menopause. Finally .. sex?!? Well let’s just say it’s like everything’s been switched off but again not sure how much is related to having had full debulking surgery as well and just again the whole cancer thing... we are working on it or thinking about working on it !!

Hope that’s not TMI. Xxx

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No, not TMI at all. I really appreciate the honestly. I don't know anyone who has been through surgical menopause, so it's great to get information. I have to say it doesn't sound like fun, but I wasn't expecting it to. Although I could really do with some extra pounds, but that might not happen - both my mum and my aunts were skinny before and got even skinnier after menopause.

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Ah hope I’ve not been too negative it’s really not been that bad. I definitely wouldn’t worry about it. And my consultant said that they would prescribe HRT If had really bad symptoms. They did say that GP might not prescribe but they would.

I’ll send you some of my extra pounds any time you need them 😘😂. X

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Hahaha, thank you! And don't worry, you're not scaring me. I'm really hoping for that debulking surgery and will deal with anything that comes with it!

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So sorry you find yourself joining us here, all I can say is it’s a lovely, warm, supportive and knowledgable group with experts on hand to. ( well we are all experts in our own disease as time goes on! )

This early stage is incredibly hard, the not knowing, the fear. Once a you are into a routine of what it is you need to do to live with this disease, you will adapt, somehow you just do xxx

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You are so right. I'm already finding it easier now that I have a treatment plan and am actually doing something. I was in a bit of a vacuum before starting chemo.

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Welcome to the club, so sorry you find yourself here, especially as you are so young.

The ladies here are fantastic at giving moral support and incredibly good information despite their own struggles.

I think it’s quite common for OC to start in the Fallopian tube, they think mine did. I’m 4b too.

Let us know how your chemo goes.dont believe all the scare stories on dr google about the side effects, talk to us.

Stay strong, and most importantly try and stay positive.

Sending you hugs and positive vibes.

Joy xxxx

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Thanks so much, Joy. Yes, my oncologists told me they think a lot of ovarian cancer starts in the fallopian tubes, but that they didn't know until recently. So they previously thought fallopian tube cancer was an extremely rare disease.

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Hello Kittycat. Lovely to meet you despite the circumstances. This community is a wonderful safe haven where we can laugh and cry together and gain knowledge and strength from women who really understand what we are going through even in the dark hours of the night when pumped with steroids, we are sleepless yet again. Good luck with your chemo. Very best wishes. Jo 🌺🌼🌸🌻🌹

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Thank you. Lovely to meet you too.

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Hi Kittycat--I was diagnosed stage 4a and they had to start with chemo with me as well. It was a good thing in my case--they told me it was "everywhere" and they couldn't do surgery yet. After three cycles of Carbo/Taxol, I had the surgery and the surgeon told my family when done he hardly found any cancer and the "ostomy's" he told me to prepare for, were unnecessary. I had three more rounds and was given the all clear. I found Frontline to be pretty tolerable and hope it remains that way for you as well. Thanks for posting and isn't it the truth about the responses when you do say you have OC? Those looks!! oxox

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Thank you for sharing that. It does give me hope. I was so prepared for surgery after getting my diagnosis, and disappointed when I found out I wasn't a good candidate. Now I'm realizing that people can do well even without surgery, but I still hope I'll be able to go through with it. Oh, the looks! It feels like some people start wording my obituary in their heads the moment they hear the words ovarian cancer.

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That’s my pet hate with this cancer - yes it has rubbish stats but it’s doubly hard dealing with the pitying head tilts and the simultaneous exhortions to be postive - usually from your health care team! Wishing you the best of luck with chemo and treatment - lot of good support on here and it’s far less scary than dr google x

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Hi Kitty,

Yes, those looks!! 🤭 But those people, caring as they may be, are living in the past!! It’s not like that now! I was at a recent conference at Reading Uni....they said basically there has been an explosion in knowledge about OC, drugs, surgical techniques etc. in the past 10 years! So everyone else is ‘behind the times’ and only WE know! 😀

Seriously, as a nurse, I thought, “Oh no, not OC!” But, as I’ve gone along, I get more knowledge & am very optimistic. I know it’s still a tricky customer - but watch out OC, we’re learning your crafty ways!!

Linda xoxo

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Thank you for sharing that, Linda! All the information I could find in those frantic first days after diagnosis told me there has hardly been any progress in the past 30 years!

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Not true at all Kitty (but....more funding is needed).

Pressure groups help - like ‘Target Ovarian Cancer’. This was the charity who hosted the Uni study day that I recently attended.

They do a lot of campaigning (with success), raise awareness & fund research. It’s worth looking at their website (& Ovacome too!).

The Christie Hospital in Manchester, many USA hospitals (Kettering?), trials at centres in Germany, France, Australia are all making huge strides in research & treatment.

Early diagnosis remains a b****r, but there has recently been a push for improved GP training/awareness.

I’m sure some of the ladies from these countries (on here) will agree.

It’s very exciting. An example, Avastin, which I was on for a year, has only recently been funded in the UK as ‘standard’.

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Thank you for that - I do feel that many of those involved in my care are a bit behind the times and also automatically thing of high grade serous as only type of OC - as I said to friend with secondary bc who is fed up with being told to be postive and sent lots of wacky this will cure you messages from friends, with OC they don’t bother as they just expect you to die! Glad that there are those out there on our side and trying to change that x

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Welcome Kittycat. It’s hard to get your head round all the jargon and different approaches to this so-and-so of a disease. Sometimes I think I don’t need to know but my curiosity usually gets the better of me and I find I can spend quite a lot of time looking up things to see if i’m on the right path. I try not to get myself down about it all but do need to be realistic and plan for my future however long it may be.

Good luck with your treatment and hope that you come through it as many have on here! If you dwell on the statistics it’s pretty scary but new things are being found on a regular basis that we all hope will improve our lot. Best wishes. Cheryl

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Thank you, Cheryl. You are right about planning for the future however long it might be. After reading the stats online (big mistake!) I almost thought I should start giving away my belongings and prepare to drop dead within a couple of days. But no, the world won't get rid of me that easily! Lots of luck to you.

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Hello and welcome! So sorry that you have any need to be here, but this is a very supportive place, filled with lots of knowledge to help you along on your journey. It’s very common to have some chemo prior to surgery, and in some cases may allow the surgery to go even more smoothly. Wishing you all the very best!

xx Gina

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Thanks so much, Gina. Nice to meet you!

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Hello and welcome to our very exclusive club. I too thought that was the imminent end of me when I was diagnosed stage 4 Clear Cell back in 2014 at 49 years old.

It was extremely scary at the beginning but it is amazing how the survival instinct kicks in and you deal with everything it throws at you. We are all truly super women.

The only thing I would add to what has already been said is that the Ovacome Helpline here is fantastic and beats Dr Google hands down! It gives you almost instant access to an OC expert who not only has the latest medical info but is also a caring empathetic human being who knows this disease and it’s impact inside out.

Once you are given your diagnosis OC is always hanging around, sometimes behaving more badly than you would want but you can snatch time away from it and when you do you become an expert at not wasting any of it. It is certainly a crash course on Mindfulness!

Sending you lots of love Juliax

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Thank you, Julia. Great advice. Yes, you are all inspiring super women. I'm not quite there yet, but I have started making my cape!

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Hi Kittycat. Just wanted to extend a warm welcome and wish you much success and tillykke med/with chemo. We're a half scandinavian household here, living in Germany, and it sounds like you are in good hands.

Have you tried having some (light) food with the antisickness meds?

All the best. Maus.

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Tusen takk, Maus. Very nice to meet you. I fasted the day before my first chemo and only received one pill right before which was supposed to be effective for 3-5 days. Will definitely try to have some food with the meds if they prescribe something that's supposed to be taken at regular intervals. Some people fast for days on end after chemo, but I don't think I could ever do that. It sounds horrible.

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I did something similar. Not proper fasting but reduced my intake to very little/light food from the afternoon prior to chemo day, and throughout chemo day. But still had a banana with the oral meds and Movicol, else my stomach would complain. Hope your meds can be adjusted so you feel better during those first few days. xx. Maus.

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Oh, that sounds like a good idea, I might try it next time. xx

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I eat normally before chemo and after, and I eat according to my appetite. I'll always have a little something, especially with meds. On the day of chemo, I allow myself (within reason) to eat whatever I want. It's difficult sometimes because enroute to my chemo appointment, I'll walk beside several food trucks and oh my! the smell of hotdogs call to me. I resist but at a great cost, lol.

Good luck with finding the right path for yourself with respect to food.

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Thank you Nancy. You are really demonstrating your strength as a super woman by resisting those hot dogs!

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Dear kitty I’ve just been in health unlocked and dead your story! I’m drawn to you as I’m 40 so am just sending so much love to you. It’s shit. In stage 3c and clear cell so more tricky. You can read all it up about my situation but wanted to reach out and send love. Xxx

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