Hello everyone - introducing me!

Hello everyone - introducing me!

I'm joining this forum to make new online friends who are also suffering from ovarian cancer. I had a shock diagnosis (when is it ever not a shock?!) of stage 4 in March, and am now trying to come to terms with everything - chemo, potential operation - hopefully soon - fear of recurrence etc etc.

I'm a full-time working divorced mother of 3 just about adult daughters. I have a great network of supportive friends but they're not there at 3am in the morning when all the darkest thoughts tend to jump out of the bedcovers.

I'm on weekly chemo - part of the ICON8B trial, which is messing up my veins - and having Carboplatin, Taxol and Bevacizumab (Avastin). Two cycles in, lots more treatment to come.

Coping well so far. Hoping the tumour will be reduced enough by end of June to enable the operation. It was too big and too dispersed when I was first diagnosed.

Cancer sucks.

19 Replies

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  • Hi TwitterQueen it sure does suck! Really sorry you have had to join us, but we are a merry bunch! I was diagnosed last July stage 1c2, had hysterectomy + 6 chemos then got an all clear in March. But also in March I developed lymphedema in my left leg (fluid) its very uncomfortable. Saw my surgeon on Tues and told him about it, it was my first 3 monthly check up. He says there could be a slight link as to why I have developed it, meaning there is still disease, so now I have to go for another mri..........I am worried sick. The lymphedema I am told is a chronic long term condition, will have to wear a support stocking for the rest of my life. I cried this morning about it all, feel very fed up. Anyway, still here to tell the tale, good luck with your journey, sounds as though they have been on the ball which is good. xx

  • Sending hugs to you, you are always so supportive to all of us wanted to end you a virtual hug xxxx

  • Hi Twitterqueen! Sorry to hear about your diagnosis...I was dx in summer 2015 stage 4 like you and had 4 chemo, surgery then 2 chemo and had no evidence of disease by the end of it. A year on beva followed and I am currently out on my own having finished my first line treatment.

    It does take time to get your head round this diagnosis so cut yourself lots of slack...not just for the physical effects!

    Hope all goes well for you..keep us posted xx Lyndy

  • Hi lovely,

    Welcome to this fantastic forum where all the ladies and gents on here are friendly.

    You're quite right cancer does suck! However on a positive note it has bought everyone here together so we're like an online family.

    I'm on here because I support someone with cancer and we find that there's more information here than we get from our oncologist team!

    My special person is on her 3rd line treatment she has had Carbo/Taxol, Avastin, Carbo/Gem and now she's on Carbo/Caylex, luckily she is not yet platinum resistant (meaning her body can still have Carbo).

    I would advise asking the oncology department for a genetic test to see if you carry the BRCA gene or not as if you are BRCA positive there are more treatment options available than there are being negative BUT as I say to every newb PLEASE don't consult Dr Google he's way out of date on that subject, also PLEASE don't pay any attention to the odds for example survival rate is x over 5 years you're an individual not a statistic and remember the Drs only know what they read off the screen and what they get out of books.

    When my special person was first diagnosed she got told she would live 6 months with chemo 3C she's still here 2 years 3ish months later.

    Xxx

  • Hi, it does indeed suck but all we can do is fight on, Im now in my tenth year, despite two recurrences, currently no evidence of disease and working fulltime. Welcome to the forum, feel free to ask anything! Maybe too late but stay off google, it cant tell you what will happen, you are you, not a statistic. Big welcoming hug, Kathy xx

  • Thank you for this encouraging post! I feel so encouraged when I hear of longterm survivors! Staying off google..that's the best advice I've read yet! I seem to google any new 'side effect' or symptom as it occurs and most often, google isn't full of great news..

  • Hi there, I am amazed they have already put you on a trial thats brilliant. I am on my third line & still no trial so you are very lucky.

    The fact you have found this lovely site means you will be one of the family!!! We are really nice on here because we are all in the same boat. Some are supporting others, we have husbands & loved ones, some are worried because they really don't know if they have it or not & others like me have full blown oc.

    You can ask anything any time because like me we don't all sleep through the night. Don't forget are finds from over the water as well. Take care Cindyxx

  • Hello, sorry your in our club. But if it helps your diognosis is exactly the same as mine was a year ago. I too have been on the same trial as you and the same leg weekly chemo. I have just got 3 more Bevacizumab left to have.

    When I had my hysterectomy the cancer had gone completely, I had the rest of my chemo and finished it last September . My CA125 is under5 and has been since I finish my chemo. Keep strong and positive and you'll get through this journey.

    This sight is great, the ladies on here are fantastic.

    Love Ann x

  • Hi TwitterQueen and welcome to our club, the one that none of us really wanted to be a member of. I agree, cancer does suck. Unfortunately we can't change that now, we have to get on with getting through the treatment and living our lives.

    Have you considered asking if you can have a PICC line? It does make life easier, especially as you are attending every week. We all know how it feels in those wee small hours, no sleep, brain whizzing with all sorts of thoughts. Do make sure you take your last steroid medication before 2pm each day. I found it helpful to go on you tube and watch an art tutorial, after a while I could feel my eyes getting heavy and I'd turn it off and manage to sleep. I've got up and made myself a cup of cocoa, flicked through a magazine, listened to the radio, internet shopping all sorts. Its a very lonely time in those wee hours. You could even come on here, you'll be surprised at how quickly you can get a response. Best wishes. Ann xx

  • Well hello and welcome. I'm almost a year down the line from diagnosis of 3c or 4 - they can't agree which - and had the gold standard Carbo Taxol with Avastin, op at the end (pulmonary embolism and too much at stage 3 treatments so had to wait till the end for the op). Not going to bombard you with advice but we are here and between us we have a mammoth pile of expertise and experience - which we'd rather not have accumulated but hey ho if it's there it's best it's used by those who need it.

    Try not to worry, really! I'm feeling ok and really getting the most out of my life, although my CA125 is rising I have decided to trust how I feel and trust my oncologist as to when I have more treatment. You kind of get used to this new situation. I'm really glad you have a good network around you, that has helped me loads.

    Take care and just shout if you need any advice, support or just a chance to rant.

    Netti

  • Welcome lovely, love the photo. We all agree that cancer does suck you're in really good company here and can ask absolutely anything at all (one of our favourite topics is bowels 😂). Do avoid Dr. Google, he's not reliable at all.

    I had my paclitaxol weekly (ICON8 trial in 2014) and struggled with my veins by the end of treatment, if I have to have any further treatment I'd ask for a line to be fitted so it may be the way to go for you.

    I hope you can get your surgery soon and then the remaining chemo and hope for a good outcome. Keep strong ❤️Xx Jane

  • Welcome to the group-it is,indeed, a great shock to be diagnosed with oc. I read the posts on this site every day and literally clung to this site in the early days.

  • Hi there, i was diagnosed in 2013 am still here now on 5th line treatment . I didnt realise they count oral medication as a line of treatment, so 5th line it is. Good luck.

  • Hello , I am in Australia and I am in my 5 th year since diagnosis. This journey is one of high and lows. Don't despair. Most people are very supportive and we all understand that awful midnight jitters. I find I watch a lot of old movies when I can't sleep. I guess just try to be kind to yourself , accept what is and love the moments when they happen. The best advice is true, stop and smell the roses. Best wishes. Sharon

  • Twitter Queen it's such a shock when you get dx with adavanced stage and very frightening, I was the same as you and had 4 chemo to try and shrink the multiple tumours, I responded so well to the new chemo had Surgery 29th June.

    I ha a further 3 chemo treatments post surgery and declared NED on ct scan.

    I am enjoying my life, but would not have got to this good place without the support of all the lovely ladies inspiring me on.

    Sending you virtual hugs and as all the ladies on this site will be with you on this journey.

    Hugs Ellsey xx

  • Welcome TQ- glad you found us all. We welcome you and ask away. We all have a wealth of experience collectively. Each of us respond differently to the same chemo. what works for one may not for another, We have so much to offer and give advise and support freely. You are not alone. we are sisters in this together.

    XX Carol

  • Hi - sorry you find yourself here but you're in the right place with lots of supportive ladies with a lot of experience who've really helped me get through first line treatment and surgery.

    I was diagnosed in December - stage 3b high grade serous and like you it was a complete shock. Back in December it felt like treatment would take forever but I had chemo number 6 last week and I'd had surgery after round 3. So I'm now coming out on the other side of this.

    I hope your daughters are coping OK. My youngest is still at home and just about to do A levels - I'm so proud of her for getting on with what she needs to do while things have been far from normal at home.

    Andrea

  • Hi there,

    Well I am 6 years down the line with this flaming disease! I have terrible veins and had a Portacath put in which was the best thing I ever did, they use it for Chemo, taking blood, CT scans, so much less stressful. I have Zopiclone sleeping tablets for Steroid days as I struggle to sleep and am on Escitalopram an anti depressant which helps me to cope. Baths with Dead sea salt for aches and pains are good. My children are now 18 and 23 and it hasn't been easy but as long as I am honest they mostly cope pretty well.

    Good luck, we are all here to help,

    Claire x

  • Hello and welcome twitterqueen, If your doctors feel that chemo is going to be an ongoing process, maybe you could ask for a chest port for your treatments. It has been a blessing for me and has saved my veins for other procedures since the chemo. You will find several of us are part of the that 3 am club you are referring to. These ladies have pulled me through several scary moments for sure.

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