Hopeful

My mum was diagnosed with advanced ovarian cancer in November. It seemed to take so long to get the diagnosis despite being told about it at A and E. Mum has epithelial serous cancer and started treatment in January. It was on her 75th birthday!

We managed to get her on the ICON8B trial where she has carbo every three weeks and taxol at a reduced dose each week. It is such a relief to get treatment and I am so pleased she has responded so well to the chemotherapy.

As yet, mum has only had some pins and needles in her feet and thining of her hair. The second cycle started yesterday and I'm remaining positive that the ascites stays away and she feels as well as she does

I have been reading all your posts and have been reassured by all your comments. It has been a tough few months!

18 Replies

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  • Sending lots of hugs and love to both you and your mum, I did the ICON8 trial in 2014 and was on the same regime as your mum is now, and I'm still here to tell the tale.

    Simply wigs is a fab wig site and you don't pay VAT. Your positive attitude will really help your mum through all this, keep it up ❤xx Jane

  • Thanks Jane

    It's so good to hear you were on the same trial. Did you have surgery as well? I'm determined to keep one step ahead as initially our experience was so stressful and we were backwards and forwards to hospital with ascites building up and mum being so uncomfortable with it.

    Love

    Chris

  • Hi, yes I had full debulking surgery before my chemo including removal of my omentum. Who knew we all have one? 😊 The ICON8 trial I did was to determine the best way to administer the two therapies, I was put on the arm which, I believe, has resulted in the way your mum is receiving her treatments now and I believe the ICON8b is aimed at older ladies who are stage 3 or 4. The neuropathy is a bloomin nuisance, mention it to the oncology team and itemised it on the trial form you complete from time to time at clinic, often the neuropathy will go away after treatment finishes, usually within 12 months but it doesn't always so make them aware. Hope you both continue to do well ❤xx Jane

  • So glad you've found this site and that your mum is doing well and has a caring family x if her pins and needles continue or increase please get her to inform her team. Hair thinning and loss can be traumatic to prepare for however if it starts to come out then taking charge through either a crop cut , scarf or wig is very empowering. See if she can also get on a Look Good Feel Better beauty afternoon. That's a fab session which really helps our esteem and you get loads of lovely cosmetics and a lesson in make up which really does help. Your hospital in the LGFB website will tell you where your nearest one is.

    Love to you and your mum

    Clare

  • Thanks Clare

    I have just booked mum in at Maggie's centre for a beauty afternoon. That sounds great! We went for her wig which I must say looks amazing. In fact it's better than her own style! I'm so glad I posted on this site. Love Chris

  • Wishing your mum all the very best with her treatment. xx

  • Hi

    Glad your mum is responding well to treatment . Yes a shock to the whole family when diagnosed and the time really drags when you are first diagnosed . I was diagnosed in June 2016 when taken ill whilst on holiday in Mauritius and then had to repeat a lot of the tests once back in the uk before chemo started .

    I generally coped well with chemo and used to have a few side affects day 3 and 4 . Good to drink plenty of water and keep walking if your mum is able. Used to help to walk around the bedroom in the middle of the night if felt uncomfortable but 2 nd and 3rd week felt OK . Suffered from numbness in my toes and dose of taxol reduced to help.

    Hope your mum continues to cope well and remember as others have suggested if she is suffering to ring CNS as they can help.

    Best wishes to you both am sure she appreciates all your support

    Kim x

  • Thanks Kim. What a place to find out about your OC!! I think the taxol is the more toxic therapy but luckily mum is on the trial with a reduced dose already. I'm grateful for the treatment. It's amazing how it works so well x

  • I was on the same trial as your mum and had chemo weekly I was fine. Obviously there were side effects along the way but cooped with them ok, the ascites never came back. I'm now on beva every 3 weeks until june. Wishing your mum all the best xx

  • Thanks for all good wishes. I hope that my mum gets maintenance Avastin/ Beva but think that comes after debulking if they can't get it all. It's a journey and it's good hear positive stories. X

  • It's part of the trial to have beva after chemo. I had no disease left after debulking, but still finished my chemo and beva xx

  • Hi

    Big hugs to your mum and you. Glad to here your mum is doing well on Chemo. Always nice to hear some positive news. Kathy xx

  • glad your mum doing well on chemo it's a rough road but being positive helps so much... keep an eye on the tingly in her feet and do tell her onc about it as they can become quite painful and they do have drugs to help 🤗

  • Strangely, I was also diagnosed as having ovarian cancer in November but didn't get an exact diagnosis until the January last year. I think until it's known exactly what type of ovarian cancer it is, the chemo doesn't start. I had four chemo and then my operation was able to take place.

    As others have said, keep in mind about the pins and needles because it can develop into something called peripheral neuropathy and can become really painful for some and not get better so it's important not to "grin and bear it" so to speak.

    Like your mum, my wig was better than my real hair so I was always happy to wear it, except on hot days!

    All the best!

  • Thank you

    I will keep asking mum about her pins and needles. It's great to have such helpful advice x

  • Exactly the same as your mum, 5 years younger ( diagnosed June 2016), but at least quickly picked up by my GP when symptoms escalated rapidly and C125 blood test came back in the high 3000, then all systems go and straight into 2 lots within 3 weeks of asceties(?) drainage. I suddenly lost a huge amount of weight from that alone... total of 11 litres of liquid ( how did I not take more notice of that is what I keep asking myself.) Anyhow once on treatment it didn't come back.

    I am also on ICON8B trial ( Christie's) on arm which had equal carbo / taxel/ avastin - though taxel caused me most problems and had to be taken off it on round 3 due to bad reaction.... no avastin on that round and wait For radical surgery ( appendix gone also - there's a lot of 'stuff' our bodies don't need or can do without - especially post menopause 😳). Tough week but bodies recover and felt OK after about a month. Just took bowels longer to recover as there was a lot of unpicking dead disease from there ( do others have strange images of what this actually looks like?) - My friend says bowels do not like to be 'handled' and protest by not behaving / performing as they should...

    Yes the leg pains etc one of the worst aspects of the treatment - for me anyway, however the more posts you read on this site the more you realise that EVERYONE is different . My hair is beginning to come back but feels and looks entirely different so I imagine myself being 'reborn' a new lady.

    Long may that last!

    Now on the long haul (September) on avastin alone, which is a doddle compared to chemo, just get the strangest painful tingling and drippy nose each morning...

    Last weekend booked two holidays between doses so feel so much more positive at the moment....

    All the best to your mum - I look forward to hearing more

    Janet x

  • Thank you for your comments. Are you having the 3 weekly treatment? Mum is having surgery on March 13th and has lost weight now that the ascites is under control. You had such a lot of fluid. My mum had 6 litres then 5 litres and just before chemo she had 7 litres drained. It was awful carrying all that extra weight. Glad you are managing so well

    Thanks

    Chris

  • Hi Christina, welcome to the site, I am glad you have picked up some information here from us. I am sorry your Mum got this illness but she seems to be doing okay so far. What I would recommend is that she soak her feet in a basin of warm water with epsom salts, that does indeed help with the pins and needles in the feet.

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