My Ovacome

14,294 members • 16,820 posts

Update post - let people know how you're doing! (Autumn 2018)

Hello All

It's that time of year again in the UK when the clocks change, which means its time for an update post which I will pin to the side bar.

If you haven't posted for a while but would like to let your forum friends know how you're doing, please do leave an update in the comments below. You are of course always welcome to start a new post with your news, but it won't be pinned so may get a bit lost on such an active forum.

It will be great to hear how you're all getting on.

Best wishes

Anna

Ovacome Support Service Manager

16 Replies

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Still soldiering on, i was told last January that I’d be lucky to see out the year! I’ve got this far, so I’m determined to see Xmas out. Although I’m finding I have more off days now, I’m still enjoying days out with family and friends.

They only gave me a few weeks in April. Come on girl we can do this 🤛🏻 Jump the line into 2019

LA xx

Hello Friends. Having read Anna's reminder about updating our progress I decided, rather belatedly, to respond. Had been meaning to Post my news since the beginning of October.

After being on Taxol and Carbo for three sessions and not achieving any tumour shrinkage and with one new tumour, my Onco suggested not having the next three, " as the chemo is so hard on my body. Quality of life is important, too." I was rather horrified and said that I would still like to have the whole Course. I said there were always some good days and even when things were very bad I hung on to the thought that things do improve towards the end of each cycle and life was better again. So I continued with the Chemo, helped by blood transfusions.

The Result? GOOD NEWS !! One tumour had actually shrunk by 2mms, none of the others had grown and no new ones. So Onco said we'd made the right decision to continue. Arranged for me to have two more bags of blood which helped me a lot. So great to tell all the family . Now we keep our fingers crossed for more good news when I have my next three month scan.

Hoping you're all doing as well as can be expected. With love, Solange 😊

So glad to hear this Solange. Hope your next scan brings good news too. X

Not been a good month,my Dad who was diagnosed with cancer six years ago died on the 25th, October,it got him in the end,I myself am starting to worry,as I have been getting a sporadic dull ache under my right ribs, went on Google and that is we're my liver is,so feel like my luck is running out, well that's my miserable update, haven't got any positivity at the moment, sorry xx

I’m so sorry for your sad loss, I totally understand your grief. Have the dull ache checked out, it may be nothing but if it is something then the sooner it’s dealt with the better the prognosis? Take care lovely lady, hugs and love ❤️Xx Jane

Thank you I am at Christie's,at the end of November, so I will mention it then, xxx

So sorry to read about your Dad, Izzy. Very sad for you. I wonder whether you could change your appointment for an earlier one as it's a long time to worry until the end of November. Worth a try. In the meantime, try and keep your pecker up. Sending a big virtual hug, love Solange 😊Xxx

I’m sorry you’ve lost your Dad. I think about mine a lot, he didn’t have cancer he had renal failure after several strokes. It’s hard without them but I take peace in knowing he’s watching over me with my Mum and my son, ready for a big hug when I join them.

Try not to worry about your pain. I’ve always got one somewhere even with my wheelbarrow full of meds

I often get a pain under my ribs, sometimes an ache, sometimes a stab, others just discomfort. When you think the liver performs over 500 functions we’re bound to be aware of its presence sometimes.

LA xx

Thanks lily_anne, I know I am just so sad,xxx

😘😘

Been in remission now for 13 months , next appointment and bloods November, keeping all crossed. Being kept busy as my disabled daughter is moving into supported living on the 19th Nov , she’s so excited I’m in bits. It was something after my cancer diagnosis I knew I had to do ( she’s 29 ) I love her so much , every time I see all her new bits for her place in the hall I’m in tears. Silly I know, but unfortunately she was diagnosed with BRCA2 and I just pray that that I’m around for a long time yet. The thought of her going through the preventative surgery later on in her life without me is unbearable. I’m sure she’ll be fine, but no one can look after your child as you do. Sorry it went from positive post to my utter sadness but I feel so sad that she has to go through all this 😞

Had radical surgery in July this year, (third op in 18 months, after being referred to London) and currently on number four of six chemos in Devon to see if that combo will halt my rare form of OC (Granulosa Cell Tumour) and give me a bit of respite before the b#stard makes itself known again. Things seemed to escalate fast for me from initial diagnosis & hysterectomy in March 2017. My Inhibin started rising last August, and hasn't come below four figures even after laparoscopic surgery in Feb this year. Anastrozole gave it a shock, but it then started rising again after an initial dip. Last time I knew it was around 3000 in the summer before surgery.

I have recently heard that I've had three successive Inhibin drops, to 117 in mid August to 43 in early Sept and 20 most recently! I haven't had it this low since this whole charade began! My recent scans aren't conclusive, but seem to show nothing more than a lymph node they want to 'keep an eye on', so I am very hopeful we might have at least arrested the march for a while!

Wishing all you ladies peace, hope, and continued support. We can do this!

I’m now on my 3rd Line of treatment (Gemcitabine) and feeling remarkably good but too soon to know if it’s doing any good and because my 2nd Line (Caelyx) did nothing I’m not getting too carried away and just taking this feeling good feeling at face value. Me & my ‘unpredictable’ cancer are still jogging on with each other and Ive told it I’m not going anywhere soon.

In year four, just finished caelyx which has produced good results, inthat my lung nodules have reduced considerably and no evidence of further spread at this point. So have three months off and at present appear to have no side effects in fact for the last two days have not rested during the day, feel happy at present to be'normal' but am not holding my breath as know it may be back with a vengeance. This disease has been at times too hard to bear with the insufferable tiredness and other side effects, but

good that It is being kept under control at present and fir that I am eternally grateful to Dr Banergee at the Royal Marsden

Jackie O

Hello my new friends, this is short friend here, thank you for all the love and positive responses I got when I was a "newbie" and terrified. sorry if I missed some out with my response, I am not very computer literate but learning to navigate the sight. I was prepped and ready for the big op to debulk and remove ovaries and fallopian tubes, get stoma and so on last week. When I came round I was told that they had made a decision not to go ahead just now as they had discovered a vaginal tumour they did not know about and operating might affect my bladder. At least this is what I understand at this stage! It has now been decided that I start on chemo first to try and shrink first then have a bigger op at the end of this. Sill waiting results for biopsies and will start once I have recovered from the small op. So just hobbling about just now and hoping for the future. I can cope with a stoma and hair loss but dread the thought of bladder trouble as well. I know it is trivial but I find catheters almost unbearable and I could wait for them to remove it. There must be alternative? I would rather wear six pair of padded pants and waterproof trousers!!I sorry, I hope I haven't upset anyone, I start to use humour when I am really afraid) don't know if bladder treatment would involve a permanent catheter or what they do so will be looking into this.

However, the main thing I wanted to say is , a big thanks to all of you for sharing and replying and being so brave and caring. This forum is keeping me positive and I hope I am sending positive vibes back.

Much love and virtual hugs

short friend

xxxx