Ovarian Cancer

[2belles]

Has anyone any experience? My bestfriend was diagnosed 16mth ago. She has had 2 cources of Chemo , Avastin & Olaparib. None of these seem to be working. She is currently not on any treatement as she is waiting to start a type of immunotherapy in a few weeks. Just before she was taken of Olapairb which she was on less than 2 mths, she had a moderate build up of fluid. Its been over a week and her bloating & pain has increased significantly. She is hopeing to get this drained this week.
What im wondering is what does all this mean (I dont want to ask her ). We know its uncureable but are thing progressing fast? I feel like she is slipping away from us or am I panicing? Any advise greatly appreciated. Im utterly heartbroken she is only 37 with very young kids xx

Hello 2belles
Sadly I can help. I have my own thread on OC, which you can read here if you wish, and also show it to your friend if you think it would be helpful.

The fluid build-up is called ascites and it is drained very easily and painlessly. Mine disappeared after 2 'drains' when I started chemo. I think your friend would be on Carboplatin and Taxol (aka Paclitaxel) as well as the Olaparib and Avastin?

I am on third-line treatment, which means two lots of previous chemo have kept things at bay, but not got rid of it. I'm now having 2 drugs, Cediranib and Olaparib) that I take in tablet form every day.

My advice when talking to your friend is to not ask her "what it all means." She will know how serious it is but won't want guesswork and melodrama. Stick to the practicalities - cooking meals, entertaining the DCs etc, and also just let her know you're there. Have coffee, send a text etc etc. Ask her what she would find useful and then do it. My DSis will insist on trying to manage me and tell me what she's going to do - which is effing annoying, tbh.

There is a trial called Octova, which is run out of The Churchill Hospital in Oxford, but is available across the country - if she is suitable.

Don't hesitate to ask me anything.

Just to clarify - your friend would not be on all 4 of these drugs together. I had Carbo & Taxel & Avastin together. Avastin didn't work. Next chemo was Caelyx. This treatment is Olaparib & Cedirinab.

Hi, my good friend was diagnosed a year ago. I learned a lot from TwitterQueen's thread, my friend has mirrored her experiences.

A dear friend was diagnosed with stage 4 just last week, only 10 days after starting to feel unwell. She’s just started chemotherapy but 2 days after her first session she’s in hospital.

Everyone is welcome on 'my' thread btw. I won't say 'the more the merrier' but it becomes a bit less awful hearing other people's stories and having a few hands to hold.

Milly sorry to hear that. Hopefully it's 'just' a reaction to the chemo drugs. My first week was bloody awful.

Thanks for your reply,
She started with Taxtol & Avastin
and continued with the Avastion for a further 4 mth but was told this wasnt working. She then went on Cistaplain.
After that she was on Olaparib for less than 2 months when they discovered moderate ascities . This was just 10 days ago so they stopped Olaparib. She is awaiting to start a trial of immunotherapy (dont know name). In coming weeks but she is very bloated & in alot of pain since coming off Olaparib (tablet form).
She doesnt want to do more chemo. I suppose with how quick the bloating/pain has progressed in the last week it has scared/paniced me!!
Twitterquuen1 thanks ill read though your thread, im sorry you are going through this xx. We speak everyday like we have for the last 25yrs. I dont ask too much about the actual disease but I let her speak about it freely (then I google🙈).

Im just feeling so overwhelmed at the moment and trying to get answers. Thank you all for your replys .

There are no answers OP.

Im in the middle of reading through your thread! Thanks for sharing your journey xx

Twitterqueen im finding that out xxx

Thank you for reading it 2belles. I was completely ignorant of the symptoms so I hope to raise awareness by writing it about it.
TQx

Something you said which really rung through. How can you feel & look well but be so sick inside! Apart from the last week or so with the build up of fluid, looking at my friend you would never know she is so seriously ill .(chemo aside) she had felt relatively well.

Its so important to get each story out there to highlight symptoms ect. Like you I had no clue about ovarian cancer before all this happened. I rem the time just before she was diagnosed never in a million year would have thought this. She was only 35 , no history if cancer in her family. It was devastating!!

TwitterQueen1 very best wishes too you, ill be following your thread xx

It is unnervng isn't it, that people can look so well with cancer? I had an early stage Breast Cancer back in 2008 and had surgery. When I had the radiotherapy I was surprised that all the BC patients looked so healthy.
My dad also looked healthy when he had Lung Cancer so it was such a shock to then go downhill very fast and die within a couple of weeks of diagnosis. There again, he would have hated to look really unwell for ages, so it was a blessing really.

Yes it really is. Im glad my friend looks well especially for her children.

Well she got the ascites fluid drained, 2 days ago. They kept drain in for 24hrs before removing. She was on morphine for pain, they havnt been able to take herher off morphine as she is in so much pain. They have done an xray if abdominal area.
No idea whats going on, waiting on results now. Im so worried for her

for your friend, 2belles

And for you.

Update: cancer is very close to the bowel now. Consultant is starting her pembro asap as its her only chance (whatever that means). Its very expensive so I dont even know how they will financially be able to sustain that. Her little ones birthday next week and she wants is to be home for that

Is she in the UK OP? Or a private patient? The cost of drugs shouldn't be an issue otherwise..
I'm sorry to hear she is in such pain. I've been fortunate in that my cancer has not affected my bowel (so far, touch wood...) but a stoma is a common option in these circumstances.

Twitterqueen no she is in Ireland.
Unfortunately she has to pay for the drug here, think its still a "trial" drug for ovarian cancer here.

There has been a very publicized case where it has been successful in a cervical smear case here, campaigners have been pushing for it to be free for other cancers too but unfortunately its not yet free for ovarian cancer. Its cost roughly €140,000 per year!!

Are there any trials that might be suitable for her?

I dont think so Consultant thinks this pembro is only option.

Thank you missed your post the other day.

My friend is starting pembro this week.
They are able to fund 3 rounds , god knows what will happen after that. I feel so helpless .
Has anyone been on pembro? I hope ityour isnt too severe !