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Fat belly? No. Ovarian Cancer belly (pt 2)

996 replies

TwitterQueen1 · 24/09/2017 19:37

The story of my ovarian cancer discovery is here

This is such an important health issue - there's a reason why OC is called the 'silent killer'. I really want more women to be aware of what few symptoms there are (I wasn't).

This is my story. I hope it's a long one.

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GhengisCalm · 13/11/2018 19:52

Best of luck for tomorrow Thanks

TwitterQueen1 · 13/11/2018 22:26

Thank you all x
I'll update tomorrow when I know more.

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TwitterQueen1 · 14/11/2018 15:42

Just back from Oxford. Good news! The trial is on (assuming the CT scan is OK). It is an extension of an existing trial that was only open to BRCA2 positive patients but is now being extended to BRCA2 negative.

There are 3 arms to the trial, weekly Taxol only, Taxol + daily Olaparib, Taxol + daily Olaparib + daily cediranib. Taxol is intravenous, the other two are tablets. I won't know which arm I'm in and obviously I want one of the latter two options but if I do get put into the Taxol only group the upside is that when that stops working I would be moved onto Olaparib.

I've got to 'pass' the tests first, which is basically checking via CT scan the cancer hasn't spread too far for treatment. My last scan was 13th Sept so I need another one.

The consultant gave me hope, something I've been without for the last year; not for a cure obviously, but for more time. She said if this takes too long to sort out (it's new, there's no paperwork in place yet), there's something else she has in mind. She also said there are trials starting in other hospitals, eg Royal Marsden, Mount Vernon etc.

So we're good to go Smile. And I popped into Maggies on the way out and got some help with my PIP application refusal. For some reason they didn't put me under 'special rules' despite the DS1500 form submission, so the PIP people will ring me in the next day or two. I'm tired now.

Big, sincere thank yous to GoneGrey and Chocolatelimes.

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Gonegrey31 · 14/11/2018 15:50

That’s BRILLIANT news!!!!! So pleased for you. And glad Maggies have helped out in a practical way. X

Pennina · 14/11/2018 22:13

Fantastic news TQ! A very productive day. Is your scan soon?

Did you park ok in the end?!

Pax

chocolatelimesaredelicious · 14/11/2018 23:12

So pleased the meeting was productive, Twitterqueen - I was very happy to be able to help! And I can help out in the future if necessary...

TwitterQueen1 · 15/11/2018 08:49

Penn - tx, parking was resolved thanks to a very kind poster. The scan should be within the next couple of weeks. There is no paperwork yet as the trust has only very recently approved the trial extension so the plan is to get me back for the scan and tests and consent all on the same day. The consultant gave me her PA's number in case I get worried but said she'd be in touch very soon.

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Gonegrey31 · 15/11/2018 18:27

TQ - there was a most interesting episode of the Life Scientific, with Jim al-Khalili earlier this week on Radio 4. He was in discussion with a distinguished scientist, Mike Stratton, talking about cancer genes. The programme mainly focussed on the quest to identify high risk breast cancer patients, but it was fascinating - and rather moving - to hear first hand from a scientist determined to achieve a clinical breakthrough for women. Worth a listen if you are a non scientist, like me. It's available online or as a podcast I think.

Pennina · 16/11/2018 07:48

My DH heard that on R4 and said how interesting it was too. I lost my DF to malignant melanoma and much was made re his failure to respond due to his "negative" gene status. I agree, it is moving. I must give it a listen

TwitterQueen1 · 16/11/2018 09:46

Tx - that was fascinating! Though I'm a bit horrified at the whole gene patenting battle. It really does bring home just how essential research is. Very interesting re malignant melanoma too - my DF has had a couple of moles / lumps removed.

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Pennina · 17/11/2018 08:10

There's some great new treatments for MM (PG not necessary for your DF) these days. My df was going to be on a trial at the Marsden. I've since read that those drugs are now licensed and having great results.

WrongSideOfHistory · 18/11/2018 09:25

Great news about the trial TQ - hope they can get the scan sorted and get you on it ASAP. Annoyed on your behalf about the pip though - hope you can get that sorted, it's hassle you don't need...

Gonegrey31 · 19/11/2018 17:03

I’m incensed about the benefits debacle and so sorry about this. The advice on the other thread to contact your MP is good, in my experience MP’s interventions can help . So furious on your behalf and do feel for you . Get that adviser at Maggie’s onto it too, you should NOT have to put up with this . Flowers for you

TwitterQueen1 · 19/11/2018 18:54

Thank you Gg. I can't face talking to anyone else about it for a day or two. I just cry down the phone, which isn't at all helpful. I'll ask Maggies to do it for me.

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TwitterQueen1 · 24/11/2018 09:13

I have an appt on Tuesday, which is great! It's very reassuring that things are beginning to move. It's only for the paperwork but at least they've now got the papers. Next step after that will be to return with signed consent and hopefully have my kick-off scan.

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Gonegrey31 · 24/11/2018 10:47

Yay! I am so pleased to hear this. Let us know how you get on . Sounds like your consultant at the Churchill is really on the ball.

Pennina · 24/11/2018 17:01

Good news TQ xx

TwitterQueen1 · 27/11/2018 18:05

I got somewhat worried when the nurse showed me into a private room and then said she'd make up the bed for me! I didn't have my hospital underwear on! All good though, a very nice Research Fellow walked me through the paperwork, none of which came as a surprise because I've already been on a trial.

I will have to go up again, maybe on Friday, to formally consent and find out which arm of the trial I'm going to be in. They will also do bloods, scan, ECG etc and then we can get started. I don't mind if it is before Christmas.

I did find out the results of my last scan (13th Sept), which no-one had told me about. Lymph nodes in the lung area are affected but not big yet. I didn't know this but I'm not surprised because I can feel my lungs are not quite right. Some small ascites in the left lung area - again, not surprised though it was news. Tumour in the right groin area, about 1.5x2.5cm. There's a tumour on the left spleen area too - again, not news.

He did say I was young and relatively fit though - coming from a delicious around-30-year-old that was nice Wink.

I think I'm going to be treated in the Early Clinical Trial Phase area of the hospital, which is separate to the 'normal' cancer treatment area and with a reception on the ward itself, not the huge 'general' waiting area. I felt 'special'! The lovely Jonathan (Dr Kwok) introduced me to the nurse who will be looking after me. They've said I can claim from parking and petrol and I can maybe even get transport organised and paid for too. I can't rely on friends unfortunately, not because they haven't offered but because the Churchill does everything on the same day, (bloods, heart echo, consultant, questionnaire, chemo, which means it will take pretty much a whole day to work through.

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WrongSideOfHistory · 27/11/2018 19:19

Good news about the treatment/trials TQ. Sorry about the new tumours though - will they operate again or are they thinking this new treatment will do the job?

Either way you seem to be quite positive - I have so much respect for you.

Gonegrey31 · 27/11/2018 21:25

I’m glad the medics seem to have taken such good care of you today . As I’ve said before, I’m sure you will be able to get transport to and from the hospital, please do take this up . You need it and of course are entitled to it. Hopefully things will get moving along on Friday . Nice to have an attentive young Dr paying you compliments too !

TwitterQueen1 · 27/11/2018 22:12

Wrong there is no point in operating because the cancer is so widespread - it's just in too many places. And once it's reached the lymph nodes those nasty little cancer cells get carried all over the body. Operations are great when the tumour is localised, ie in one place, but otherwise it's a waste of time and effort.

GG Tx, you're right. I mentioned the transport issues today and it does seem that I will be able to get help. I will push for this.

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Pennina · 29/11/2018 09:40

Looking good re trial - and I do hope they can fix things up with parking et cetera. I'm sure they will as they must appreciate that it is difficult for people otherwise.

Sorry to hear about the downside with the tumours, let's hope this trial knocks it back.

Blustery day isn't it? I have a nasty cough and feel rubbish (I have a chronic bronchial problem so can suffer a bit) so, as I'm self-employed, have given myself the morning off and am back in bed with a pile of crocheting!

Slightlyjaded · 29/11/2018 13:18

Hi OP. How did the scan go? I keep checking back to find out but hoping that the silence means you've been busy with nice things or getting ready for the trial to start?

TwitterQueen1 · 29/11/2018 13:29

Hi Slightly tx for asking. results of Sept scan (which I only found about on Tuesday) in my last but one post. Waiting for appt for a new scan, along with all the pre-trial screening, which hopefully will be next week.

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Slightlyjaded · 29/11/2018 23:50

Oh I think I have been refreshing with the thread in 'flip' mode Blush. Or on the penultimate page. What a twat.

Glad you are moving forward and how marvellous to be considered fit by a 30 year old doctor :)

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