Mum has stage 3 Mucinous OC any advice please?

[Anniellie]

Hi All, my mum was recently diagnosed with stage 3 Mucinous OC and she still has 2 blockages in her bowel which is making it very hard for her to eat so she is losing weight rapidly. Mount Vernon are offering to start carbo/taxol weekly from Wednesday, but say there are currently no trials running for any other therapies. Does anyone know of any other therapies that may help here or in America? Or have any stories of hope for us?

Many many thanks,

Xxx

[Petrolhead]

Hi

There are a few of us on here with mOC.

Try putting mucinous in the search box and it should bring up previous threads. You might find some interesting.

Best wishes

Fay

[Petrolhead]

Hi

Also I forgot to mention that there is the American forum Inspire that could be useful. Also I believe there is a Facebook close group for ladies with mOC. I sure lots of information on that. I am not on Facebook so can’t give you more information on that.

Best wishes

Fay

[Cynthia18]

I had stage 3c ovarian cancer 2 yrs ago i did the weekly carbo/taxol its a little easier on us.how old is your mum?

[Anniellie in reply to Cynthia18]

Thanks for your reply. She’s 72 but has always been fit and well and has no other health issues. Can I ask if your OC was Mucinous? Many thanks again x

[Cynthia18 in reply to Anniellie]

No it was not

[Anniellie in reply to Cynthia18]

I’m glad to hear you’re doing well

[Lind58]

Is surgery an option?

[Anniellie in reply to Lind58]

Oh yes sorry she had a massive surgery that removed everything they could get (full hysterectomy, plus scraping of the omentum) apart from the bowels which they initially thought were just spots but it seems at least one is a tumour.

[KiwiGirl04]

Carbo/taxol is the gold standard for all ovarian cancer but with Mucinous OC some oncologist use a chemo usually used for bowel cancer eg Folfox or Folfiri.

I have also been told there are no trials for Mucinous unfortunately.

[Anniellie in reply to KiwiGirl04]

Thanks for your reply. It’s so frustrating about the lack of trials. I’ve read some good things about intraperitoneal chemo but without a trial it can’t be done ☹️

[Maxjor]

Have you gone to the US clinical trial site (clinicaltrials.gov) where you can narrow down the search options and eventually see if there are any anywhere in the country. Not saying you can or your Mom would travel there but you never know. My onc always says Carbo/Taxol is the gold standard but even Taxol alone does well with OC and I am hoping that means in general for all types. Good to add to a list of questions if you have any started for another visit to you Mom's oncologist or other ones. Good luck!

[Anniellie in reply to Maxjor]

I haven’t done so but I definitely will, thanks so much for the advice

[dsdtx]

Sorry to hear about your mum’s new diagnosis of mOC. was diagnosed stage 1C3 mOC in February 2019. Before chemotherapy, I had to do both Upper Endoscopy and Colonoscopy to make sure the cancer was primary or metastatic. With no signs of the disease from my GI system, my OC doctor from MD Anderson in Houston TX recommended to use colon cancer chemo because their team believed that mOC had better response to colon cancer chemo medicine. Now i have finished 12 round treatments, the outcome was really good, and the side effect was manageable. I did a lot of research online and read many posts from different discussion groups, learned many of mOC ladies used the colon cancer chemo treatments.

[Anniellie in reply to dsdtx]

Thanks very much for your reply. We did ask our Oncologists and the cancer centre near us but they didn’t seem to think that those chemos were the best idea. We will keep asking. Thanks again

[cbulha]

Hi, I'm so sorry to hear about your mum.

I am in Lisbon, Portugal, and was diagnosed February 2019 mOC stage 1A expansile grade 3 (later found downgraded to grade 2, but not much of a difference).

International guidelines said my stage wouldn't require chemo, but contacting MD Anderson (off the record, through a friend), I was advised to have preventative chemo (also by my gyn onc at Champalimaud cancer centre).

I was given chemo for GI cancers: Oxaliplatin (intravenous) and Capecitabine (tablets), as I was told that mOC was resistant to the ordinary chemo used for the other most common types of ovarian cancers.

My last CT scan showed no signs of recurrence, so I'm hoping to keep that way for many years to come...

Usually mOC affects women at a younger age and pre-menopausal, so I'm surprised about your mum's diagnosis.

Keep us posted on how she's doing, please!

Stay strong Xx

Claudia

[Anniellie in reply to cbulha]

Thank you so much for your lovely message. And thanks for the info I’ll add it to the list to ask the oncologists about. It’s been an awful shock and at the moment we’re just trying to get her to the point where she can eat and drink so we can build up her strength.

Thanks again

[Grace123]

Really sorry to hear about your mum. Have you thought about getting a second opinion? Eg Royal Marsden? You could also try ringing Target Ovarian Cancer to check up on possible available trials, etc. Wishing you both the very best.

[Caroles1]

Hi,

I was mucinous 1c and had a full hysterectomy and de bulking op. I was also drained as I had ascites over a 2 week period before my op.

After the op, I had 6 months carbo/taxol.

I have just reached my 5 year anniversary with no re occurance.

It can be done, but I’m not being smug, living my life, no idea if it may come back, but I hope not.

Wish you all the best xx