Hubby

[Molste]

Hi has anyone got mucinous ovarian cancer and what was the treatment, really worried for my wife it's stage 3

[Lyndy]

Hello Molste, there are people on this site who are in a position to offer advice. Unfortunately a bank holiday weekend means that lots of us will be doing other things. Be patient and I am sure you will get some replies xx

[Molste in reply to Lyndy]

Thank you

[Notage]

Hello, so sorry to hear about your wife it must be a really upsetting time for the whole family. Please do consider getting in touch with Ovacome they other free sessions that your wife might feel like joining in with as lots of ladies in the same boat. They have support lines and a wealth of information. I've put the link for mucinous just in case you haven't come across this info yet. Best wishes for you all ovacome.org.uk/mucinous-ova...

[Newbery3]

I think you should get in touch with overcome, they have lots of advice and can also give counselling. I used them when I was 1st diagnosed and they were so supportive. Goodluck x

[Alibee2]

yes I have both mucinous and endemetroid types - Ist diagnosed 2016 stage 1C now on 1st recurrence (found on surface of liver) - treatment was initially radical hysterectomy then 6x Carboplatin. This time again surgery to remove then 6x Carboplatin followed 🤞 by Niraparib (preventative PARP inhibitor) As you will probably know now this is a rare type so it’s scary that there is very little info there but Ovacome charity have a leaflet about it on their website & they also run a regular zoom rarer ovarian cancers support group, there are 2 good mucinous OC support groups on Facebook (1 is UK only). Don’t whatever you do google survival figures! They are well out of date new treatments are arriving all the time & everyone is an individual and responds to treatment differently! I wish your wife well & if I can be of any assistance… don’t hesitate x

[Molste in reply to Alibee2]

Hi thanks for replying,she's stage3 but I've read chemo doesn't work which is worrying as she is having 3 rounds then hopefully surgery then 3 more.Is there treatment out there now and what is the Facebook account thanks

[Alibee2 in reply to Molste]

I was told that There’s no clear evidence either way as becos of the very few ladies who have this there haven’t been enough participants to do the necessary studies for all the different possible chemo regimes. All I can tell you is I was in remission from Feb 2017 to May 2023 so something must have worked. You can look at immunotherapy etc & you/ your oncology team can look to see if anyone has done or is doing trials specifically involving mucinous OC. I know that sometimes chemo regimens normally used for colon/bowel cancer are used eg Folfox as they are mucinous in nature.

Facebook: Mucinous Ovarian Cancer Support Group

Mucinous Ovarian Cancer support group UK

[Doggies221 in reply to Alibee2]

Alibee, I pray you find the right treatment and given your apparently positive spirit, you’ll overcome this recurrence:). It’s rare to have mucinous/endometrioid mix, right? Was the tumor ER positive? Have you ever used HRT?

[Molste]

Did the parp inhibitors work for you?

[Alibee2]

I won’t be starting on Niraparib (PARP inhibitor) until July when I have completed this course of chemo.

[Molste in reply to Alibee2]

Thanks

[Petrolhead]

hi

You can do a search on the site for topics containing certain words like Mucinous. There are a number of posters who have contributed on this type. Although as previous posters have said treatment options change especially with the arrival of parps. You may find previous threads interesting.

Be aware the the facebook group suggested is a female only group so you would not be allowed to join that yourself.

Best wishes

Fay

[Molste in reply to Petrolhead]

Thank you

[Molste in reply to Petrolhead]

Hi petrolhead thanks for replying, as you said the Facebook groups are ladies only soi can't get the info im looking for.Im reading online that mucinous doesn't respond to chemo very good and just wondering with you going through similar if you could reasure me thanks in advance.Also is goggling worth while

[Petrolhead in reply to Molste]

Hi Molste

If you look at my profile you will see I was stage 1C (2016). So not in the same position as your wife. And it was before the PARPs were so prevalent. These have really revolutionised treatment of all OC. There is a fair amount of information in my previous posts and in my replies but of course I am now out of date due to these advances in treatment. If you have the funds you can have a private appointment with an expert for example from the Marsden. (Dr B) at their private treatment facility. She is in regular contact with Professor Gershensen at MD Anderson in USA. In fact he used to advise the FOLFOX regime for mucinous although it has not been recommended in uk (except Ireland) as they (consultants ) are not allowed to go outside the NICE guidelines except in exceptional circumstances and can be liable if they do so.

You could also join the Inspire forum. This is an America one so has lots of stuff about payment options via the American system. Again you can search for mucinous so you may find something there of use.

You ask if Google is worthwhile. As is said in a lot of threads most of the stuff is out of date. As parps are relatively new there are not many published papers on trials for treatment. As mucinous is quite rare it is difficult to set up trials. A few years ago a trial COG 241 (if memory serves me right) was set up worldwide to compare treatments. They wanted 200 participants but only managed to get 30 odd worldwide so it was abandoned.

So as you have found current information is scarce and older information out of date.

So as I said- if you have £ then a private consultation might help. You are entitled to a second opinion on NHS and I requested one at the Royal Marsden in London. I don’t know if you have gone this route. Ovacome has information on how to get a second opinion (on NHS).

No obvious route for you to get the information that you want.

Just a thought- if your wife is on Facebook she could join the group? I am not on Facebook but have access to my other halfs account. A warning though just because ladies with the same type may discuss and may suggest options off grid the ladies may be desperate for something different. Everyone reacts differently to treatment.

Just a few thoughts for you.

Best wishes

Fay