Feeling lost

[HogM]

Following full hysterectomy, removal of appendix, and omentum , graded as 2a mucinous, which was found in the right ovary , and a small microscopic amount in the left .

I was told mucinous is very hard to treat and had 6 months carboplatin chemo .

Unfortunately I have a recurrence just 6 months later and now in my peritoneum and told its incurable

I have been given the choice of taxol but not sure if this will work , just back out of hospital the second time with asceties drainage which can back just within 10 days if the first drain

Feeling totally devastated and last at which way to turn , and feel I have little hope

Have approached COC London and waiting to see if they can offer any hope

Would love to hear from others in this situation and any support they can offer

Margo

[Tulips66]

Hi Margo, sorry to read you have been given this news but don't give up, I would take the offer of taxol and see if it stabilises the bugger in your peritoneum. If there is no change & you are finding it hard to tolerate you can stop. I was diagnosed in 2019 3c high grade, 8hour operation followed & have an ostomy bag. I had 6 carbo/taxol & then 19 maintenance avastin. Ten days after finishing Avastin Ct scan showed it was back already. I had a inguinal node dissection Dec 2020 & started chemo carbo/Gemcitabine again in march. I still have a node in my peritoneum but it has decreased in size. I am now on Gemcitabine only & I am hoping it will keep it at bay. I will never give up until a time maybe comes when they can't offer me anything & once they keep offering I will keep fighting. You will find the strength to do the same especially as you are only the same age as me & have so much more living to do. Keep going for as long as you can & if you ever need a talking too again 😂 you can Pm me & we can help each other through. Lots of Hugs & goodwill 🌺MagXx

[HogM in reply to Tulips66]

Mag

Thank you for the prompt reply and support, wow you really going through it too

I hope when I come to terms with things I can find strength like you and battle on

Yes we have much more living to do

Would love to keep in touch

Much love

Margo

[Heart12345]

Hi Margo, I’ve got a different type of ovarian cancer but just looked up for you on the ocrahope site and found this. I can’t do clever hyper links but if you type into google search these words it should come out first - OCRA rare ovarian cancer research updates 2021- and there is some interesting information on mucinous ovarian cancer maybe something to talk to your specialist with. Good luck and remember the research field is always coming out with new things 🤗Mish

[HogM in reply to Heart12345]

Thank you for taking the time to do this for me I will certainly have a look

I need hope

Margo

[Ruebacelle]

Taxol works w ovarian All is not lost think of this as an ongoing disease w ups and downs. Hugs from paris

[HogM in reply to Ruebacelle]

Thank you x

[purfekt10]

I had carboplatin with taxol for peritoneal cancer 3 years ago. That combination of chemo worked well for my stage 3b cancer. You are in my prayers.

[HogM in reply to purfekt10]

Thank you x

[Gardeningartist]

Dear Margo I'm so sorry to hear that you have a recurrence. I too have mucinous Stage 2a and am just coming up to my second cycle of carbo.

I hope your team provide you with good support and that if you decide to have taxol that it makes a difference.

Good luck and best wishes and please let us know how you get on Jo x

[Desertrose62]

Hello there, how are you doing?

[londoner0]

Hi Margo,

Sending you so much love. This community is really here to support you, and although it’s so natural to feel lost, do lean on this community. I don’t come here much but we’re rare mucinous so I thought I’d reply albeit late.

Have you asked your care team about Keytruda? There are some Stage 3 & 4 MOC women doing well on that. It isn’t offered as standard but you can ask for the test to see if you have the markers that might mean it would be worth exploring further.

The drug itself is only offered on research grounds (as a single person trial?) by the drug company but there are women in the mucinous community who know how to get care teams to liaise with the drug company and get it sorted. There’s an active mucinous community I can direct you to, if you direct message me.

Also, definitely get a second opinion with an oncologist who is experienced with Mucinous OC if your team hasn’t got a lot of experience with MOC. Because it’s rare, direct MOC specialism is very important and your team won’t be offended - they’ll be happy to refer you for a second opinion.

About me: I was diagnosed Stage 2B low grade mucinous in August 2020 aged 30. Had the full-everything debulking surgery in October 2020 then did 6 cycles of Carbo/Taxol until April / May 2021. I have the 1 year scan in April but been NED so far. Fingers fingers crossed it stays that way!

You should also search for petrolhead’s posts as she is a mucinous lady too, and always replies with lots of informative posts.

Much love,

X

[justfiguringitout in reply to londoner0]

Just read your reply and can relate to much of what you said. I'm 44 and on a similar MOC path. Hysterectomy next week

[justfiguringitout]

Sending positivity your way HogM - I'm 44 and still getting my head around my recent stage 1c3 MOC diagnosis. I had emergency surgery on 30th Dec then received my diagnosis on 31st Jan, following biopsies.

Surgery again next week to de-bulk. Don't suppose they'll de-bulk my bum whilst they're at it 😜

[HogM in reply to justfiguringitout]

Hi

I wish you good luck for your surgery and hopefully caught early 🙏

Are you based in the UK

[justfiguringitout]

Hi yes, Midlands.

[justfiguringitout]

Hi HogM

It's been a while but I wanted to reach out and see how you're doing?

Lisa