Question to anyone with ovarian cancer

[ingrid48]

I'm in the US

I have stage 4 and on Zejula. I posted previously

Been surviving going on 8 years with this Cancer.

( had another stage 4 30 yrs ago- I'm 70)

Many of u mention stage 3C. I never heard it call that way. Anyone know the difference?

[Joanie12]

Hi Ingrid from england. Wow, you have done and are doing fabulous. I'm stage 4 also, 18 months since diagnosis and just finished 2nd line chemothe for recurrence. Very positive though and soon going on a parp! Keep going Ingrid and thank you for posting your message, gives hope and inspiration!! Joanie

[ingrid48 in reply to Joanie12]

Thank you!

Yes, had several lines.. Avastin, platinum, doxorubicin, lynparza, back to platinum, reacted.. Now as of this Am on Zejula.. Went from.3000 ca125 to almost zero through the Years... Just bk to 280.. Doc said God doesn't want me yet...LOL..

So I tell everyone to keep fighting and eating dark greens!!

Ingrid

[Arizona_Jane in reply to ingrid48]

Thank you Ingrid for your great story! You give us hope and inspiration! 💕

[Wanthealth in reply to ingrid48]

Thank you for the encouragement hugs

[Yoshbosh]

Hi Ingrid,

I don’t know if this will explain it clearly enough, but this link explains the differences in the Stage 3 diagnoses: cancerresearchuk.org/about-...

I hope you are doing well on Zejula.

Vicki x

[ingrid48 in reply to Yoshbosh]

Thank you.

What I find strange is I never had cancer in the ovaries. It was found by pure luck.. Or not.. In the peritoneum during A different procedure. It was already stage 4!! That was 2011!! I went through all lines of chemo and up and down ca125..

[Hidden in reply to ingrid48]

Hi Ingrid48

Your story is amazing. I have stage 4b cancer of "gynae tract". This was diagnosed in September 2016. Like you no cancer was ever found in ovaries just a lump in the groin which they thought may have been a hernia turned out to be an infected lymph node showing stage 4b cancer.

The only time they have seen anything was on a PET scan which showed a couple of slightly enlarged lymph nodes in groin and chest and a few seedlings in peritoneum.

Two lines of Chemo later I have been taking Niraparib (zejula) for 6 months. Had one dose reduction (down to 1 tablet daily) and doing reasonably well.

CT Scans show no problems, but never really have. CA 125 starting to creep up , still only 31 but never been higher than 79 and was 12 when started tablets.

Like you plenty of fresh green veg and crossed fingers!

Lots of luck for the future.

Janet

[ingrid48 in reply to Hidden]

Thank I, same to u!

I had a hernia in 2011! That's how they found it. I was at over 3000 ca125 stage 4

Went to a low 7. Now at 280 after some years of nothing and some returns.. But I'm also 70 and thankful and active!

What I don’t understand are the letters after the stage.. like 3C or in your case 4b

Here in US they never mention it.. Just a numbef

[Hidden in reply to ingrid48]

Hi ingrid48

Hope this answers your question. The b diagnosed for me was because they found it in the groin lymph node.

Stage 4 ovarian cancer means the cancer has spread to other body organs some distance away from the ovaries, such as the liver or lungs.

It is divided into 2 groups:

Stage 4a means the cancer has caused a build up of fluid in the lining of the lungs (called the pleura). This is called a pleural effusion.

Stage 4b means the cancer has spread to:

the inside of the liver or spleen

lymph nodes outside the abdomen

other organs such as the lungs

Regards

Janet

[ingrid48 in reply to Hidden]

Thank you!