Update

[Angie1412]

As posted before i have been on Niraparib for about 6 months. I had my results of my CT scan this morning and i now have cancer of the vaginal vault. Has anyone encountered this? My CA125 has gone up to 600 so they have decided to stop tablets and will review my next steps at their meeting on Friday. It will be chemo of some sort. I know that Peritoneal cancer is not curable but i did hope to have a few months chemo free. I am in my third year. Xx

[Katmal-UK]

Hi Angie

No experience of this but wanted to give you a big virtual hug. Hopefully someone will be able to offer some advice. A recurrence is never easy. xx Kathy xx

[Angie1412 in reply to Katmal-UK]

Thank you just got to stay positive like everyone else on here. X

[Welshandproud]

You are quite right to hope for a few months break and I'm so sorry that you haven't got it. I'm afraid that the vaginal vault is another part of my anatomy I had no idea that I had but I do have primary peritoneal cancer. I am on chemo for my first recurrence at the moment but know there are a number of chemo treatments available. Try to keep your chin up and then let them blast the buggers with the best available chemo big guns. Sending you lots of love xxx

[Angie1412 in reply to Welshandproud]

Hi they do say that it can happen after a hysterectomy and in women over 60. As soon as i turned 60 the health issues started. What fun!! Hope you are managing with the chemo. Thanks for your message. You never feel alone on this forum. Take care x🌻🌻

[Welshandproud in reply to Angie1412]

Thank you. Yes this is a lovely group xx

[Hidden]

I’m sorry to hear that. I’m also sending a hug. 🤗 There will be treatment options. I hope they come up with something that’s not too severe. Keep strong 🤗🤗

[Angie1412]

Thank you for your message. This time round I feel so different in my attitude to it. I have told work i don't want them to pussyfoot around me. I felt sad this evening as my 28 year old daughter came round and she was heartbroken. She is usually so so strong for me. I felt guilty because i didnt cry. I think i have hardened to it. This is my second recurrence. Xx

[Mptelesca in reply to Angie1412]

Hi, Angie. I know how hard it is to explain to your kids about a recurrence. My family was sure it would never come back, but, it did. They were going on the fact that the surgeon came out and said he got it all. None of us fully grasped what OC is all about. Just coming out of my first recurrence and I'm heading toward a second. My attitude is different too. It's like...let's get this show on the road. Blast me with everything. Problem is as aging takes over...so do the side effects. But, we are strong and we are going to fight this effing fight.

It's a whole new world of different treatments out there. Wishing you the best! Stay strong!!!

XOX

Marisa

[Hidden]

Hi Angie, this disease never stops gifting to us. I am sure your team will come up with a plan. Of course its devastating and it is hard on our families to see us getting ill again. Hope the next treatment is successful and will chase the buggers away

[Angie1412]

Thank you. The support on this forum is wonderful. It is like an extension of the family. Take care xx

[Maus123]

Right.. of all the possible places to settle down on, the tumour cells had to choose the vaginal vault. Sometimes OC just baffles me.

Truth to be told though, I don't have any experience with this so can't say if it's a more or less difficult site to treat (only know someone with vulvar cancer but that's different) . Let's just hypothesize that it will be very responsive to treatment and you will get rid of it quickly!

I'm sorry you find yourself in a recurrence though and have to stop the parps. Best of luck with treatment. xx. Maus

[Angie1412]

Many thanks. I hope you are doing well. Will see what the consultant has to offer on Friday. Take care xx Angie

[IrishMollyO]

Hi Angie

I'm sorry you have had this news but you will rise above it again. I'm having chemo for third time in nearly 8 years for high grade SEROUS PPC . It does respond very well to chemo and I'm hoping all this chemo will be successful again. Stay hopeful. Take care

X X X

💕

[delia2]

I'm so sorry for your recurrence, but I hope your treatment will be tolerable and will do the trick! It doesn't sound like a fun location for the cancer to choose . . . I wish you the best! xo

[Craft1]

Sending hugs x

[ShropshireJo]

So sorry to hear about this recurrence. Can’t offer any practical advice but just wanted to send my love and a gentle hug. We’re here to help you through the next treatment. Jo 🌺🌼🌸🌻🌹

[Angie1412 in reply to ShropshireJo]

Thank you. It is nice to know that there is so much support. Take care

Angie xx

[Hopefulgal1]

I too just want to send support - it’s heartbreaking when family is so affected too. I’ve been through this 5 times now so my daughter ( now 25) is possibly gettting more used to me being in chemo etc. I So hope your team can deal with this new ovcurance swiftly and as completely as possible! Xxx sending a big hug 🤗

[Angie1412 in reply to Hopefulgal1]

Thank you xx

[Lindaura]

Dear Angie,

I am so sorry to hear about your recurrence.

Selfishly, I am wanting Niraparib to become our magic bullet!

So, are you BRCA positive?

I wonder if cancer cells are harder to reach inside the Vaginal vault as so many ladies do report recurrence there!

It is a dreadful situation.

I just hope your new Chem regimen knocks it out.

Hugs,

Laura

[Angie1412 in reply to Lindaura]

Hi Laura thank you for your message. I think any new drug is a bonus but I think it will take time to collate all the pros and cons. I am BRCA negative but I have the BRIP1 gene. I am hoping that it is contained enough to be offered radiotherapy. Hope you are ok.

Hugs

Angie

[Lindaura in reply to Angie1412]

Thank you, Angie,

So disappointing for those with the BRIP mutations ‘

Best wishes,

Laura

[Maxjor]

Dear Angie--sorry to hear this and wanted to offer perhaps a question about next steps for you. If the cancer is only on your vaginal vault, I did read of some ladies who had radiation for that one spot and no chemo but the lesion was self-contained --no spread to surrounding tissue. When I recurred (but then not on a PARP) I had it on my vaginal vault (as well as other places) and they gave me Carbo/Caelyx which I found mostly manageable. I started a PARP after that treatment. Then was (am) NED. Sending a hug and hope you will keep us updated. oxoxo Judy

[Angie1412]

Hi Judy thank you for your message. I am hoping that the meeting on Friday will agree to radiation. I had Caelyx for my first recurrence which I found bearable and my Ca125 went right down to 13 so I was able to take Niraparib. Unfortunately it doesn’t seem to have worked for me. Fingers crossed I will get back on track. Take care xxx Angie

[Irisisme]

Hi Angie, I recall my surgeon mentioning my ‘vaginal vault’, it sounded like a deep, dark cave. It seems the cave can have monsters hidden in its depths. I hope treatment kicks the Hell out of your monster.

Good Luck 🤞🍀❤️

[Angie1412]

Hi Iris thanks for your message. I had never heard of it. Can't they lock it away and throw away the key!!! Take care

Angie xx🌻

[Rlenesue]

So sorry to hear this, Angie.. I do hope chemo will turn it around for you as niraparib is not working for you. Kisses and hugs xxxooo arlene