Update

[Angie1412]

Hi just thought i would give an update. After consultant meeting 3 weeks ago they decided not to do anything about the cancer in the vaginal vault as it was small. They put me back on 200mg niraparib. Last week i had my usual appointment with blood tests to be told my CA125 has gone up to over 1000 from 600 3 weeks ago. They have now decided to do another scan in the next couple of weeks to see what is going on. I have had a pain in my right hand side for ages but they said there was nothing showing on scan. It would be nice to be pain free and have a good night's sleep. I was wondering whether it could be scar tissue. Just got to play the waiting game. Thinking of you all. Angie

[Lindaura]

Golly, Angie,

This is terribly disappointing news for you.

What a drag that this PARP Inhibitor is not working for you.

Are you BRCA positive?

It looks to me like you will need to get right back on Chemo.

Perhaps weekly Taxol is the way to go.

Many ladies here seemed to be able to tolerate that regime well and could function almost like normal on it and best of all, got good results.

Your situation is difficult for all of us, because we have been hanging a lot of hopes on Niraparib.

Please keep us posted and most of all,

Be well!

Hugs,

Laura

[Angie1412 in reply to Lindaura]

Hi Laura thank you for your message. I am BRIP1 - perhaps it doesn't work for this. I am hoping that others will benefit. I know chemo will be the next step. Take care. Xx

[Small_bump]

Ah I'm sorry to hear that Angie 😔 sorry I don't have any real practical advice but I just wanted to wish you the best of luck with the scans and with any treatment you need to have xxxx

[Angie1412 in reply to Small_bump]

Thank you. Just got to stay positive like everyone else. Take care xx

[Hidden]

Hi Angie

Sounds very familiar. I saw my consultant 4 weeks ago. Minimal increase in lymph node and omental thickening. Continue with 100 Niraparib.

Last blood tests showed CA 125 still rising. Developed bad pain left side and upper middle abdomen. Consultant arranging another scan.

Keep reading that CT does not show peritoneal seeding very well but she says another PET scan is not an option.

Best of luck with everything. It's very hard to think anything positive with this awful disease.

Best wishes

Janet

[Lindaura in reply to Hidden]

Hi, Jan,

Please post your story for us. It is really helpful to know each of our stories on this weird journey.

None of us planned to be here, but it is beneficial to learn from each other.

Thanks in advance,

Laura

[Hidden in reply to Lindaura]

Hi Laura.

Afraid mine is a long story. Diagnosed September 2016 from inguinal lymph node biopsy with stage 4b cancer of gynae tract. Lots of doubt and uncertainty re diagnosis and no primary ever found,but it was decided that it was most likely ovarian cancer and would be treat as such.

Started carbo/taxol/Avastin October 13th 2016.

Struggled with this so went to carbo only after 2 sessions. Still had problems so reduced by 25% for final 2 chemo.

CT showed NED at end of treatment but still did not feel well and put down to side effects of treatment

Had review and scan in February2018. Everything seemed okay but as I was still struggling decided a PET/CT was needed.

This showed peritoneal seeding, slightly enlarged lymph nodes in chest (2) and abdomen (1).

Back on chemo 6 rounds carbo and ct after this showed small reduction.

Went onto 200 Niraparib which seemed fine but ended up in hospital with low sodium, couldn't stop being sick and hallucinations.

Niraparib stopped for a month then restarted on 100.

Seems okay except CA125 is starting to rise and have developed pain in left side but CT 4 weeks ago said disease stable.

Consultant arranging another scan but as only scan to show anything was PET seems little point in it.

Suffered from constant nausea which seems to be eased by eating but waist and abdomen getting huge although scan shows nothing, but becoming very uncomfortable.

Asked for copies of CT reports so I could satisfy myself re position and size of lymph nodes. When I received them one suggests that it is cervical rather than ovarian.

Really confused.

Sorry such a long story.

Best wishes

Janet

[Lindaura in reply to Hidden]

Thank you for this horrific story.

Boy, it seems to me you really need a second opinion and to get yourself some further help, from your CNS?

Where are you located?

How is your support system?

Family and friends?

You definitely need real help!!!

Wish I could help,

Laura

[Hidden in reply to Lindaura]

Hi Laura.

Sorry for late reply. I am in NE uk with access to an excellent hospital. Family is brilliant although I have kept them at arms length as they all have responsible jobs, young families and I don't want them to worry. My daughter and daughter in law both have medical careers.

My husband is amazing. Very calm and unruffled. Turning out he is quite a good cook.

My mother is 93, has.dementia and is blind and deaf. Is obsessed by telephone but can only remember my phone number. Twenty calls a day to someone who can't hear is tiring.

Scan arranged for Monday. Feeling very tired and getting a lot of abdominal pain. Abdomen really swollen and tight, very uncomfortable.

Appointment with consultant on 27th. Seems a long wait at the moment.

Still managing to get about the house and walk the dog through woods every day (as long as it is not raining, she won't go out in the rain!)

Seem to be handling any Niraparib side effects quite well but unfortunately don't think it is working for me.

Fingers crossed!

Hope you keep well.

Janet

[Angie1412 in reply to Hidden]

Hi Janet I am in the same position as you. Abdominal pains, lack of energy. Have been on Niraparib since last October. Dont think it is working for me either.Had my second scan in three weeks on Tuesday and have an appointment with consultant on 26th. Hate playing the waiting game. CA125 has gone up over 1000 so know that something is lurking. Take care

Angie x

[Hidden in reply to Angie1412]

Hi Angie

My CA 125 was 41 three weeks ago, up from 31 three weeks previously. Highest it has been was 79 but went to 9 after chemo.

I don't seem to follow any criteria for what is going on.

My husband thinks it is all treatment related, wish I could believe that.

Scans not shown much so far so not confident about this one.

Hopefully you and I will both be proved wrong and this is just a "glitch".

Best of luck with your treatment.

Regards

Janet

[Lindaura]

Angie!

I just found this study for recurrence in the Vaginal Vault.

ncbi.nlm.nih.gov/pmc/articl...

It’s from 2015, so pretty recent.

They concluded that the best possible treatment is surgery!

After that would be Radio therapy or both.

Perhaps this can arm you for your next consultation of for getting a second opinion.

Hugs,

Laura

[Hopefulgal1]

Just want to send a big virtual hug to you. This is so crap “this disease sucks” as they say - I’m also in a similar boat with you all but we just have to keep in rowing...! Sending love x

[ellseybellsey]

Angie I would ask for a second opinion, my reoccurrence was in the vaginal vault and hemi of the diaphragm, I had the upper vagina removed as the tumour was 2.5cm and sticking to the bladder.They took samples of tissue for histology during surgery and they came back with deep section positive margins. I was already scheduled for chemo post surgery for the diaphragm, so I have my fingers crossed that the parp I am on keeps the buggers from spreading.

Ellsey xx

[Angie1412 in reply to ellseybellsey]

Hi Ellsey thank you for your message. They didn't suggest surgery but as my CA125 has gone up again and depending on what they find on the scan which is Tuesday they have said carboplatin would be the most likely chemo. Were you in a lot of pain? Take care

Angie xx

[ellseybellsey in reply to Angie1412]

Angie I had pain just below right rib cage. and then after going the toilet I noticed pink blood on toilet paper after passing urine. I waited a couple of weeks as I had 3 monthly review with oncologist and explained what was going on.

Ellsey xx

[Angie1412 in reply to ellseybellsey]

Hi Ellsey thank you for your message. I haven’t noticed any blood. My appointment for ct scan has come through for Tuesday but it will probably be another week for the results to get to my consultant. Hope you are ok. Have a good weekend

Angie xx