Anyone have long remission/Ned. With high grade ppc?

[Zena41]

In another dark corner of chemo. Looking for some light.

[ScardyCat40]

Zena we are all very different and all respond to treatments differently so somebody's experience might not be yours but there are many women on this site that live PPC and have managed to do so for a few years.

At the hospital there is an excellent psycho-oncology dept and I have found really helpful in the past to be referred to them so I can talk things over. You can ring up your oncologists secretary and ask for a referral or even ask at your next appointment

[Zena41 in reply to ScardyCat40]

Thank you I need to speak to someone x

[Zena41 in reply to ScardyCat40]

Managed to live for a few years or. Remission?

[ScardyCat40]

They are a lovely team and have lots of experience of helping patients with cancer

[Zena41 in reply to ScardyCat40]

When I mentioned to my nurse how I felt she just said send Macmillan round to my house

[ScardyCat40 in reply to Zena41]

Talking to one of the Community nurses could help whatever is easiest for you

[Julie40 in reply to Zena41]

Zena I have heard mixed reports about Macmillan community support and it wasn't for me either.

It's only my opinion but I think you would benefit more from a one to one with a professional counsellor that will provide ongoing support and continuity xo

[Zena41 in reply to Julie40]

Yes I'm going to mention it today to the dr. No one suggests help to you. It's difficult to know what's out there xx

[Zena41]

I really don't know I just want some hope. 😞

[ScardyCat40]

I think having some form of counselling would really help you. I would grab every opportunity of help you get offered and don't be afraid to ask for more

[Spencer2016]

Zena- I have seen women on here with long remissions! They just don't come on the site that often because they are off living their lives. There is always hope! I was in a very dark place all through my first line treatment. I finally agreed to accept an anti-depression/anti-anxiety medication. It really has been a huge help. My mind is more clear. I feel I can think better and feel mentally a bit like my old self. Of course I still have those days when I get sad. But its nothing like it was before and just what I needed to fight through. I've even managed to get some of my sense of humor back. I would gently encourage you to explore this. I only wish I started them sooner. We should take full advantage of whatever tools or help is available.

Lots of love to you! And know there is always hope. ♥️♥️♥️

Anne

[Katmal-UK in reply to Spencer2016]

Great response Anne. Love the positivity :). Kathy xx

[Zena41 in reply to Spencer2016]

Thank you Anne

I'm just a newbie and pretty much clueless and hearing their are long termers in ppc.

I just thought it was oc.

My family are pushing me to anti depressants. But more drugs 🤷‍♀️

I am grateful of any positivity as I really have no one to speak to. My parents don't know the answer and it's breaking them.

Thank you 😊

[Kryssy]

Hello Sweetie. Guessed you were in a dark place as you've been quiet since your chemo. Would you try Cancer Support UK? We have Cancer Support France here and my personal counselor is Sue. We laugh and cry together and she's a great sounding board for me. Always full of good advice and never judges or lets me stay down for long - and I do go down sometimes, despite my usual jovial disposition.

Try this link - cancersupportuk.org/

My second chemo tomorrow so an early night for me. Let's see how this next one goes and hope the neuropathy doesn't get worse this time.

Speak soon honey. xxxxx

[Zena41 in reply to Kryssy]

Thank you sweet. Yes you know me very well.

Ps no neuro problems for me this time because of no taxol.

X

[Spencer2016]

Zena- i think the early days were the most difficult. Its very overwhelming. You will find most women generically refer to this as OC but that can encompass ovarial, fallopian and peritoneal. Its often difficult to determine which of those three places it originates, the cells and treatment seems to all be the same. I was initially diagnosed as PPC as that was my original biopsy (via fluid they drained). It wasn't until my debunking surgery that they were able to confirm OC (but suspect it started in fallopian tubes. That is one detail that is less important.

You have made a great first step finding this forum. The advice and support from these women have meant everything to me. It's not easy, but remember we are all going through it too. You aren't alone. Reach out anytime. And please consider the anti-anxiety meds. I wish so much I had been open to them earlier. Its not like the other meds. Once you get used to it there are zero side effects. Just more peace and calm in thoughts and mind. Reach out with any questions and stay away from google.

I'm sure we'll talk again soon.

Anne

♥️🙏🏻🌈

[sandirara]

I have heard many stories of women on the inspire site with stage 3c/ 4 high grade serous OC living for 6, 8 ,10 19 years. There is always hope and endless possibilities. Stay positive and don't listen to negativity or believe everything you read about statistics. We are all individuals. Be blessed

[Hidden]

Ladies,

Ye are giving me great hope having been told a sell by date of 6 to 12 months.

ANora

[Mopsie]

Hi

I had 2 years 6 months before my first recurrence after being diagnosed in 2013. Another round of chemo started November 2016 and so far feeling fine. Often have dark days but these need pushing to the back of the mind which is hard. I am sure you will be encouraged by all the help on this site.

Good luck and hugs.

Maureen xx

[Marieloiuse]

Hi Zena.

Just want to send you lots of hugs my sweet. I can only repeat what the other ladies have said and get in touch with with the professionals. And as another lady said the people for whom this is all behind them don't come on here!

I hope today is a better day for you and you can talk with someone.

I've been thinking about you.

Lots of love.

Catherine x

[IrishMollyO]

Hi Zena

My diagnosis in 2011 was high grade serous stage 3c PPC. With chemo only I had NED for nearly 5years when it recurred in my lymph nodes last year. More chemo zapped it again and if it comes back I will just get more treatment . Of course as the other ladies suggested seeing a psychologist is good advice. I have one attached to my oncology unit who has helped me through my dark times . In the meantime I hope my story gives you a reason to hope again. I'm sure there are women with longer remissions out there who are either not members of this site or who no longer take part.

In the meantime I wish you well with treatment . Another positive thing to hold on to is that high grade serous responds very well to chemo. Take care

XXX

[Zena41 in reply to IrishMollyO]

Thank you you have given me light again 💕

[Zena41 in reply to IrishMollyO]

Which chemo did u have ?

[IrishMollyO in reply to Zena41]

Carboplatin and Taxol first time and Carboplatin for second line .

XXX

[Emsymits]

Hi. I am a natural worrier and had anxiety etc for years since my kids were born. I gave in an started antidepressants. Thank god I did. They have enabled me to be objective and positive about my OC and treatment options. Don't get me wrong there are still days when I want to sit and drown my sorrows but I really don't think I could have coped without them.

You want to enjoy your life not let OC ruin your mental state too so I'd go for it.

Massive hugs

Em

X

[Julie40]

Zena I was diagnosed late with a very poor prognosis but one thing I have learnt on this journey is that we are all so different. I like you was totally freaked out at the start as I thought how could I survive this but I made friends on my first chemo with a very special girl who was stage 1 and chemo was a mop up but I on the other hand was the other extreme She had rare complications and sadly passed away I was heartbroken but I was with her right to the day she passed and she continuously said to me that I was not her and had to keep going I actually felt guilty for being alive. We shared the same wonderful Oncologist and he helped me through it too and reminded me that it was not my story and I had to focus on me What I'm trying to say is no matter how desperate things look and what the statistics say at what stage we are diagnosed HOPE is what we have to focus on as things can change for the better even in one day

PPC is more rare and because of that you won't find as many positive stories but that's not because they aren't out there it's just that we are the minority.

Please get support from the clinic as we can't do this alone and it will help

Sending love and a massive hug xo

[ZenaJ]

I wish I could give you a hug or that you lived round the corner. If you did I'd come and visit and when you see me you'd know there is always hope. You wouldn't know there had ever been anything wrong with me. You know I've been clear for a few years now and it can happen to anyone. Best wishes are sent your way,

Zena xxx