update after pet scan

[Roulasim]

I had my pet scan 3 days ago after an increase in ca125 but with clear scans-I have to mention that I am brca1 positive and I had been in olaparib for 27 months….my pet showed a reoccurrence-so what’s next?my doctor says chemo-I am afraid-disappointed and not in the mood to do anything-I am tired of trying-It seems pointless to me now.I am offered chemo and then what??i will wait till my next reoccurrence?i am also afraid that chemo may not work this time-please give me motivation and support I really need you.

[Lyndy2]

Hi Roulasim

Same position as you BRCA 1, on Olaparib for recurrence but it isn’t working so well. I got myself referred to the Marsden where I am hoping to join a trial of a new drug which is taken alongside Olaparib and does a similar job in a slightly different way.

My local hospital had also said chemo but I wanted to try something else xx

[Roulasim in reply to Lyndy2]

I hope you can join this trial and manage to avoid chemo-how long have you been on olaparib?

[Lyndy2 in reply to Roulasim]

18 months ish x

[Frannyfrank52 in reply to Lyndy2]

hi lyndy2

Do u know the name of the other drug on the trial you’re starting? I am in New York City. And wondering ? I’m in your position stage 4. Raised ca125. And on lynparza for five months which probally is not working well !!

[Nov5]

I am really sorry to hear that your PET scan has shown a recurrence. I can only imagine the thoughts and emotions you must be going through especially after the false reassurance of clear scans. Has your oncologist explained where the recurrence has occurred and why it wasn't revealed on the CT scans? How much had your CA125 gone up?Completely understand your reluctance regarding further chemo, but is there a possibility that further surgery could be considered? You may have already heard of the amazing Prof Christina Fotopoula, she works for Imperial hospital trust in London. Could you get a 2nd opinion with her perhaps if London is accessible for you?

I'm sure you'll regain your fight once this news has sunk in properly and you've had a chance to chat with your family and close friends. Please be assured that all the lovely ladies on this forum will be right behind you along with the Ovacome support staff. Give yourself time and be kind to yourself. Thoughtful regards. XX 🌹

[Roulasim in reply to Nov5]

thanks a lot for your support-it means the world to me.My ca125 was 8 in September-9 in October-18 in November-28 in December and now 80-I haven’t heard of the doctor you mentioned-do you have a personal experience with her?how can I contact her-are you aware?

[Differentforgirls in reply to Roulasim]

So sorry to hear this. Bless your heart.

Just wanted to let you know I had Prof Christina Fotopoulou for my second debulking surgery 3 years ago at Hammersmith hospital. She is amazing in everyway. I know she helps if she feels she can. I think it’s worth a go.

You take very good care please. Wishing you all the best xx

[Roulasim in reply to Differentforgirls]

could you please send in a message her email so I could contact her?

[Roulasim in reply to Differentforgirls]

I am looking through the internet and I can’t find a way of communication with her

[Differentforgirls in reply to Roulasim]

If you call Hammersmith hospital I’m sure they can put you in the right direction.

All the best xx

[Differentforgirls in reply to Roulasim]

Here are the contact details xx

Hammersmith Hospital details

[Nov5 in reply to Roulasim]

ovacome.org.uk/current-aspe... Roulasim, I'm sorry for delay in replying, but been out all day.

You will notice a link at the top of this message that will allow you to access a presentation by Prof Fotopoula. May help you make an informed decision about contacting her. I also noticed you had a reply from another lady regarding contact details. I would also suggest contacting the Ovacome support team as they will have more info on her.

Best of luck and let us know how you get on. XX 🌹

[kadabra12]

I've just had my 1st reoccourance and it really hit me this time to find I'd got go through it all again within 20 months. I have had a really bad time mentally and couldn't see a future especially after starting back on the chemotherapy which ended up me having severe reaction to carboplatin so only being able to have pakatoxil, then debulking surgery I really did hit rock bottom. But months later I'm now on anastrozole and can see a future. I had written myself off and mentally drained myself but im feeling more positive in this last couple of months .We just have to hang on there and do what we can to survive. Hopefully there light at the end of the tunnel for us all and we've got to live our lives as best as we can . Good luck x

[Roulasim in reply to kadabra12]

thanks a lot for your support and your kind words-the think though with me is that I have been fighting this disease for 10 years-it’s my third reoccurrence-deep down I had I hope that olaparib would hold me out of chemo for a longer period of time(I had thought of it as the magic pill-this collapsed in mind now) and I see myself out of options-that’s what disappoints me the most-that I lost hope-that it seems like the end to me…

[delia2]

Hi Roulasim. I am on Olaparib for 32 months and expect to find myself in your circumstances at some point. There are a lot of good trials going on now so maybe you can do one instead of chemo. I wish you the very best. You don’t need to give up hope yet! Xx

[Roulasim in reply to delia2]

thanks a lot for your support-the think though is I am in Greece and no trials are going on here neither my oncologist is aware of something like that-they only approach he suggests and knows is chemo-unfortunately

[Trickysite]

Is there an emotional support service where you can talk these feelings through? That might help you into a more positive mind. Also, can you access a second opinion? You have triumphed over this for 10 years . Your doc has a plan for you. It’s natural to feel emotionally exhausted but you have found the emotional strength before and with time will find it again. Be kind to yourself and take whatever support you can.

[Gartenfee]

Hi Roulasim, I completty understand your hesitation to go on to the next Chemo. I am BRCA2 positive and was incurable from the beginning in May 2019. I got an allergic reaction on Paclitaxel, so the treatment was Carboplatin/Gemzar and finished Chemo in november 2019. Olaparib helped only for 12 month. But in this time I travelled a lot, I am a keen cyclist. The next chemoround with Carboplatin/Gemzar started at the beginning of 2021 - after a scan has shown growth again - plus avastin. However my tumormarker raised from one measurement to the other,. This exhausted me and I was nearly at the point, where I did not want to carry on. Then I went for a long walk, climbed up hills and was happy. This was the turning point, when I decided to carry on despite my doubts. After the treatment the CT-scan showed shrinking tumors, stable disease. However the tumormarked continued to rise, while I was on Avastin. Therefore we came to the conclusion to finish this treatment in February 2022, when the tumormarker raised above 500. A scan showed growth in the lymphnodes. Whats next: Wait and see? I started to do a bit on own research and there I found a hint, that in certain cases Radiotherapy could help. I discussed it, with my oncologist and he agreed to have a PET-scan (which I had to pay myself) to make sure, that this is the only localisation, where the cancer is active. After this was clear, a radiotherapy was started, This therapy is one with less sideeffects, and started in April and finished in May2022, with very good results, which last until today. I recovered very quickly and had a wonderful summer, with lots of nice experiences in nature and cycled alltogether 4000km. However in November 2022 my tumormarker again was above 500, it had more than doubled in three month time, a clear indicator for progress, which was the case . The original tumor had started to grow again (I was inoperable from the beginning) and again I asked for radiotherapy for this area. And today I had my last session and it looks, as if had worked again. Really knowing I will in the end of March.

If you want to know more.:

The role of radiotherapy in epithelial ovarian cancer: a literature

overview

Giuseppe Carlo Iorio1 · Stefania Martini1 · Francesca Arcadipane2 · Umberto Ricardi1 · Pierfrancesco Franco1

Received: 9 April 2019 / Accepted: 28 May 2019

© Springer Science+Business Media, LLC, part of Springer Nature 20

Today the sun is shining, snow even in the lower regions. If you would ask me: I would not have liked to miss out the last years. And I really hope there will be much more time for me in a good life quality, an the time of treatments will only be short time episodes during a year. But you never know. I am 64 and live in Germany . And Radiotherapy is very rarely done. But may be it helps you. I hope you'll find a good way for yourself. Cheers

[Summergold2 in reply to Gartenfee]

that sounds amazing My cancer is in the lymph nodes. Done 3 different combos of chemo and Avastin and a parp all which didn’t work well. I am on my 4th reoccurrence ca125 doubled in a month. Iwillask about radio therapy….I am in the states and was told they cannot give me more chemo. Worried about throwing my body into leukemia. So only option I was told is to go through a trial

[Gartenfee in reply to Summergold2]

Summergold. I described it, because I know it is not common knowledge. That was the reason why I have posted the interesting result of the review. This possibilities needs in my view greater attention. I was the first which got radiotherapy in more than 20 years in this praxis and we are so happy it seems to work, at least for a while. Cheers and good luck

[Nov5 in reply to Gartenfee]

So inspiring ✨️

[Pooshon]

Please try not to worry about what happens next, you’re unable to enjoy today if you worry about tomorrow.

You’ve done so well being controlled on Olaparib for so long. I’m not eligible for a PARP as my second line chemo didn’t work but I’m making the most of every day and trying not to think of the future too much.

I know it’s not easy but just try and be grateful for all you have.