Any advice about future treatment?

[Riverflo]

Good morning sisters,

I am at yet another crossroads and hoping for some advice. Diagnosed stage 4 high grade serous Jan 2020, had two surgeries, three courses of chemo (in total), short lived Niraparib, failed clinical trial (PICCOLO). So now having the 6th and final chemo of this third course ( Carboplatin and Gemcitabine). And I think my oncologist will just offer "watch and wait" when I talk to him.

Has anyone had a similar pathway and been offered treatment at this point? I live in Spain and although I speak some Spanish and the healthcare here has been good, I feel isolated in moments like this and am so grateful for the supportive community that you guys offer.

Love and best wishes,

Martine x

[Caleda4]

Hi Martine,I have had 1 lot of surgery, 3 courses of chemo, parp.rucaparib over approx. 16monthsafter which it stopped working. I have high grade serous fallopian tube/ovarian type I have been on watch and wait since August 2022 & recently had a scan,which showed that the lymph node has increased and the CA125 is currently 62. However I have been advised to stay on watch and wait,until I get symptoms. It has been mentioned that Avastin should be the next step,however it is not available on the NHS at my stage of treatment.

My journey started in September 2015,and at present feel very well.

Take care, Caleda x

[Riverflo in reply to Caleda4]

Thanks Caleda,Unfortunately I can't have Avastin due to thrombosis and a fistula. Interesting that they advise watch and wait until symptoms. I suppose it gives us some quality time before the next onslaught of treatment.

Hope you have a long wait. X

[Lyndy2]

Hi Riverflo

Watch and wait may not be a bad option. You have had a lot of treatment during your journey with this disease and it might do your body some good to have a rest.

If you are feeling a bit isolated you may feel safer if something is happening but they can still give you chemo again when it’s needed and you can have a bit of normality for a while.

You could also use the break to see what the options might be going forward.

Whatever you choose to do, I hope things go well xx

[Riverflo in reply to Lyndy2]

Thanks Lyndy,You're right, a break would feel good, I just hope it can be a long one. X

[Kaitlinsmum]

I know you are a long way from UK but you may like to be an online member of Sam's Diamonds, a cancer support group for women. We support each other in facebook chats and meet up for activities. I joined during covid and never met anyone in person for about 18mnths but chatted on phone and fb to Sam and other ladies. We try to stay upbeat and positive. Look for them on their webpage to find out how to join. Feeling less alone on your journey really helps. Good luck x

[Riverflo in reply to Kaitlinsmum]

Thank you so much!! Didn't realise how much I need that until your response made me cry. Will look on the webpage. See you there xx

[monkeytwo]

Hi Martine,

I'm so sorry to hear this but unfortunately know how you feel due to my own recent bad news. I can only share what I'm now doing. At the moment I'm waiting to hear from my oncologist whether I'll be given more chemo to keep my cancer at bay or a drugs trial at the Marsden.

Whilst I wait I meditate at least twice a day and for longer than I did before, go for long walks, make sure I laugh a lot. I ate well anyway but the last week since I heard my news I've really upped my game on the vegetables. I make sure I eat no later than six at night and have sixteen hours then before breakfast. My friend who was a former chemo nurse twenty years ago tells me that if we leave a massive gap like this the body can then get on with the other 'housework' such as cleaning up cancer cells. I'm finding if I look to self and not just what the oncologist says then I'm a lot calmer.

The very best of luck to you xxx

[Riverflo in reply to monkeytwo]

Thank you for all your advice. I have heard a lot of good things about longer overnight fasting and try to eat dinner earlier but haven't commited to it fully. It's really interesting that this was understood twenty years ago. I will take it more seriously.Usually I eat healthily (nausea permitting) and include plenty of vegetables and pulses. I had followed a vegan diet but recently stopped because it felt like I wasn't getting everything I needed in spite of supplements.

Perversely, the spiritual aspect of my life has lessened since diagnosis, during the times when it would have benefitted me most. Regular meditation and looking inward has helped greatly in the past and I want to return to it. It really helps to be reminded about these things so thanks once again.

I really hope that your oncologist makes the best choice for you.

Best wishes, Martine xxx

[OvacomeSupport Partner My Ovacome Team]

Dear Riverflo,

I can see that some of our lovely members have replied with some helpful information.

I wanted to share some information about diet and intermittent fasting that you may find helpful. This blog post summarises some of the theories behind it and evidence base that we have to date: ovacome.org.uk/intermittent...

I'm sorry to read that you feel isolated, so I also wanted to let you know that our online support groups are absolutely open to you attending from Spain. Whilst the healthcare system may work slightly differently, the groups we offer will still allow you to connect to others who are in a similar situation.

You can see the list of workshops and support groups we provide over Zoom here: ovacome.org.uk/Pages/Events...

Best wishes,

Jo

Ovacome Support

[Riverflo in reply to OvacomeSupport]

Thanks Jo, I have signed up for your afternoon support group this Friday 😊