Update post - let your forum friends know how you are doing (Autumn 2022)

[OvacomeSupport]

Hello All

It's that time of year again in the UK when the clocks change, which means it's time for an update post which we will pin to the sidebar. This was requested by forum members who might not regularly post, as an opportunity to drop in and keep you updated.

If you haven't posted for a while but would like to let your forum friends know how you're doing, please do leave an update in the comments below. You are of course always welcome to start a new post with your news, but it won't be pinned so may get a bit lost on such an active forum.

It will be great to hear how you're all getting on.

Best wishes

The Ovacome Support team

[doodoolatrice]

Hi all, I'm a low Grader, living with this disease since 2012. I've had two lots of chemo previously, carboplatin followed by carboplatin and placlitaxel and various hormone blockers. My local Oncologist was scratching her head as to what to do with me this time last year, so I asked to be referred to the Royal Marsden a s I knew Dr Banerjee was an expert in low grade and they did clinical trials. I'm currently on the Aliftus Trial which is showing encouraging results for now. I don't know what I would do without this forum as day to day I slap a smile on my face and just get on with it for those around me, but underneath I am struggling as ive gone from being such an active person to someone who can't work and can barely get up the stairs some days , so it's nice to offload and speak to others who understand. Thankyou each and everyone of you, including the Ovacome Team as well, Kerry x

[Horsesrock]

Hi All, still here! But still struggling to get to remission (non stop chemo since diagnosis March 2021). PET&CT scan tomorrow and if things don’t look too awful I’m going to take my chances at a clinic in Spain with more personalised treatment. As always I wish us all strength and luck dealing with this pesky disease. It’s good to see more campaigns to raise awareness… it’s a start. ❤️ To you all.

[Lovedogs41 in reply to Horsesrock]

Hi I would love to know the details about the clinic and treatment you’ve researched in Spain please x

[Veria in reply to Horsesrock]

Good luck tomorrow….please let us know about the clinic in Spain that you refer to.

I am also struggling with chemo at the moment.

Good luck. Xx

[Morini]

NED since earlier this year and on Avastin. I'm coping with joint pain and trying to do nice things, like ride my horse, UK holidays and work part time in the job I love. I've been struggling more because of bereavements this year. This forum has really helped me have hope and get through treatment more positively xx

[Veria]

hi everyone, I am low grade, diagnosed in 2019……at present on second chemo of carbo/caelix, it has not been an easy ride, admitted to a&E twice with hight temp. Lets see how the second round goes next week.!!

Sending love to everyone. Janet xx

[carrotmunch5]

Hi my name is Norie, I was diagnosed clear cell OC 3b in 2019. Had 2rounds of carboplatin and placlitaxal, but didn't work. My cancer was platinum resistance. Had lots of blood transfusion due to lots of blood loss until my surgery. Had my surgery in 2020 January, cancer came back and spread after a three-four months although surgery was successful. I have been on clinical trial since 2021 January. But I am still here and had ablation on my one of tumours on liver in August this year. Someone mentioned earlier, I was very active person before this disease took over, now I find challenging getting upstairs and hills, out of breath quickly, fatigued etc. Still, I am grateful for each day I have. And grateful for people on here give me strength and courage. Xxx

[Nicky100 in reply to carrotmunch5]

Have you tried Hyperbaric Oxygen? I found it helped hugely with fatigue, It’s pretty amazing. x

[carrotmunch5 in reply to Nicky100]

Just saw your reply, thank you, I'll look into it. 🙏❤️

[Towergirl in reply to carrotmunch5]

hi am new. My ovarian cancer has returned after 4 years to two sites on Liver and above Spleen. On 3rd cycle of Chemo and depending on results my have to have another debulk operation.

Can I ask what is ablation of liver?

[carrotmunch5 in reply to Towergirl]

Hiya. Welcome to the forum😊I am so sorry to hear your cancer came back and going through this again... We are all here when you need.

Ablation...Basically they had a small incision where my tumour was, then insert thin needle-like and "burnt" it. They used ultra sound to navigate the operation 😊. It was the only one growing, so I took ablation option. It was a day surgery and less invasive than chemo. Since then, my liver is doing well and stable. No reoccurring. Sending you lots of love and healing light❤️

[Towergirl in reply to carrotmunch5]

thank you it’s helpful to know what is available. Finding it hard to understand /find treatments available for metastases cancer.

[carrotmunch5 in reply to Towergirl]

There are different options available. When I was offered ablation, there were other options, which one of them were chemo😅 . Just thought of back to chemo didn't feel good. I still have tumours, but they are stable. Always there are options for metastatic cancer. Also clinical trials. I have been on clinical trials since 2021. They did ask me if I wanted to try different one, but drug I am on now seem to be ok. Might try different one if something happens😊

[Towergirl in reply to carrotmunch5]

good to know thank you so much. Options other than debunk of spleen and fatty area is all I’ve been offered. Trials haven’t been mentioned. I will ask now.

Good to hear you are stable and coping well.

[carrotmunch5 in reply to Towergirl]

Thank you. Always good to know there are options. And different doctors come up different options. Sometimes one hospital don't have a clinical trial which suits us, there might be other hospitals might have clinical trials going. ❤️😊🙏

[OvacomeSupport Partner My Ovacome Team in reply to Towergirl]

Hi there Towergirl

You mentioned that you're finding it hard to understand or find information about treatments for metastatic ovarian cancer. I just wanted to share some Ovacome information resources that may be of interest to you:

- ovacome.org.uk/recurrence

- ovacome.org.uk/treatments-f...

- ovacome.org.uk/secondary-su...

- ovacome.org.uk/clinical-tri...

We can also send these to you in the post, free of charge, if you prefer?

I hope this is useful. If there's anything you would like to talk through with a member of the Ovacome support team, please don't hesitate to get in touch. You can reply directly through this forum, email us via [e-mail] or call our support line on 0800 008 7054. We're here Monday - Friday, 10am - 5pm, to help with questions, provide information resources, or just have a friendly chat about anything that's on your mind. We can also help plan or prepare for upcoming medical appointments if you think that may be useful too.

Best wishes

Annie - Ovacome support

[Towergirl in reply to OvacomeSupport]

please may request that I have this posted to me . thank you

[edited by Ovacome Team]

[OvacomeSupport Partner My Ovacome Team in reply to Towergirl]

Hello Towergirl,

Yes of course, we would be very happy to do this. Just to let you know, I have taken down your address to protect your privacy, however, I have made note of it and we will get these resources posted to you.

Best wishes,

Cathryn - Ovacome Support

[Balletchick12]

Hi There, I am HG since July 2022. 4 rounds of chemo so far (Taxol and Carbo) and scheduled for surgery (TAH, BSO and Omentum) on 15 November.

[Hidden]

Hi

Stage 3c, HGS OC.

Diagnosed 2016.

Had chemo & debulking and stayed clear for 3.5 years. Had small recurrence, more chemo. Then went on Olaparib and am 2.5 years down the road from that.

It’s a hard road but I know I’m lucky to still be here and still ready to fight on x