low grade serous ovarian cancer

[Gillianpickle]

hello I’m new to the group but I was diagnosed with low grade ovarian cancer in October 2020 and have since had a radical hysterectomy in December 2020 followed by 6 rounds of chemo starting in June 2021 which didn’t remove all the cancer I was given a course of letrozole but this didn’t work for me. In December 2022 I started a further6 rounds of chemo which has stopped the cancer growing but as low grade does not respond well to chemo I feel a little alone. There is a drug called Trametinib which is being used for this disease and my consultant has mentioned this could be a route for us to go, I wondered if anyone is currently on this medication and how they are finding it.

I am feeling well and hopeful but it would be good to find out if anyone else has this medication.

Gillian

[Alex29]

hello Gillianpickle, I was on trametinib for 2 years. The drug worked very well for me for the first year. I didn't have terrible side effects. I had a reduction of dose because the skin of my nose got horrible. After that, it was easy and I felt very well. Wishing you the best.

[Gillianpickle in reply to Alex29]

thank you Alex I hope you are keeping well x

[Artgreen]

Hi Gillian if you DM me I can signpost you to two Low grade ovarian cancer Facebook support groups and to a web site database that has an enormous information resource on various drugs and options . My oncologist was impressed by it as Low Grade is increasingly seen as a different disease.

Very best wishes

Alex

[Gillianpickle in reply to Artgreen]

Alex thank you so much

[Gillianpickle in reply to Artgreen]

please let me know how I can private message you I am new to this thanks

[Artgreen in reply to Gillianpickle]

I think it is the chat icon at the top of the page

[Gillianpickle in reply to Artgreen]

okay thanks

[joanbaez in reply to Artgreen]

Hi Alex With regard to your recent reply to Gillianpickle . I have just replied to her and saw your reply re face book groups and web site . I would be most grateful if you could also let me have this info . Thank you

[Mrs_Thomas in reply to Artgreen]

hi artgreen

Just seen you message can you send this to me please too.

Thanks so much

[Artgreen in reply to Mrs_Thomas]

certainly just direct message me so I can send you the details

[joanbaez in reply to Artgreen]

Hi Artgreen Following on from our conversation 7 months ago . I am now going onto trametinib later this month . Please could you let me know your experience of this and any advise you would give . also please could you let me know again about the 2 facebook groups you know dealing with low grade serous ovarian cancer . Thanks very much

[Artgreen in reply to joanbaez]

I haven’t taken it myself so have no personal experience I’m afraid. If you search Low Grade Serous on Facebook you’ll find there’s a Peer Support Group and another support group both are worldwide.

Wishing you the very best

Alex x

[joanbaez in reply to Artgreen]

Hi Alex,Thanks very much . I've found and joined the groups

Thanks Marilyn

[joanbaez]

Hi Gillianpickle Like you I have low grade serous , I am stage 4 , diagnosed Sept 2019 , major debulking surgery Jan 2020 .Mine is now in 2 lymph node areas . I did have 3 rounds of chemo prior to surgery but it did not work . I am currently on letrozole and interested to hear why that did not work for you. My consultant has also mentioned trametinib but is holding off at present as said needs

" more active growth " to get the most benefit of the drug . I would like to hear people's experience of this drug . My cancer markers are high , 637 ,but lymph nodes show no measurable increase of growth ? since last scan ,they are in region of 11mm. I am suprisingly active . Has anyone else such high markers ?

[Gillianpickle in reply to joanbaez]

Hi Joanbaez, thanks for your comments I am stage 3 but not in my lymph nodes. I had debunking surgery in December 2020 and that was followed in June 2021 with 6 rounds of chemo which was successful as it did reduce the tumour. I was prescribed letrozole in November 2021 and at my 3 month review everything seemed stable so I was put on a 6 month review and CT scan. August 2022 my scan showed the tumour has grown, I was still taking the letrozole until late November when I was referred for a further 6 rounds of chemo but at this point the letrozole was stopped. I had a scan after 3 rounds which showed the cancer was stable and it was discussed at that point they may put me back on letrozole, when the 6 rounds were finished. After my latest scan and consultation they said definitely not back on letrozole just leave things for 3 months and then another scan in July to see what is happening and at this point if needed we could discuss Trametinib. I can only guess that they think maybe the letrozole fed the tumour.

I am glad to hear you are keeping active as I do believe this helps your mental health when living with this disease

[joanbaez]

Many thanks Gillian . Yes, I agree! Keeping active is very important in keeping a positive outlook and looking after your mental health. In all the uncertainty we have to deal with it is fundamental isn't it .

Thanks for the information on your experience of letrozole . I hope your July scan is stable .

Best wishes

[joanbaez]

Hi , following on from our posts 7 months ago .I now am going onto trametinib later this month .just wanted to check how you are getting on .

[joanbaez]

Hi Gillian I've just been looking back to last year's posts and wondered how you are getting on now . I do hope things have been ok for you.

I am just about to start trametinib later this month and remembered we had talked about it and your consultant saying it may be something they could give you . Is it something you have experience of ?

Many thanks

Marilyn