What further treatments?Ovarian Cancer - My Ovacome

My Ovacome

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What further treatments?Ovarian Cancer

Clipper15 profile image
9 Replies

I finished six months of paclitaxol in Feb. CA125 was 50. Recent bloods show a rise to 250. Oncologist sending me for a scan as I have symptoms. I am allergic to carboplatin and cisplatin . What other options are there for ovarian cancer?. I am brca negative. So worried. Xxx

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Clipper15 profile image
Clipper15
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Lyndy profile image
Lyndy

Hi Clipper15It’s horrible when you are worried but the medics seem to move so slowly, leaving you to imagine the worst.

I suppose further treatment will depend on where it is and the potential for surgery or radiotherapy plus other types of chemo…

You could ring your CNS if you have one and explain how worried you feel…I am guessing that you want to know that there’s something else..even if they don’t know quite what? Perhaps they may be able to put your mind at rest?

Don’t forget you can get a second opinion if you are not happy with whatever is suggested and/or you could look at trials too.

The Ovacome helpline is often helpful when you feel a bit stuck with worry. I find it helpful to blurt it all out.

Best of luck with whatever you decide xx

Cumbrianlass5 profile image
Cumbrianlass5

There is always hope and it is worth asking for second and third opinions. I was diagnosed in June 2020 and after first round of chemo I was told it was inoperable as cancers had got into various lymph nodes, including near my aorta which made an operation too risky. I thought my time was up but here I am, well and happy two years on.Second and third opinions agreed an operation was too risky but said I should be on a parp inhibitor. I too am BRCA negative and was on Nariparib, which worked well at first but stopped working after nine months.

I am now on caelyx through a picc line every 4 weeks for 24 weeks which seems to be working. I have had 4 of the 6 rounds so far. The cancers in my ovaries have not grown and the cancers in my lymph nodes have shrunk considerably, some by more than half.

I understand caelyx and taxol will be available to me if I have another recurrence in future.

My oncologist is looking into trials for me, at my request, and I am searching online for UK trials. I think it is good to look at all options.

I hope your oncologist finds a good treatment plan for your. If not, ask for a second opinion at a specialist cancer centre. My prayers and thoughts are with you. Waiting for treatment is horrid. Best wishes x

Clipper15 profile image
Clipper15 in reply to Cumbrianlass5

Thank you. Im in my sixth year! Not heard of caelyx. Maybe thats next! Yes, everything takes forever! X

Saffery1 profile image
Saffery1 in reply to Clipper15

Caelyx is doxorubicin x

organicinna profile image
organicinna in reply to Cumbrianlass5

Hello dear . Wow 24 round of Caelyx? They told me Caelyx works for people maximum 8 month and then they have to switch to other treatments. On Monday am having 3 round of 6 Caelyx every 4 weeks they prescribed, and scan in 2-3 weeks to see how it works. Yes they mentioned trials if this one not working. Am braca negative too. Diagnosed Jan 21 but had full debulk op and 6 carbo/taxols. Recurred after 6 moth 1st line carbo taxol/ As well something they found in lymph node and around stomach aorta.....CA 125 is just 24 they said....Do you still got your ovaries? Sorry for been noisy )) How do you feel on Caelyx? I feel OK but in the evenings my body is tired like I was training for London marathon ..... )) How you searching for UK trials ? Privat ones ?

Cumbrianlass5 profile image
Cumbrianlass5 in reply to organicinna

I think I have misled you. I am having 6 sessions of caelyx given every 4 weeks, which makes the treatment cover 24 weeks. I am not having 24 rounds of caelyx. Sorry if my post was not clear. Yes I still have my ovaries. Have never been able to have any debulking because they say an operation too risky. I feel OK on caelyx but also go very tired at night. I try to go to bed about 10pm and sleep about 10 hours every night. Just seem to need that much sleep. Before the diagnosis and various treatments I seemed to need only 5 or 6 hours a night. Searching any websites I can find, including contacting major drug companies direct. Best wishes to you x

organicinna profile image
organicinna in reply to Cumbrianlass5

OK )) same here - before needed 6hr sleep, now to bed at 10 pm and get up 10 am )))

Tillymint61 profile image
Tillymint61

Hi there. I have had second line chemo and now on maintenance. My question to oncologist us always 'if this doesn't work is there anything left in the bag ? I think it's natural as a patient to want to know although the medics seem to be happier saying 'well just let's see how we get in with this which isn't always satisfying and makes us think that's it, they aren't saying so there can't be any other options. However this is not always the case. Despite you having poor or no responses to carbo or cistplatin. There will be other options. This is from target ovarian cancer website : targetovariancancer.org.uk/....

Please ask your team,again to put your mind at rest.

Love and positivity.

Xx

Ruebacelle profile image
Ruebacelle

Worry not. Ma y choices out thrre tacol very effective gemzar caelyx etc

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