Maintenance therapies?

[SueLR]

Hi Ladies,

I've been looking around at research about remission before I see my Oncologist later in the month. I finished my first round of chemo about a month ago, and had debulking surgery in January.

I don't want to be laughed out of the room by quoting research that isn't generally accepted, so thought I'd run my question by you all first (figuring you won't laugh at me!)

Does anyone know anything about maintenance therapies? Are they offered to prolong remission? I've heard about Tamoxifen, but took that for 5 years after breast cancer and hated the side effects. I read that Fulvestrant is an alternative with less side effects. The other thing that seems to be quoted is PARP inhibitors, specifically Olaparib.

Is anything routinely offered, and does anyone have any experience of whether they work? Is there anything else? Should I be asking for anything at all, and if so, what? (Appreciating you don't have either my medical records or a crystal ball!)

Thanks so much for your help.

Warmest wishes

Sue

x

[BusyLizzie]

Hi Sue,

What a great question.

Interestingly on the live chat session the following question was just asked (see tweetings' blog about live chat) - perhaps it was you:-

Q. Please can you tell us whether there is any kind of maintenance treatment that can be used for ovarian cancer, similar to Tamoxifen in breast cancer?:

A. Increasingly, ovarian cancer researchers are exploring maintenance approaches - at least 3 large randomised clinical trials have shown beneft from maitenance approaches, although some trials ahve not confirmed those findings. The current situation is that there is evidence that a medicine called Avastin can help when given in maintenance phase to some but not all patients with ovarian cancer.

Depending on how fast (or if) it comes back and where usually influences the next treatment. It could be more surgery or the same or different chemo.

There is a wonderful recent discussion about what treatments we have received dependant on where we are located in the below link:-

ovacome.healthunlocked.com/...

PARP inhibitors are at trial stage only, but are very exciting. Your cancer would need to be tested by the genetics clinic to see if you have a BRCA1 or BRCA2 alteration (which usually means you have familty history of ovarian, breast and/or prostate cancer). If you do, then you would likely want to apply to go on the trial as it has been very successful.

Most women on here do very well and get a remission from first line chemo (carboplatin and taxol usually), but I did not. Make sure they are tracking your CA125 and going to scan you half way through. From my experience I would ask, if your CA125 is not back down to normal after 3 cycles, what action will they take? You want to hear that they will consider switching to something like weekly taxol.

Good luck.

Love Lizzie

X

[SueLR in reply to BusyLizzie]

Hi LIzzie,

Thanks for this. I have had my first set of 6 chemos with an op in the middle, and my CA125 has gone right down from 1200 to about 12. It wasn't normal after 3, but fell right to 25 after the surgery.

I do have the BRCA1 gene.

I had read that Avastin was only approved for first line treatment, so wasn't going to ask about that, so it's useful to know that it is used on other occasions.

[SueLR in reply to SueLR]

Sorry, pressed the wrong button!

Thank you so much for the information. Now I know it isn't a stupid or unreasonable question, I'll feel more confident asking it.

I'm sorry you didn't get a remission from your first line chemo.

Warmest wishes

Sue

[chatt2]

Hi SueLR

Please do not feel stupid about anything to do with your illness ask your consultant anything you feel may help you if it worries you then ask .I'm stage 4 have had my first line of treatment and debunking op and now on Avastin every 3weeks and my CA125 is 10 and have been in remission for almost a year ,they are developing new treatment all the time so ask away as to what would be best for you

Good luck

Sandra

[Hidden in reply to chatt2]

Welcome to the site! Hoping you find it helpful.

Just a tip: check when a post was written - after the writer’s name - before replying. Unfortunately, some women are no longer with us and it can be upsetting to be reminded of that.