Orlaparib

[CallmeMum]

Hi lovelies,

Hope you’re all okay?

Just a quick question can you get Orlaparib if platinum resistant and BRCA negative?

Also how do you get on with a stoma bag if you have one?

Xxx

[Yoshbosh]

Hey lovely,

From my understanding, you might be able to get Olaparib even if BRCA negative, but you aren’t likely to if platinum resistant because it is for platinum sensitive disease.

As for the stoma, is your special person facing one? I may require surgery and have been told that I’d most likely end up with an ileostomy 🙁

Lots of love to you both.

Vicki x

[CallmeMum in reply to Yoshbosh]

She’s now on single line Caelyx so we’re looking at all options and is incontinent we’ll see though she was completely against it but I’ve said to her this might be the option to beat the cancer at its game rather than consistently ending up in hospital with constipation and not being able to go to the toilet for days on end. How are you? Xxx

[Neona]

I have an iliostomy. My main problem is itching but otherwise it is reasonably easy to manage. Much better than dealing with incontinence I should think.

[CallmeMum in reply to Neona]

I’ll definitely be looking into it, but we want her to have as much dignity with this disease as is possible and if that means a stoma or something like it that’ll be the better option xxx

[Eriksendi]

I have a stoma, a colostomy. I’ve had this for 18 months. Generally I have managed very well after the initial shock, however, I do have scar tissue issues at present. It hasn’t stopped me doing anything, walking lots, cycling, swimming. Not nearly as bad as I feared.

[Lily-Anne]

I’m platinum resistant and brca negative. My oncologist said requirements are serous grade 3 and last successful chemo at full dose within last six weeks. My tumour doesn’t meet the minimum requirements

If you need any stoma questions answering feel free to drop a message

LA xx

[Lou53]

I am BRCA negative and platinum resistant (this Christmas I recurred two-thirds of the way through Cisplatin and Gemcitabine). I am now on the OCTOVA trial which opened up to BRCA negative women at the end of December. It has 3 arms:a) Taxol, b) Olaparib c) Olaparib and Cediranib. I am 6 days in to arm c. Ask about the trial. I think it might be the only way to get a chance of Olaparib if you are platinum resistant.

I'll post separately about it so others know it's there as a possibility.

Best wishes,

Louise

[Margiedolly]

Hi! I'm platinum resistant and have been on Olaparib going on 5 years with an average ca-125 of 8.6.

I'm also BRACA2, but I know non BRACA women who have used Olaparib.

Best wishes!💖Margaret