Olaparib : My Oncologist rang yesterday to say... - My Ovacome

My Ovacome

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Olaparib

My Oncologist rang yesterday to say that my blood test for BRCA had still not returned as he hoped, I have now missed the starting criteria required, you must start with 8 weeks of your last chemo cycle. It could be that I am not BRCA positive, but am now on "watch and wait" which in its self is a scary place to be! I am obviously very grateful to have gotten thus far but have a fair amount of wobbles recently, whilst putting on a brave face for the family......who all seem to think I have been miraculously cured. I have decided to leave them in there ignorance as it really is bliss!

N.B. Doctor told me that this month if you are BRCA positive Olaparib is now available for first line maintenance via the NHS.

13 Replies

Dear Lyn,

It is criminal that the BRCA test is not given to every OC patient as soon as they are diagnosed.

You are certainly in a difficult place, but if you are NED right now, there is no reason to think you might stay that way for a good length of time. I was pretty disappointed to have a recurrence within 6 months, but we acted immediately as soon as my CA-125 started to rise and I think that’s important for us, to keep the cancer from invading any organs.

My latest chemo, Carbo/Caelyx, has been much easier to take and it is destroying all the new cancer, so I will be ready for Niraparib at the end of this.

So, try to enjoy your recovery, with your new curly hair coming in, and building up your strength with walks and healthy food.

Hugs,

Laura

coksd profile image
coksd in reply to Lindaura

Hi Laura did you get a second platinum treatment after recurring within 6 months. The reason I am asking is because I was refused it at one hospital deemed platinum resistant as I recurred just under 6 months of Carbo/Taxol and I went for a second opinion at another hospital went on cisplatin it turned out I was platinum sensitive and now I am on Olaparib. Thanks C xx

Lindaura profile image
Lindaura in reply to coksd

I did get Carboplatin and Caelyx, just no Taxol.

I don’t understand why I can’t get Olaparib, but I will settle for Niraparib.

Thanks and hugs,

Laura

That’s so frustrating for you and also for your oncologist 😔.

Watch and wait isn't ideal but at least there’s the watching element involved which can only be good. If you are symptomatic or if the bloods get silly at any point I’m sure they’ll be ready to bring on the big guns for you.

I totally understand the leaving your nearest and dearest in ignorance and wobbling on your own, sometimes we just don’t have the strength to hold them up as well as holding ourselves up do we? We all get twinges and odd feelings and can you imagine if we shared them all all the time, we’d all need a permanent room at our local hospitals, I have a hubby who has a slight tendency to over react, it comes from love but sometimes 😬😬.

Enjoy your treatment free time lovely ❤️Xx Jane

So frustrating Lyn , mine CNS kept on about the gene test until I was counselled and signed the forms and it did take about 8 weeks to get the results .All of the clinics should be the same .xxJulia

I am so cross for you! That’s really crap of them not to time it better! Grrrrr! xx

Thank you ladies! - I am sure you will all resonate, I am so sick and tired of worrying - S*D the cancer, S*D the tests, S*D the hospital, S*D the Oncologists. Until tomorrow anyway!! LOL

LittleSan profile image
LittleSan in reply to

Absobloodylutely! No wonder you're frustrated. Xx

Lynn I feel exactly the same way right now to be honest if I could walk I would walk for miles but my mobility wont let me

in reply to

I am sorry to hear that you are currently not as mobile as you would like to be, I hope that they sort out treatment that resolves that issue for you. Take care xx

Hi Lyn ..I am also on watch and wait after a recent CT and PET scan showed numerous nodes. Finished chemo 20 months previously, CA125 up to 120 . Oncol recommends PET in 3 months so know how you feel.. like walking on egg shells!! Also Bracca neg. so e wait and see.. Any others on watch and wait?....wish you and all the other ladies all the very best xxx Brenda

You may want to request a molecular profile as Olaparib and all other Parp inhibitors are suitable for Homologous Recombinant Deficient tumors, this includes the four BRCA types, PTEN loss and other HRD.

Sorry it's taken so long. Mine took 3 months so would be useless for taking Olaparib even if I wasn't 5 years down the line. There's always hope even in the bleakest times. You may find you're negative there's a 50% chance. I would agree there's nothing worse than waiting and waiting for results and every scenario going through your mind.

Wish you all the best, Zena xx

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