Gutted about Olaparib

[Emsymits]

Hi ladies. So I went to the Onc today - all seems ok and CA125 still low at 10 so very relieved. However, I hadn't realised how much I'd been pinning my hopes on the new NHS availability of Olaparib.

I thought I'd qualify (BRCA 1 and responded to platinum chemo) but apparently not - it's only for those having recently completed chemo first time or after 3rd recurrence. I'm 2 years post first chemo.

Whilst I would prefer to live drug and side effect free, I'd hoped Olaparib would be a bit of certainty. I'm just so f@cking tired of 'thinking positive' every day with my fingers crossed.

Gutted.

Em

x

[Lyndy]

Hi Em

I know that it can be demoralising when you pin your hopes on something but it doesn’t happen.

However... you do seem to be doing rather well without it!

It’s still ‘in the bank’ when/if you do need it but the longer you can go without probably the better?! xx

[Katmal-UK]

Hi Em I agree with Lyndy totally and let's face it, it may be that hopefully you will never need it! Glad to see you are doing so well xx Kathy xx

[Lindaura]

Well, I do think that is totally wrong, that you should still be in the running for Olaparib, as it wasn’t available when you finished first line!

It seems totally un fair! And also inflexible.

On the bright side, you’ve managed to remain NED for 2 years! And BRCA1 positive.

I am very jealous. For me, I wanted Olaparib, but got Niraparib, which all professionals claim has the same efficacy,

But even though I too am BRCA1 positive, it did not work for me and my cancer progressed in spite of it.

You are a winner anyway.

Don’t get too hung up on missing out on the miracle drug.

You are the miracle now.

Hugs,

Laura

[Hidden]

You have done very well but hopefully this or a newer drug will be available should you ever need it in the future. Stay well meantime

[Neona]

Really understand- I was turned down for a trial and was utterly devastated. However another one came up- onwards!

[delia2]

Hi. I get your disappointment but the drug will be there for you later when you really need it. You’re in great shape now. Who knows when or if the cancer will return. 🌻🌼🌸

[Artgreen]

I couldn’t agree more. I feel I want every chance and while I’m the only active fundraiser in the U.K. for my low grade serous oc I know the drugs or combinations that may work are going to be a long time coming. That’s why I’ve written to NICE as advised by my GP to get them to take seriously the research done in the “How to Starve Cancer “ book by Jane McLelland so we can get agnostic drugs that work in tailored combinations for each particular cancer. Maybe if all UK people did that they may help us feel we have more options and control.

We don’t all want to wait until the situation gets worse.

Wishing you the very best

Alex x

[Iside in reply to Artgreen]

I too am taking agnostic drugs via the Care Onco Clinic after a resurgence of OC 10 months ago. Tolerating them well & although my OC has stabilised the CA125 is increasing by 9 every 3 months!!!! I finished 6xcarbo platin/Caely 3 months ago & am sure the continued use of these drugs will keep me going until ?

Did you have a response from NICE?

Hope to hear from you,

Sincerely,

Iside

[Artgreen in reply to Iside]

I did have a negative response from NICE. Very disappointed. I’

[Artgreen in reply to Artgreen]

So sorry, technical problems! I was going on to say you might find there’s an infection or inflammation being picked up by your ca125. I’ve introduced turmeric, garlic and quercitin as well as the other agnostic drugs . It seems to be reducing my ca125 count a little. It may be worth trying. I’m off letrozole for a month as the aches were difficult during what is a stressful time with my mum having pancreatic cancer. So I’m expecting it to increase but we will see. It’s worth experimenting I feel!

Thinking of you

Alex x

[Maxjor]

Did you check if the rules for Niraparib are the same (in terms of relapses or when you can start?) I thought I had read they changed those rules in the UK for only that drug but I am in the U.S. and may not know what I am talking about. But good to check. I am also jealous you are 2 years going with no drugs! And I know how hard it is to feel positive all the time and to hear that all the time from others. Wishing you continued success with no relapses!!! oxox

[Lizchips in reply to Maxjor]

I totally agree, I have a hard time understanding some of their treatments. They have all sorts of other programs they're put on after chemo. I had stage 3c clear cell ovarian cancer. I'm in California. Best wishes too you, ❤❤Liz

[Lizchips]

Its better sometimes to need nothing, I had first round chemo, as you ladies say, I take zero medications 8ve been cancer free 5 in a half years. The US doesn't do a lot of trials, only if chemo isn't working. Eat good foods, I take turmeric and curcumin daily. Plus 400 coQ10. I drink lots of different teas. I don't worry my ca125 has been a 7 for over 5 yrs. Don't dwell on the disease. Deal with it if it becomes an issue again. For now your healthy. Best wishes ❤❤Liz

[Hidden]

Don’t lose sight of the bigger picture. You are still NED! Enjoy such hugely positive news and don’t worry about the unknowable future. Go celebrate!