Trial drug

[Katmal-UK]

As many of you know I have been trialling Olaparib for 6.5 years. I was talking to my trial nurse today having visited the Christies for recent scan results (all good) and happened to mention that the trial may have been stopped due to Covid. She said if the trial was stopped I would continue on Olaparib, as it is now licenced, due to my response. Phew what a relief! Interestingly its now also being trialled for front line alongside chemo and for other faulty genes xx

[Rosiemd]

Brilliant Kathy and great news on your scan result. Been on olaparib for 4 months now all seems good. Monthly blood tests but wondered how often do you have a scan.

[Katmal-UK in reply to Rosiemd]

The protocol for the trial is a scan every 24 weeks. in the beginning I used to have bloods weekly for a month, then monthly for three months but for now its 12 weekly. I had scans 12 weekly for the first year which then went and remain at 24 weekly. I hope you get a good response xx

[win_56]

Kathy that's brilliant news.... It's amazing the results you have had on this trial. You have come a long way since your diagnosis and prognosis..... Wishing you all the very best for the future. You got this 🤞😂. June.x

[Hidden]

That’s super, Kathy! You paved the way! I’m a year on Olaparib now and keeping everything crossed that I follow your example. Well done on another clear scan. That’s the kind of news we like to hear. Keep up the good work! 🤗🤗🤗🤗🤗🤗🤗🤗

[Katmal-UK in reply to Hidden]

Sounds like its working for you, long may that continue! xx

[delia2]

Congratulations on your scan and news about being able to stay on Olaparib. You are such an inspiration to me and many others!!!

[Lyndy]

That’s good news! They shouldn’t stop you getting it because of your response to it and the fact you have been a pioneer for the rest of us ❤️

I will be offered Rucaparib after chemo so hoping I can follow in your footsteps xx

[Katmal-UK in reply to Lyndy]

Hi Lyndy, I hope Rucaparib works for you ! xx

[Emsymits]

Fab news! I just wish they’d license it for those of us who haven’t only just finished chemo. Still got my fingers crossed that I won’t need it or if I do that by then they’ve changed their minds and I can have it!

[Lindaura]

Dear Kathy,

So glad that you are still doing so well on Olaparib.

And so glad to hear that you can continue init, hopefully forever.

It has been a literal life saver for you.

Hugs 🥰

Laura

[Gemimablackvelvet in reply to Lindaura]

Hi Laura, firstly how are you?

Secondly have you read in The Telegraph this week about a new parp called BERZOSERTIB. I believe it was in several other newspapers on Tuesday. May be old news to you but just wondered. I haven't read it in depth but I intend to now.

Lots love to you and all

Angela xxx

PS. Why do they insist on such difficult names to pronounce for these drugs? My oncologist finds them difficult too

[Lindaura in reply to Gemimablackvelvet]

The names are truly incredible!

This one is impossible, but I read about it here:

irishnews.com/magazine/scie...

Now I am waiting for a blood test to see how I am doing 7 days after Carbo!

Hugs,

Laura

[mrstadpole]

This is such positive news Kathy.I started Olaparib a month ago and so far all good.May I ask are you BRCA 2+ Kathy? I think it is supposed to work well.

Ann xx

[Katmal-UK in reply to mrstadpole]

Hi Ann yes I am BRAC2. I hope it works well for you xx

[mrstadpole in reply to Katmal-UK]

Thank you x

[January-2016-UK]

Great news! Trail blazer! Seriously 6.5 years is amazing.

[Wonnie]

Delighted to hear of your continued super response. As everyone says, your story is a beacon to follow. X

[Mumsie13]

Hi Kathy, This is amazing that you are doing so well. I note that you are BRCA positive. Would you happen to know if Olaparib is only good for those who have the BRCA gene or can it work for those who are not BRCA positive. I have just started second line chemo (carbo/caelyx) for recurrence of ovarian carcinocarcoma which is rare and aggressive. I am just thinking further down the line (positively) as I know the cancer is going to be difficult to treat. Any info would be useful. Stay well. Jackie x

[mupash in reply to Mumsie13]

HI-JUST SAW YOUR POST AND WANTED TO SHARE SOMETHING I JUST FOUND OUT. WHILE YOU MAY NOT BE BRAC POSITIVE YOUR TUMOR MIGHT BE. WAS IT TESTED?

BEST WISHES,

LEE

[Mumsie13 in reply to mupash]

I didn't know that. Very interesting. Another question to ask my oncologist when I have finished treatment. Thank you so much for the info. I already have a gene carrying bacteria (not the good kind) so what's one more parasite. At least ths might be somewhat useful.😉 Jackie

[mupash in reply to Mumsie13]

WE ALL HAVE TO EXPLORE ALL OPTIONS.

I HOPE IT HELPS-

BEST OF LUCK,

LEE

[Katmal-UK]

Hi Jackie From what I have been told trials started a couple of years ago for those who aren't BRAC positive and I was advised yesterday that they are trialling it for those with other faulty genes. It might be worth speaking with your oncologist and ask to be genetically tested (if you haven't already been) then at least you would know what options you may have? I wish you well and hope your chemo is going well xx Kathy xx

[Mumsie13 in reply to Katmal-UK]

Thanks for your reply. I was tested and I am BRCA negative. I remember someone saying there was an arm on a trial at Royal Marsden (can't remember what drug it was) for people with carcinosarcoma or it might have BRCA negative, I forget, I lost the info but I have a feeling it was for a specific cancer. It is useful to know that it is now licensed so I can legitimately ask my oncologist about it. Anyway, I am just being a little proactive just in case. The chemo went well but it took six hours instead of three - don't ask. Good news is it appears I can have carboplatin again - fingers crossed. Jackie x.

[Gemimablackvelvet in reply to Mumsie13]

Hi Mumsie,

was it the new drug BERZOSERTIB that I've just mentioned to Laura? There was an exciting article in The Telegraph on Tuesday about it and yes it was on trial at The Royal Marsden.

Good luck with the chemo.

Love from Angela xxx

[Mumsie13 in reply to Gemimablackvelvet]

Thanks. I will have another look for that thread with the info, I'm sure I did save it but was in a rush at the time so could have missed it. I've made a note of the article and will look it up. It could well have been that drug. I have made a note of the article and will look it up. Thanks for the input - much appreciated and it all helps. Jackie x

[Ge0rg1na]

Congratulations! I'm so happy for you as it takes away any doubts you had x

[WoodyB]

More great news from the "trialblazer" of olaparib. Many thanks for sharing your story Kathy and for inspiring so many others.

Does the pre-appointment anxiety get less with time? Suzanne continues to respond very well to olaparib but gets incredibly anxious before blood results or scan results. Your 6.5 years is amazing xx

[Katmal-UK in reply to WoodyB]

To be honest I don't consciously get anxious until I am actually in the room and the dr walks in, up until that point I'm fine. My husband has never missed an appointment in nearly 13 years but obviously due to Covid he's been unable to be with me for the last 2 appointments, which yesterday included my scan results and I was fine. in fact my BP was spotw why I''m like that, maybe it is a time thing, after all I am nearly 13 years since diagnosis, maybe time does lessen anxiety? I wish Suzanne well xx

[WoodyB in reply to Katmal-UK]

Many thanks for your reply. Really pleased that anxiety is no longer a problem for you after all that time on the "magic" pills. Suzanne and I cheer every time AstraZeneca is mentioned on the TV!! Long may the magic continue for both you and Suzanne (and of course the other ladies and gents taking olaparib) xx

[Katmal-UK in reply to WoodyB]

Hi, just seen your earlier post about Propanol for anxiety? I take this for High BP which was caused by being on a trial for Avastin..... maybe that's the answer?

[thomas62 in reply to Katmal-UK]

Hi again Kathy, Does blood pressure not right itself then if it takes a hit with Avastin? Thanks. Gwen x

[Katmal-UK in reply to thomas62]

Hi Gwen, I had raised BP before diagnosis and it went higher on Avastin, my meds have since reduced.

[WoodyB in reply to Katmal-UK]

Kathy, as I'm sure you know, propranolol has also been shown to benefit OC patients so in a funny way, it's not a bad thing to have high BP!!

[Katmal-UK in reply to WoodyB]

Yes I know....lol

[thomas62]

Hi Kathy, Would low graders be able to access Olaparib. If so, would it be part of a Trial. So pleased that, if necessary, you could continue with Olaparib. I was at the Christie today having an MRI Scan. Their systems are well-oiled! Gwen x

[Katmal-UK in reply to thomas62]

Ti be honest I don't know. If you are being seen at Christies it might be worth asking. xx Kathy x

[thomas62 in reply to Katmal-UK]

Thanks Kathy. You're so helpful. You always reply to us. Gwen x

[Hidden]

Great news Kathy. Wishing you well for the future 💐

Jennyx

[ShropshireJo]

Hi Kathy. That’s fantastic news. I’m so pleased for you and for all the lovely ladies here - it gives us all hope of better treatments to come. Love Jo 🌺🌼🌸🌻🌹

[Meridian14]

Wonderful news on many counts; your length of remission, scan result, continued treatment, and now the front line trial. Great news. Thanks for your post, Katmal. You help set the milestones for many of us and as many have said, you're an inspiration.

Best

Lisa x

[Kempyhillbilly]

Wonderful and uplifting news, I’m so happy for you xx. I’m unable to have this as I’m platinum resistant but hope to have alternative offered if it’s out there. Best wishes xx

[Katmal-UK in reply to Kempyhillbilly]

Hopefully something will be found that you are able to have xx

[Petrolhead]

Kathy

Brilliant news- long may it continue.

Best wishes

Fay

[Katmal-UK in reply to Petrolhead]

Thanks Fay x Hope yr doing ok xx

[Nicky100]

Brilliant news Kathy! What a relief!

You’re an inspiration to us all and a shining light of hope... thank you xx

[Katmal-UK in reply to Nicky100]

Thanks Nicky....hope everything is going well for you x