Hard post to write when I know so many are having such a rough time and believe me when I say I think of all you ladies regularly and that I appreciate how very lucky I am. Well I started taking Olaparib on a trial at the beginning of January 2014. Very Happy to report that I have just had the scan results back from yesterday and still ALL CLEAR. Didn't expect still to be saying this 5 years 1 month later. Kathy xx
Olaparib - Another ClearScan: Hard post to write... - My Ovacome
Olaparib - Another ClearScan
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Katmal-UK
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I am so happy for you. Please don’t be embarrassed about reporting this. It gives so much encouragement to a lot of us who are hoping to stay clear too.
Thankx
Awesome, Kathy. I'm very glad for you. You are reminding us that this disease does not always have to end badly, but that there is hope. /bow
xx. Maus
Thank you for sharing your good news! I’m so happy for you and you give me so much hope because I’m half way through 2nd line chemo and hope to be put on Olaparib afterwards.
Katmal-UK• in reply to
Oh I do hope your chemo is going well and that you do get the Olaparib. I have been very lucky, hardly any side effects (well none I can't cope with!). Big Hug xx Kathy xx
Wonderful news and I hope you'll have a little celebration tonight.
Sticky77
Thanks - I may raise a glass lol.xx
Dear Kathy,
You are a beacon to us all!
Please keep posting your positive experiences and your history, too.
We all wish we had access to Olaparib, as you see from the failures of Niraparib, because it’s sude effects are so much more extreme.
Bless you dear friend,
Hugs,
Laura
Thanks Laura. Hugs back at ya! xx
That gives hope to lots of people no matter what they’re going through! Xxx
That’s just great news Kathy 🥂🥂🥂. It’s always good to hear such positive news .
Love Sheila 🌸🌸💕🌸
Great to hear Kathy! Much love xxx
Kathy that is amazing news. Never ever be hesitant in sharing good news. There is plenty of it out there and it needs sharing. Keep on being an inspiration
Marian xx
So pleased for you Kathy. Your news must give hope to others so never worry about sharing your good news xx
Fabulous news Kathy! 🥂🎉⭐️
Well done Kathy that is fantastic news! Long may it continue!! xx
amazing news! Long may it continue 
Fantastic news Kathy, long may it continue,, February 13 will be my second scan since starting olaparib, 🤞
Loren x
wow thats amazing! Ive just been put forward for Athena trial at UCLH which is olaparib and rucaparib trial so thats very encouraging! Its blind so theres a 10% chance its just a placebo but a very good chance ll get one or both of these parps! Ive responded to carbo taxol (1st round) and had a 3cm diaphragm tumour found after 2 and its reduced and now 1cm and I've still got 2 chemo to go. Any advice would be amazing.
So pleased for you
Nikki
Hi Nikki. Hope yr chemo is going ok and that you get on a parp. just make sure you get the right antisickness and hopefully it should be fine xx
I think it’s so important to share good news. You shouldn’t be worried about posting. These are the posts people look forward to reading xx
It’s amazing and gives so many hope... we all need a little bit of that Kathy. 🎉⭐️💛
Delighted for you. Well done.
Excellent news. Fay
Hello
It shouldn’t be a hard post to write. It’s always good to hear that things are working well.
Niraparib didn’t work for me so starting my fourth round of chemo in a couple of weeks but I will be pestering doctor for a try at olaparib very soon.
Thanks for posting good news, it really cheers me up to read positive reports. Long may you continue to be in this position.
Love
short friend x
Great news! It’s amazing!
Hurrah, it’s great news. Nicola
So very happy for you Kathy! What awesome news! Thank you for sharing. You are such an encouragement to others in many ways with your posts. Continued blessings to you! 💖 Peggy xx
It goes to show how far treatment has come. So pleased for you and anyone who is having positive responses that enable them to live their lives to the full. It’s very uplifting to hear. Long may it continue. X
Cheryl
Congratulations!!!!! This give me hope, I finished my last Chema September 4th (Fallopian tube ) was very excited with NED and CA125. Was 3 then Jan 18th had bladder lift surgeryand found tiny spot and it was positive 😟 So February 8th will start chemo (6treatments) once again. But with different drugs ... carbo/Gemzar and maybe Avastin .... don’t know what to expect for side effects from these drugs, and just sad right now. But luv hearing success. Stories! Hugs
That's great news, just what we need to hear xxx
Such hopeful & encouraging news . Wishing you many more such years . Keep posting please .
Mary x
Kathy, that’s fantastic news. Thanks for sharing. It lifts my spirit to hear of your success. With love Jo xx🌺🌼🌸🌻🌹
That is brilliant!!! . 4 years is amazing . You must be over the moon!!! . I’m sure your doctors are delighted too!! I’m so glad that drug is working for you! I wonder could it work for non BRCA women too?. Hope you have a nice weekend and do something nice to celebrate the clear scan!!! It’s super news and thanks for sharing it .
D
That’s amazing. It’s following your journey that has helped me so much. May you have many more years of all clear ahead
LA xx
Congratulations Kathy, I feel your delight and it’s deserved. It’s important to share good news, it gives encouragement to us all. Keep up the good work lovely ❤️Xx Jane
Fantastic news Kathy.This is so encouraging to read xx
Well done ! It's so good to read of your success.
Can I ask why you finished with avastin. Was it the end of a trial, or was it no longer working for you? Keep up the good work. Pauline.
Katmal-UK• in reply to
Hi Pauline. I completed the trial for Avastin and went about 3.5 years after completion before my first recurrence x hope you are doing ok xx
Fantastic news, Kathy. And thank you so much for continuing to share your good news and providing others with so much hope and support xx
Great news x
I think about that--and you--all the time Kathy and let's face it, we need good news. You say this is a trial and my hopes are they really are focusing on you and others who are going long term (maybe forever!) on a PARP (or Olaparib in particular) to see what/why/how as it will help so many down the line. Congratulations to you and ENJOY. You are the reason I say rubbish when the medical community says they don't know if PARPs can extend life expectancy. SO happy for you. oxoxoxo Judy
Hi Judy. Thank you. They are focusing on me in a way, I was asked early last year if they could take extra bloods and have access to my original histology so they can try to understand why im doing so well. Of course I jumped at the chance. Whatever it takes...... thats why I take trials if lucky enough to be offered one, not just for me but for others and those who will be diagnosed in the future . hope you are doing ok xx
Well done Kathy. Your positive result gives everybody such hope for all our futures. It's a time to celebrate for us all. Keep on striding forward l for one hope to keep pace with you. Take care
X X X
💚💕
Well done Kathy, may it go on and on and on, and hopefully they will learn from you. Love Bridie
Fantastic Kat, just shows that they don’t always know and some are so quick to give in ! Credit to us all xx
Thrilled for you Kathy, here is hoping for continuing successes and beating the odds. You should never apologise for doing so well. It really does give hope , and hope is a very , very powerful thing. It inspires and for some of us makes us think positively that We also could be one of the lucky ones.Love Chris
Oh goodness! Good news and such an encouragement! Thankful!!!!
Fantastic news! So happy for you. You bring hope to everyone!
Fantastic news Kathy. Long may it last. xxx
That is wonderful news and very encouraging! We need posts like yours to keep us believing and fighting! We are beginning to see the light at the end of the tunnel! Best wishes to you for continued good health and happiness!!!
XOX
Marisa
This is so encouraging! I’m due to start on Olaparib in 2 weeks having just finished frontline treatment- now NED. I hope it works as well for me. My oncologist is very excited about this drug so I feel very lucky to be offered it!
Good luck, I hope it works well for you. Are you BRAC positive?
.
Yes Brac1. That was one of the criteria to get it after frontline treatment so at least that’s a plus. Just hoping I don’t get too many side effects - fingers crossed!
I have very few side effects, loose/urgent bowel Motions (sorry prob TMI LOL), dizzyness now and again from sudden drop in blood pressure when standing/rushing around, some nausea. Other than that its life as usual xx Good luck !
Can I ask where you’re being treated? I was keen to get Olaparib after frontline chemo but it’s not yet been given NICE approval (in USA now given FDA approval though).
Thanks (message me if you’d prefer not to state on here).
No it’s fine...I’m being treated at st.James Leeds. I was offered it at Christmas ( my last chemo 4th jan) My oncologist was very excited saying how wonderful this drug was and I have since got to the bottom of how it’s become available after frontline as he explained it all to me today. AstraZeneca have agreed to fund nhs patients after frontline basically for life or until it stops working basically because they are after the frontline market so it’s a bit of a sweetener to try to secure the deal and I believe it will be reviewed again by NICE later this year. It’s an extension of the SOLO trial but no placebo and as long as the individual hospital signs it off ( but why wouldn’t they - it’s a free drug that’s proven to be effective!) St.James signed it all off and approved it today! Now any lady can have it after frontline chemo as long as they have a good response to chemo and they have to have a Brca mutation but I believe it can be germline brca or brca mutation in the tumour. You have to be on the drug within 8 weeks of frontline chemo which is why I was there today having blood tests etc as they are ordering the drug in for me and I have an appointment to receive my first lot in two weeks. It’s no secret as all the nurses were talking about it so speak to your oncologists and quote me if it helps! Good luck!
Hello, can you message me the name of your consultant please? I'm going to seek a second opinion even though I'm now five months post chemo finishing. Thank you!
Hello. Can I ask, is everyone who’s has had Olaparib on a trial or are they offered it as standard? I’m doing on Athena which is a trial at UCLH but there is a chance I will get a placebo. Can I ask how people got it and where? I’m clear cell stage 3c. Many thanks
Fantastic, wonderful news 🎉
Please don’t stop posting your good news as it gives us so much hope for the future 🥂 Cheers and here’s to many many more clear scans for you and other ladies on these Parps
Love and best wishes Kim 💜x
You go girl!
ARE YOU KIDDING! This is news we all want/need to hear. Keep it comin' girl and may it long continue. Hugs from Kathy in Seattle
Great news and long may it last.😀😀
Congratulations! I agree with the others. It gives hope to those of us who have only had a couple of clear scans so far!
Hej Kathy...Its so good hearing positive feedback. Thanks for sharing. I've read your cancer history and can see you have really been through a lot. You are so brave!! I too am braca 2 positive and felt like I had been given the death sentence..had OC 2012...and cancer free after op and chemo since jan. 2013 until june 2018...where ca 125 had risen to 128...last time I had it checked prior to that was end of 2016, and it was only 10. (I am left wondering when exactly the cancer returned?) I only found out about braca 2...end of 2018 and l was on no medication at all so I guess I'm lucky to have been cancer free almost six years after and without using any medicine. I have just started Olaparib recently after chemo etc., and it is encouraging to read that you have done so well on Olaparib. Kathy you don't have to answer this, but Im finding it a huge worry waiting for my children to be tested for Braca. How did you cope, regarding evt., family members? X
Hi Liz. Firstly how old are your children? Mine are now 25 (son) and 29 (daughter). My son has been tested and unfortunately tested positive and will now be screened at a much earlier age for prostrate cancer. My daughter has yet to decide to be tested. My son had to go through counselling prior to the test and receiving the results. My older brother tested positive but his children negative. My younger brother has not had any test yet. xx
Sorry to hear that your son tested positive Kathy and hope the counseling helps him. I can't imagine how it made you feel, even knowing we cant help being Braca 2 pos.? How did you manage? My sons are 30 and 25 and my daughter has just turned 23. My eldest son is awaiting results but my 25 yr old refuses to get tested. My daughter made an appointment for testing as soon as I told her my status end of last year but they have prolonged the date till sep. this year for her first consultation. She tells me that she does not need counseling, but I fear that she is "keeping it in" and it is affecting her negatively without her realising it, if that makes sense? X
Hi Liz. My son only had counselling initially to ensure he understood the implications of having the test. It's a tough one, yes I feel guilty on the otherhand I had no control. I got mine from my late mother who, had she known, it would have destroyed her. My son and I are made of sterner stuff, I've had conversations with my son and he doesn't blame me so I have to accept that (doesn't mean I wouldn't give anything not to have passed it on). I get what you mean about your daughter, I think that mine is playing ostrich and that worries me esp as she has three children. The plus side (if there is even such a thing) is that if the gene does cause a cancer diagnosis there appears to be more treatment options and response to chemo is better (my mum didn't have a recurrence of OC andI am in my 12th year despite 2 recurrences xx
Hi Kathy, so happy for you. Your story provides hope for so many. My sister is BRCA1 and had surgery+6 rounds of carbo+taxol completed in Feb 2016.
Ca125 dropped and stayed at 8 after that. Until in March 2019 it was 45 then 1 month later 84! PET scan is clear NED.
Her oncologist started her on olaparib 600 mg/day ( 300 mg twice a day).
Unfortunately she is having severe side effects just after 3 days. She has extreme fatigue, unwell feeling, leg pain, itchy skin and maybe due to all this depression.
It's encouraging to see so many here do not experience severe side effects of olaparib. Maybe my sister needs dose adjusted.
Kathy- can you please tell me what dose of olaparib are you on? Did they gradually increase it? Any tips, advice you can share to deal with olaparib?
Reading your story I feel that olaparib can really help my sister.
Many thanks!
Hi, sorry for delay in replying. Im on 600mg per day. 3 days taking Olaparib is still early days. The side effects do settle , probably takes a good month. I am aware some ppl have their dose lowered which is working for them. Try looking on a facebook page entitled parp inhibitors where lots of ladies share their experiences which may help yr sister. The depression is probably a combination of everything, this is a tough road. Yr sister may need to consider help in the form of counsellinv or pills , I found a few sessions of counselling help me so much. I wish bith u and your sister nothing but the best. Big hug, Kathy xx
That’s fantastic news for you Katmal. I am BRAC2 and have started Olaparib 6 weeks ago following 8 Chemo treatments prior to surgery and 4 chemo treatments after surgery. I was diagnosed in November 2018 and following surgery it was deemed stage 3c. No symptoms until I started to fill up with fluid in my abdomen. Surgeon said it had been ther for 2-5 years.
So far my ca125 tests have fluctuated a bit but currently on 51 though they were in the thousands at the beginning. Both my brother and I tested positive for the BRAC2 gene but luckily his 2 daughters and my 2 daughters all tested negative.
I have little side effects other than loss of taste in some foods and a peculiar smell in my nose. 😊
I’m hoping for success with this drug too. Stay well.xxx
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