Olaparib - its official!: So after joining the... - My Ovacome

My Ovacome

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Olaparib - its official!

Katmal-UK profile image

So after joining the double blind trial for Olaparib at the beginning of January 2014 I have today been told the trial has been completed and unblinded and that they can confirm that I have indeed been on Olaparib, which was indicated by various side effects and the shape of my blood cells lol. This is my third trial, albeit my first double blind trial. To say Im actually ecstatic is an understatement. If Ive helped one person its been worth it, lets face it its not like I havent benefitted too! Nothing will change for me as they still want to collect the data . If I had to take part in another trial I would in a heartbeat. My greatest wish in all all of this is that others benefit, now and in the future. xx Kathy xx

69 Replies

Fantastic! Bless you Kathy for thinking of others as well 💕xx

That's fantastic news! Cindy would be really happy about this!! Xxx

Katmal-UK profile image
Katmal-UK in reply to CallmeMum

I just wish Cindy was hear to read it xx I hope you are doing ok xx

CallmeMum profile image
CallmeMum in reply to Katmal-UK

We're doing okay thank you! I know Cindy Suzanne Krissy and everyone else is looking down celebrating with their teal wings xxxx

That’s great to hear, Kathy. Thank you for contributing to the well being of many women.

Best wishes from Louisiana

Sashay

An achievement, indeed! Well done and many congratulations. Keep going strong and in full remission. Do you take any supplements with Olaparib to help with its common side effects and most importantly boost the blood/anemia, and fatigue.

Hi, Ty for your kind words. I dont take any supplements, just prefer to eat healthily. I'm lucky in that whilst I get tired at the end of the working week I dont really suffer too much with fatigue and my bloods are always good. I never underestimate how lucky I am xx

Bless you! Excellent news - it is not just luck. You are doing something right - Keep going xx

ovarian1c profile image
ovarian1c in reply to Katmal-UK

Sorry glad your doing good! God Bless!

You have done so well on this drug Kathy and long may it continue for you. I am hoping that Rucaparib will do the same for me when I start it in October after the completion of chemo.

Take care.xx

Katmal-UK profile image
Katmal-UK in reply to Caleda4

EVERYTHING crossed for you xx

Thanks for doing it! I would also participate in any trial if offered.

Thank you Kathy. Wonderful news and after all these years great to know you were on Olaparib (although you probably knew this). As always an inspiration for us all with your updates and positivity x

Hello Kathy

Did you doubt at first if you were on the real thing? I can imagine it must be quite worrying to think you might be taking a placebo.

I've followed your story since I joined, you must feel blessed. Are you to still take Olaparib?

All the best

Helen

No to be honest Helen a few weeks in both the Consultant and I were pretty sure I was on Olaparib. This is my third trial, the second double blind one (where neither I nor the Consultant knows if I am on the drug. I am still to take it, nothing has changed. They now want to follow me to see how long I an continue on it and what the long term side effects will be (if any). I do indeed feel very blessed and EXTREMELY lucky. Thank you for your good wishes xx I hope you are doing well. xx Kathy xx

Fabulous news, well done 👍🏻

Still my role model (albeit on Niraparib!!) xx

That’s super, Kathy! You have been amazing. It’s excellent that you’ve been on the drug the whole time. It gives great hope to me and anyone else taking it. You’ve helped, and will continue to help, hundreds, maybe thousands of women.

Well done! Keep up the good work!

I’m full of admiration for you!

Anne 🤗🤗🤗😘😘😘

Very well done, Kathy - you are amazing and I am so very happy for you - wishing you permanent remission, great health and quality of life - you’ve earned it ⭐️💕💖. Love from Mel xxx

That's brilliant news Kathy and you've helped so many others at the same time😍

What fantastic news!

Shedding tears of joy for you xx Jaki xx

This is great news all round. Firstly the benefits the drug has brought you - so deserved. Secondly all the other ladies who will benefit from your willingness to be a pioneer and join the trial. Thank you and wishing you continued good health.

Jan. Xx

Thank you Kathy for being a brave guinea pig! I am so pleased it worked so well for you and very hopeful that it’s sister Rucaparib will work as well for me. xx

Katmal-UK profile image
Katmal-UK in reply to Lyndy

Thanks Lyndy I truly hope it does xx

Wonderful news xxx

Wow Kathy, that’s fantastic news. Your journey gives us all so much Hope xxx

Hurray! I love hearing your news. Xxx

Hi Kathy

Such wonderful news.You are a great inspiration to me.I started Olaparib 4 months ago now and feeling really good.I hope that we all continue to do well on these drugs.

Ann xx

Katmal-UK profile image
Katmal-UK in reply to mrstadpole

Hi Ann Im so glad you are feeling well on Olaparib, for me its prob been the easiest trial drug to have been on. xx Good luck for continued well being xx

As always Kathy you are an inspiration. I hope I can follow in your footsteps. I too tell others that I feel lucky to be on Olaparib (and Cediranib). I didn't actually realise that you didn't officially know that you were on it. Have they told you anything about the general results for the trial?

Nicola X

I never officially knew but my Consultant was 99% sure given side effects and odd shaped blood cells, theres a name for it but its a mecical term I cant remember lol. The results from the trial have been published and from what I can tell are really good. If you search SOLO2 then you can read the results. Makes for good reading.

Thanks Kathy, I've just read these results and Olaparib truly is a great drug. You should be very proud of being part of this first completed trial into long term use of a Parp drug. There is so much rubbish going on in the world at the moment and on top of that we are battling this cruel disease. Your news today brings us ladies hope that science is working for us like never before to give us more of a fighting chance. You really are a pioneer Kathy.

Sending a grateful hug

Nicola x

Hello, did you just search SOLO2 trial results? Thanks

Yes, just SOLO2 results.

How are you finding the combination? I trialled Cediranib after my 1st recurrence.

After 5 months the upset tummy was proving too much and I was losing weight. My consultant told me to have 2 days off the Cediranib per week and that has made a huge difference. I've got very mild neuropathy of late and feel extremely tired some days but that's usually because I've been feeling fine and have overdone it! I feel lucky to be on both tablets. They're doing their job and holding the disease back. I'm happy with that.

I found I had a lot of bowel issues with Cediranib and mild issues with Olaparib so I did wonder how taking the two together would work in that respect. Im glad to hear you are doing well xx

Well done you. Result you were on the actual drug too😀

Great news Kathy. Best wishes, xxx

That's absolutely fantastic x

This is fantastic news Kathy. Very well done for being a brave volunteer. I’m so glad it’s worked so well for you. Long may it continue to do so. xx

Hi Kathy,

I'm so pleased for you, hope you continue to have this success. Suexx

Thank you Kathy .xx

Well survive 5 years already a good thing. Are you braca? Cobgrats

Katmal-UK profile image
Katmal-UK in reply to Ruebacelle

Im actually in my 13th year (anniversary in October). Yes I am BRAC2.

Ruebacelle profile image
Ruebacelle in reply to Katmal-UK

wow evedn better those of us without braca have a death sentence. i cannot talk anyone in france into giving us parp inhibitors unless we are braca and lst or 2nd line. it is infuriating on a good day and hugely depressing otherwise. all the best going forward, hugs.

Lyllla profile image
Lyllla in reply to Katmal-UK

Hi Kathy. Great news. Does your ca125 fluctuate? Praying you stay well.Xxx

Katmal-UK profile image
Katmal-UK in reply to Lyllla

Hi, no it’s remained below 3 for nearly 8 years now.

Lyllla profile image
Lyllla in reply to Katmal-UK

That's great. I have been on olarparib for 5 years. Ca125 is usually 10 or11. Crept up to 17 .I am worried , but my oncologist is not . Thanks for replying I am brca2 as well.

Katmal-UK profile image
Katmal-UK in reply to Lyllla

Be aware sometimes it can be the way the result is read by the technician. Sounds like you are doing well. Long may that continue.

Lyllla profile image
Lyllla in reply to Katmal-UK

Thank you. Bless you.

Well done Kathy that's great news. It gives us all a lot of hope. Kath xx

Wonderful news Kathy, keep taking the drugs lovely ❤️Xx Jane

Oh my, yes, it has to be exciting to find you were getting the tested drug! Let us know your results!!

Great news Kathy, you have been a real inspiration to me ever since I joined the forum over 4 years ago! Thanks for encouraging so many of us.

Love Barbara xx

That is fantastic news. You are an inspiration xx

Hi Kathy, so chuffed to hear your wonderful news! You inspire us all on this site. Going in for trials which help benefit others and offering advice from your experiences give us all hope. Thank you

Xxxxx

Fantastic news Kathy, it’s inspirational you are giving people hope.

Hugs Ellsey xx

Great to hear Kathy.

You have inspired many of us on this forum- not only because you’ve been willing to trial treatments but because you respond to posts and questions in such a helpful and positive way. You are always so empathetic and caring.

Thank you .

Joy x

Super👏👏👏wishing you continued good health.

Meant to message a few days ago. You are such an inspiration to us all. You gave me hope when I first went on olaparib. I've been on this for 7 months now and all good so far with very little side effects.

Rosie

I have only just seen your post, Kathy.

Fantastic news. Thank you for putting yourself forward for this trial in the name of science and research and helping others. 13 years..amazing! Long may it continue.

Hugs

Lisa

Katmal-UK profile image
Katmal-UK in reply to Meridian14

Thanks Lisa. Hope you are doing ok x

Meridian14 profile image
Meridian14 in reply to Katmal-UK

On the whole, yes, I'm not doing too badly thanks Kathy.

Although, still struggling with shoulders and arms that have limited mobility, hands that still seize up, a swollen Achilles for 8 months now which means I can't enjoy long walks (my favourite pastime), stiff joints in general. I'm working with physio on these difficulties.

My oncologist stopped Avastin after the 14th infusion as I was really struggling with it. I took a break from it after number 13 for several weeks but as soon as i had number 14 my hands seized up so badly the next morning so they decided to stop it. My hands and shoulders are still damaged for now but I'm hoping over time they will improve.

And currently, annoyingly, I have Gastroesophageal reflux and urticaria, so I keep getting hives and welts on my body and face, and an acid reflux lump in my throat and every now and again really horrible pain in my tummy. I'm calling my GP about it today to see what she suggests but i have started to diarise everything that i'm eating and when I get pain and hives etc...

On the flip side, the good news is that the Oncologist said that they can't see anything on my 2nd scan that I had 3 months ago. I cried happy tears.

I was hoping to approach a surgeon soon about the possible reversal of my colostomy/stoma. My original surgeon said a reversal be considered 4 months after avastin stops if an assessment shows that everything inside looks healthy enough. But an Oncologist I met for the first time at my last meeting said that I would need to wait at least two years after chemo, to give my body a chance to fully recover from surgery but also to watch and see what my body is doing... so, it's going to be a longer wait than I anticipated. I'm keen to get the reversal, not least because I have a parstomal hernia - which is a right pain in the bum (on my tum) lol.

But - the main thing is that they can't see anything sinister at this point. Yay!

I'm so pleased that you are doing well and so glad that you decided to stay on the forum. Always good to hear from you and about you

Lisa x

Katmal-UK profile image
Katmal-UK in reply to Meridian14

Oh Lisa sounds like you have had more than your fair share of issues to contend with! Very big plus is that the scan results are good !! Woohoo made up for you. Hopefully the other issues will get resolved. I found after Avastin finished it took a few months for things to setter. Big Hug. Kathy xx

Fantastic news xx

Great post to read. Thank you. You don't know how many people are living with rather than dying from ovarian cancer as a result of people taking part in these trials if which you are one. Thank you from me personally.😘

Awww thank you xx

Thank you Kathy! Hopefully one day they will find a parp that works well for Braca neg the way it works for Braca +

Hopefully, not sure how Olaparib is working for brac neg xx

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