Olaparib or not?

[JayGeeCee]

Good morning ladies, I am hoping someone will have some sage advice for me. I was diagnosed in October 2017 following what turned out to be a huge debulking operation for suspected bowel cancer. The primary site was probably the Fallopian tube- the following PET scan revealed that it was stage 4 as the beast had invades my lungs, peritoneum, ureter and aorta. Carbo taxol worked well and my oncologist was amazed by my response to the regime. Avastin followed and I have been treatment free since this January. My CA125 is currently 9, so all is well.

My dilemma is that following genetic counseling I am BRAC1, this is a changed diagnosis as originally it was negative (!?!?). My oncologist is talking about Olaparib. I will see her at the end of next month to discuss as we put everything on hold while my husband undergoes treatment for esophagal cancer and I needed not to have side effects and be the strong one. He should have his last chemo on the same day as my appointment with her.

Initially I was anti having any further treatment while I am symptom free, why go through all the hassle of feeling crappy again? However, yesterday’s news reports about Olaparib have made me pause for thought- would I be doing myself a favour by agreeing to taking it or should I leave the beast alone and see what happens?

Any advice from those of you who have, or are taking Olaparib would be greatly appreciated. What can I realistically expect as side effects and has it been worthwhile for you?

I live in France so was unaffected by yesterday’s announcement re the NHS, the treatment here is based on need, not cost.

Thanking you in advance and hoping you all feel a bit more comfortable now that the heatwave has calmed down.

Sending love to you all

Joy xx

[Purple-iris]

Hi Joy

We are all different in our outlook and will respond differently to the drugs so it’s always a balance of quality of life and a personal choice.

But If I was offered a tablet that could reduce my chances of recurrence by 70 % ( I think that’s the stats if I’ve understood correctly) I’d definitely give it a go to see if I could tolerate it, and would be over the moon. For our NHS to fund for firstline there must be some strong evidence as they are very reluctant to fund new drugs !

As a 56 year old, non BRACA, stage 4 patient I’m hoping they find a non BRACA maintenance version with the same results ASAP for all us Non BRACA ladies dealing with the fear of recurrence on a daily basis.

Good luck with your decision and I’m sure some BRACA ladies who have taken the drug will be able to offer you an insight into their side effects and views.

I’ve met Florence who was featured on the BBC news and I know she feels she wouldn’t still be here without it.

Love and best wishes Kim x

[JayGeeCee in reply to Purple-iris]

Thank you Kim I needed to hear from people who understand where I’m at. It’s hard for my family to understand and they’re desperate for me to stay well.

Take care, hugs

Joy x

[SuSue in reply to Purple-iris]

Hi Kim has no one mentioned Niraparib to you I’m non braca and was put on this as a maintenance drug as it works the same as Olaparib.

Best wishes Sue

[Purple-iris in reply to SuSue]

Thanks Sue, yes I’m aware of Niraparib but thought it was only available for non BRACA maintenance following chemo for a recurrence. I had Avastin for a year and am 2 and a half years since finishing first line and 1 and half years since finishing Avastin so I’ll definitely check it out again at my next oncology review in Sept incase the protocol has changed. I hope it’s successful for you without too many side effects.

Best wishes Kim x

[Birdsong222 in reply to Purple-iris]

Kim take a look at the ICON9 trial on the cancer research site. This has been offered to me as a stage 4 patient who is non BRCA and had a recurrence after 9 months. Like you l will gladly take a tablet that might help me stay here longer. X

[Purple-iris in reply to Birdsong222]

Thanks yes I’ll have a look at ICON 9

and am also going to check out the Athena trial which is looking at another parp called rucaparib but as I’m lucky to be a year and a half since finishing Avastin I may not be eligible.

I hope the trial is successful for you and gives you a long long remission.

Best wishes Kim x

[Hidden]

Hi Joy,

I started Olaparib a few months ago. I’ve the faulty BRCA1 gene, too. I had just finished 6 months of Carbo, Gem & Avastin for my first recurrence. I get waves of tiredness but I don’t know if that’s because of the chemo or the Olaparib. I didn’t give it any thought when my consultant recommended it. I take 8 tablets every twelve hours. I can’t eat for one hour before and two hours after taking them. I’m getting vitamin B12 & 6 injections. They’re helping with the tiredness. All I can say is that, having been through a recurrence, I’d do anything to try to delay or prevent another one.

[JayGeeCee in reply to Hidden]

Thank you. I think I’ve gone from the feeling that I won’t be around for long (initial reaction to diagnosis) to feeling like I’ve cracked it! Neither is spectacularly healthy I know. I think you’re right and an definitely leaning towards taking it.

Stay well joy x

[Lyndy]

I am not sure this is going to help Joy but I was also dx stage 4 hgs four years ago. Chemo worked spectacularly well- just like you and I also turned out to have BRCA 1.

Four years later I still have no recurrence (despite a couple of scares). If I had been offered olaparib at first line I definitely would have taken it but in hindsight (wonderful thing) it would have been wasted. So I really appreciate your dilemma. If you take it now presumably they won’t offer it again? But might you get Avastin as maintenance later on if you need it?

I read an article by a US oncologist arguing that olaparib should be used earlier in the patient journey because it is harder for women with GI issues to tolerate it ie. at third line. And this all assumes that you will recur... you might not!

I don’t envy you the decision but in the light of what I have just written I think I would go for it xx

[JayGeeCee in reply to Lyndy]

Thank you Lyndy- I think I’m there it’s a real dilemma though because it’s almost like daring it to come back.... stupid and superstitious I know.

I’m so glad to hear that you are well, success stories really give us hope.

Xxx

[WoodyB]

Hello Joy

My wife Suzanne (BRCA2) has been taking olaparib since Oct 2017 following the end of chemo for her 2nd recurrence. It is so much easier to tolerate than chemo. They say that the side effects (mainly fatigue and nausea) improve after the first couple of months and that was definitely the case with Suzanne. She still gets very tired in the evenings but, that apart, she is living life to the full. Her latest CA125 is 9, so the same as you!

If you have a choice, go for the tablets (4 tablets daily, 12 hours apart). Suzanne is taking the capsules (16 capsules daily, 12 hours apart), the same as WoolyHat. She can only get that many down with food, so she ignores the advice about taking between meals.

I am pretty sure Suzanne would have recurred again by now had she not been fortunate enough to get olaparib. My advice would be to go for it. Even the initial side effects should be much much less than chemo, and if you stick with it they will improve with time.

Good luck to hubby for a complete recovery.

Take care, Woody x

[JayGeeCee in reply to WoodyB]

Thank you so much for replying Woody, it means such a lot that you’ve taken the time.

It’s so helpful to read other peoples experiences.

Great to hear that Suzanne is doing well, long may it continue.

Joy x

[Katmal-UK]

Having been on Olaparib as part of a trial for 5 years 7 months I can only recommend you go for it x

[JayGeeCee in reply to Katmal-UK]

Thank you Kathy, I hope you’re doing well. X

[Annr5h]

Hi Joy I don’t have the BRACA gene but if I did I’d take what ever I was offered. My position now is getting chemo to work as I just may of become resistance to it. Believe me I wish I had the new drug offered to me anything to keep me alive. I’m on my 3rd reoccurrence. Ann xx

[JayGeeCee in reply to Annr5h]

Ann I’m still getting my head round the fact that I am apparently carrying the genetic mutation- absolutely no family history as far as I know. It’s been a bit stressful telling my three girls and my sister that in fact they do have a higher risk.

I know that I’ve been incredibly lucky in my response to chemo.

The response from the forum are so helpful in clarifying my thinking.

I hope things improve for you soon.

Joy x

[Seasun36-uk in reply to JayGeeCee]

Hi Joy,

Have ‘they’ explained why they thought you were initially BRCA negative? That seems strange...

[JayGeeCee in reply to Seasun36-uk]

I know....hoping for answers next month. Difficult as I don’t speak French fluently and my oncologist and I franglais x

[Seasun36-uk in reply to JayGeeCee]

Hi Joy,

Just check & be sure that the second test is correct (ie. BRCA positive) . I don’t understand how it can be ‘mistaken’?

Wanting to help you get the right info 🙂

Can you take along a fluent French/English speaker to the appointment? X

[JayGeeCee in reply to Seasun36-uk]

Here in France you get all of the correspondence between doctors. I’ve had the letters checked, apparently one test takes longer than others and that’s where the anomaly showed up! Will be taking my French friend with me to my next appointment xxxx

[Casamimosa in reply to JayGeeCee]

Regarding braca, I was told I did not have the gene but had braca in the tumours if that makes sense? I had 6 chemos then ultra radical surgery and 3 more chemos and now have been given olaparib been on for just 2 months and so far so good. Good luck and keep fighting.

[Solange]

Hello, Joy. I'm afraid I have no advice to give on Olaparib other than say I would take it if it was suitable for me - but it's not. Thankfully for my large family I don't carry the BRACA gene. I can only imagine how awful it was to have to break the news to your daughters and sister.

I just want to wish you well and sympathise with both you and your husband. How sad that you both have cancer. Life just isn't fair. Good luck to each of you, with love to you both,

Solange 😊

[JayGeeCee in reply to Solange]

Thank you so much Solange. 🤞🏻🤞🏻🤞🏻he will make a full recovery.

Stay well

Joy x

[sticky3006]

Hello Joy, I too would take it if offered. I tried to get on Olaparib last year after frontline chemo as I'd read all the good stats on it. Unfortunately it wasn't licensed then. As I now think I'm heading into my first recurrence then I'll gladly take it afterwards. Good luck, sticky3006

[bluepeterella]

I am having the same dilemma over Niraparib - I am BRCA negative.

Having looked at all the stats I think (??) I would opt in for oliparib in your case, but I'm not so sure with the niraparib. I also want the luxury of being drug and side effect free for a while at least. Not much help sorry x

[JayGeeCee in reply to bluepeterella]

Please don’t apologise I can’t get insight from family and friends and knew I’d get sage advice from this brilliant forum.

Xx

[CShotz]

Hi Joy,

I have been on Olaparib for 7 weeks now. I had Breast in 2004, ovarian in 2016 which mets to my colon and peritoneum. I will not know how successful it is until scans in September. However, side effects are fairly tolerable. The worst for me so far has been fatigue and soft stools sometime diarrhea. I am seeing my oncologist tomorrow to discuss dosage reduction to help with those things. I think you should absolutely give it a go to see if it can help you slow progression. I'm of the mindset to try anything at this point to allow for a longer quality of life. Continue to be strong and good luck with your decision. Best, Carol

[MaggyH]

There is a closed Facebook group for all PARP inhibitors, there are lots of lovely ladies on there so you can ask any questions & there is lots of information about all the current PARPs, side effects etc.

This is the link

facebook.com/groups/1735008...

[Emsymits]

Hi. I'm so glad you've asked this question as I am wondering what to do after the recent announcement. I'm BRCA 1 and two years post finishing chemo. I'm back at the Onc in September so am wondering whether to push for it or not. I assume I'd qualify. I'm feeling ok so am also reluctant to go through side effects if I don't need to. Difficult eh? Oh for a crystal ball...