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Starting olaparib

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User
Posted 09 Aug 2023 at 13:36

I have been told today that I can start on olaparib next week after it has been shown I have the 'correct' gene mutation. Has anyone had any experience of this new drug? Side effects etc.

User
Posted 10 Aug 2023 at 20:04

Someone close to me is on it and has been for a couple of years now.

The list of potential side-effects is quite long and some of them are quite scary-sounding, but that doesn't mean any or all of them will apply in your case. Everyone's different.

You will probably have monthly blood monitoring and followups for the first year. After that, if your numbers are OK, they might start pushing it out to two-monthly, then three. It does feel a bit weird going to collect a 3-month supply of meds worth about 12 grand, but you get used to it. 😂

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 09 Aug 2023 at 19:57

Hi there - i think this is pretty cutting edge stuff, so am not surprised there are no replies yet. It is great it is being made available. I hope it goes well and side effects are minimal. 

User
Posted 09 Aug 2023 at 20:29

No, NHS. My oncologist is rather pleased that I am his first patient to be offered it. Herefordshire based so even us boys out in the sticks are at the cutting edge 💪.

User
Posted 10 Aug 2023 at 03:37

It only came about because I noticed on this site that it had been approved for use on the NHS and I mentioned it to my oncologist. Enzalutamide had just failed for me (PSA from 11 to 113 in 12 weeks) and I was suffering from bad bone pain and I was clutching at straws. I am stage 4 but they don't seem to mind chucking money at me with MRI and PSMA scans galore over the last couple of years. I do have a history of cancer in the family but not prostate and as far as I can remember I have never mentioned it to my oncologist. I know we can't name names on this site but he has been an unbelievable ally over the last 6 years and has the ability to make you think you are the most important patient he has.

Anyway he took the trouble to get my biopsy analysed they found I had the BRCA mutation. Also we have two sons and my OC is already planning gene counselling for the family so they can be better prepared when they get older. 

To sum up, I think going to meetings armed with knowledge gained from this site is very useful but above all it has rested on an oncologist who really cares and is prepared to throw his budget at me. Also I think being only 59 helps and I am worth persevering with, and can handle side effects better than someone who is older.

Edited by member 10 Aug 2023 at 03:45  | Reason: Not specified

User
Posted 10 Aug 2023 at 08:26

You are so lucky having and oncologist like that…good luck with the treatment.

Derek

User
Posted 19 Oct 2023 at 15:58

Update. I have been on olaparib for 10 weeks now. All my bone pain has gone and I have weaned myself off oxycodone. It hasn't helped bring my PSA down, just slowed the rate of advance. The main side effects are fatigue and sometimes feeling slightly nauseous but that's better than the alternative! I can only work part-time as I feel so tired in the afternoon. Hopefully that will improve over time.

User
Posted 27 Oct 2023 at 09:03

Hi baby

I know exactly where your coming from my psa is on the rise with me just finishing 14months on enza but I feel moderately well with scan results not showing any further progression,my onco says that my psa at 13.5 is still 1 percent of when I was diagnosed 18months ago so we must take the positives from it and enjoy life.

Regards phil

User
Posted 15 Dec 2023 at 21:21

My Oncologist shouted at me in the chemotherapy room,when I asked him how long I had to live on average, so you are lucky.

User
Posted 21 Dec 2023 at 20:32

Further update: found a compression fracture in L2 which is I suppose is better than MSCC. Treated with one fraction of radiotherapy. No more radiotherapy in the pelvic area now as that is my limit down there.

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User
Posted 09 Aug 2023 at 19:57

Hi there - i think this is pretty cutting edge stuff, so am not surprised there are no replies yet. It is great it is being made available. I hope it goes well and side effects are minimal. 

User
Posted 09 Aug 2023 at 20:24
Hi

Did you do a private gene test ? I asked for one for my Husband, but we were denied.

User
Posted 09 Aug 2023 at 20:29

No, NHS. My oncologist is rather pleased that I am his first patient to be offered it. Herefordshire based so even us boys out in the sticks are at the cutting edge 💪.

User
Posted 09 Aug 2023 at 21:11
Did you ask for the test , or was it your OC ?

Do you have cancer history in your family?

We live in Yorhshire, so I know that Jimmy's do it.

Maybe because my Husband is stage four, they don't want to spend any money on him ?

Does anyone on PCUK know of any private clinics that would offer this service?

Thanks in advance.

User
Posted 10 Aug 2023 at 03:37

It only came about because I noticed on this site that it had been approved for use on the NHS and I mentioned it to my oncologist. Enzalutamide had just failed for me (PSA from 11 to 113 in 12 weeks) and I was suffering from bad bone pain and I was clutching at straws. I am stage 4 but they don't seem to mind chucking money at me with MRI and PSMA scans galore over the last couple of years. I do have a history of cancer in the family but not prostate and as far as I can remember I have never mentioned it to my oncologist. I know we can't name names on this site but he has been an unbelievable ally over the last 6 years and has the ability to make you think you are the most important patient he has.

Anyway he took the trouble to get my biopsy analysed they found I had the BRCA mutation. Also we have two sons and my OC is already planning gene counselling for the family so they can be better prepared when they get older. 

To sum up, I think going to meetings armed with knowledge gained from this site is very useful but above all it has rested on an oncologist who really cares and is prepared to throw his budget at me. Also I think being only 59 helps and I am worth persevering with, and can handle side effects better than someone who is older.

Edited by member 10 Aug 2023 at 03:45  | Reason: Not specified

User
Posted 10 Aug 2023 at 08:26

You are so lucky having and oncologist like that…good luck with the treatment.

Derek

User
Posted 10 Aug 2023 at 18:39
Thankyou for your reply, I wish we had an OC like yours !

Our OC says PSMA scans are only used for recent PC diagnosis ? Idon't believe him.

When I mention ANYTHING new, he just rolls his eyes, and says keep off Google......

I could scream sometimes, maybe we should ask for a second oppinion ?

The fact that we don;t see him 'face to face ' very often dosn't help either.

I feel like my Husband is missing out.

User
Posted 10 Aug 2023 at 18:45

My PSMA scan was done five years after diagnosis to target my radiotherapy so I would challenge that. 

User
Posted 10 Aug 2023 at 19:09
I am writing all this info down, so I can bring it up at our next appointment.

Thankyou

User
Posted 10 Aug 2023 at 20:04

Someone close to me is on it and has been for a couple of years now.

The list of potential side-effects is quite long and some of them are quite scary-sounding, but that doesn't mean any or all of them will apply in your case. Everyone's different.

You will probably have monthly blood monitoring and followups for the first year. After that, if your numbers are OK, they might start pushing it out to two-monthly, then three. It does feel a bit weird going to collect a 3-month supply of meds worth about 12 grand, but you get used to it. 😂

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 14 Aug 2023 at 17:58

Originally Posted by: Online Community Member

I have been told today that I can start on olaparib next week after it has been shown I have the 'correct' gene mutation. Has anyone had any experience of this new drug? Side effects etc.

Good job I have been offered this as PSA gone from 113 to 350 in 6 weeks after enzalutamide failed!

User
Posted 14 Aug 2023 at 18:29

Originally Posted by: Online Community Member

Good job I have been offered this as PSA gone from 113 to 350 in 6 weeks after enzalutamide failed!

Have you started taking it yet? Hope it works well for you.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 14 Aug 2023 at 20:51

Tuesday morning. I will report in after a couple of weeks 🙏

User
Posted 15 Aug 2023 at 01:32

Originally Posted by: Online Community Member

Tuesday morning. I will report in after a couple of weeks 🙏

Best of luck for starting the new treatment, I hope it works out really well for you. 

Sounds like you have an amazing oncologist, we felt the same with our urological surgeon. Felt like we were his only patient and any questions I email I get an answer from him the same day…it makes such a difference.

 

Starsycat - I would be seeing if I could be referred to a different oncologist. It’s difficult enough having to go through this without feeling they are not on your side and rolling their eyes at you! 

 

User
Posted 17 Oct 2023 at 21:19

I am reading all this with interest. My dh has the brca2 gene. His daughter found out a few years ago after having breast cancer very young. Dh’s prostate cancer has now returned 9 years after brachytherapy. We didn’t know he had the gene when he was diagnosed. I’ve been reading that it’s much harder to treat with this gene mutation. Do we ask for other drugs or stick with the zoladex? I’ve read zoladex can be castrate resistant. 

User
Posted 19 Oct 2023 at 15:58

Update. I have been on olaparib for 10 weeks now. All my bone pain has gone and I have weaned myself off oxycodone. It hasn't helped bring my PSA down, just slowed the rate of advance. The main side effects are fatigue and sometimes feeling slightly nauseous but that's better than the alternative! I can only work part-time as I feel so tired in the afternoon. Hopefully that will improve over time.

User
Posted 20 Oct 2023 at 09:21

That's promising news Babychambulls  let's hope you can continue to take olaparib for as long as you possibly can,I'm hoping that my next treatment will be this drug rather than going straight to chemo.

All the best Phil.

User
Posted 20 Oct 2023 at 17:54

Hi

we are based in Yorkshire & stage 4, my husband had generic test done through sheffield children’s hospital - arranged by onco.   I will look for the name of the department if it helps,  they were very good .

 

tracey 

Tracey 

User
Posted 26 Oct 2023 at 18:04

Hi babychambulls

What's your psa doing then at the moment?

My husband is brca2 positive and been on olaparib nearly 12 weeks.

His PSA took a few weeks to start slowly coming down but now after only 8 further weeks it's increasing again.

It's so disheartening, I thought this would be our lucky thing. 

 

Mrs MAS

User
Posted 26 Oct 2023 at 20:21

It has just slowed the increase. I have a blood test next week so I will update then. To be honest I don't worry too much about my PSA now, l care more about how I feel on a day to day basis which has improved massively since I started olaparib. However I can still feel rough on some days but I put that down to side effects of the drug. 

 

User
Posted 26 Oct 2023 at 20:27

Thanks, Allan has some rough days too.

My worry is that if his psa increases the oncologist is going to stop olaparib and offer palliative chemo.

 

Mrs MAS

User
Posted 27 Oct 2023 at 09:03

Hi baby

I know exactly where your coming from my psa is on the rise with me just finishing 14months on enza but I feel moderately well with scan results not showing any further progression,my onco says that my psa at 13.5 is still 1 percent of when I was diagnosed 18months ago so we must take the positives from it and enjoy life.

Regards phil

User
Posted 27 Nov 2023 at 19:02

He sounds just like my Oncologist 

User
Posted 15 Dec 2023 at 18:28

Hi Babychambu,

I am being investigated  for the  BRACH genes ,to see if I am suitable for OLAPARIB, hence my interest in this matter.

I have just had my 9 cycle of Cabazitaxel , out of ten.  The  limit is ten.  I am trying to find out what is available

once Cabazitazel comes to an end.

 

Thanks

PISSU

User
Posted 15 Dec 2023 at 21:21

My Oncologist shouted at me in the chemotherapy room,when I asked him how long I had to live on average, so you are lucky.

User
Posted 20 Dec 2023 at 20:11

Update - PSA down to 300 from 450 in early December. However on Monday 18 December over about 20 minutes I developed the most incredible back pain. The NHS pulled out all the stops and I had an MRI scan yesterday which revealed metastasis next to my spine so one dose of radiotherapy tomorrow. I can't praise the NHS enough in sorting out things so quickly. However it shows the olaparib is failing so my next conversation with my oncologist won't be great as we are running out of bullets.

User
Posted 21 Dec 2023 at 20:32

Further update: found a compression fracture in L2 which is I suppose is better than MSCC. Treated with one fraction of radiotherapy. No more radiotherapy in the pelvic area now as that is my limit down there.

 
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