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AZD6738 with Olaparib

User
Posted 30 May 2016 at 23:03
Recently tested positive for the BRCA2 mutation and have now started on the above trial. Feeling really sick so wondered if others had the same problem and what anti sickness drugs worked best? Thanks. David.
User
Posted 23 Sep 2017 at 19:31
I’m talking about the forum on the Prostate Cancer Charity’s website when it was first introduced - the precursor to this forum. I may be wrong, but I don’t remember you being involved back then. Either way, my memory is that contributors regularly swapped doctor details - often to provide options to people who thought they had none. I have to say, knowing doctors and surgeons involved in treating prostate cancer as I do, I’d be amazed if any of them would sue for defamation on this site when people are simply passing on names. If you’re worried about defamation, you can have a different rule - perhaps limiting what you can say about advice they have given, rather than banning all information about them completely. Why would a prostate cancer forum have a rule that prevents contributors from suggesting doctors who might be able to help fellow sufferers? I’m only glad that the people who needed and wanted the information I was able to give got it before it was redacted. It doesn’t really matter who took the name out of my post, if you support this rule - and like to remind people of it - you are helping prevent people from getting information that could help them. Incidentally, why didn’t you remind me of this rule when I mentioned a doctor in a post you commented on in early 2016?
Once again, if anyone wants to know about the doctors who have helped me stay alive for 15 years when I was supposed to be dead within 2 years, ask me and I will tell you. If that gets me blocked from making further posts, my name is David Hillier. I work in the City. Google should do the rest.
User
Posted 25 Sep 2017 at 14:14

Hi everyone,


I'd like to give everyone a gentle reminder about the house rules for the community.


Our house rules are 'be supportive', 'be kind' and 'help us keep the community peaceful':


http://prostatecanceruk.org/get-support/using-the-online-community#house-rules


We ask all members to please look for opportunities to be supportive rather than opportunities for conflict.


Best wishes,


Carol


Digital Manager
Prostate Cancer UK

 


 

User
Posted 31 May 2016 at 09:20

Hello David. Sorry can't help with query but bumping your post in case somebody else can

We can't control the winds - but we can adjust our sails
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User
Posted 31 May 2016 at 09:20

Hello David. Sorry can't help with query but bumping your post in case somebody else can

We can't control the winds - but we can adjust our sails
User
Posted 31 May 2016 at 10:59
Thank you.
User
Posted 31 May 2016 at 11:03
Thanks for the advice. I'm back at the RM tomorrow so will get it addressed then. Just wanted to try to find out what had worked for others. I will try to post as the trial goes along. I'm hoping it works and reduces the met in my rib which is the biggest problem at the moment. Would be nice if I could ride my bike a bit as well, but I'll take whatever I can get! Thanks again. D.
User
Posted 01 Jun 2016 at 10:04
D
I was very interested to read your latest posts, firstly because somebody had the presence of mind to test you for BRCA2 and secondly because you have been taken onto the Opalarib trial.

I have done some on line studying with Bath and Glasgow University via future learn. Genetic profiling and testing was a major feature in the Glasgow based course with a lot of reference material linked to the research work being done by Professor De Bono at The Royal Marsden Hospital.

Statistically only a small number of men who are diagnoed with PCa are ever tested for BRCA1 or BRCA2 genes probably because it is perceived to be quite a rare connection. I suspect that in time it might be proven that the Men who sadly get this disease young are the most likely to have a faulty BRCA1/2 gene base.

This trial should prove that the profiling is a really good idea. If the profile questionaire results and subsequent analysis results are considered positive (Last I heard that criteria was one direct familial link and or multiple indirect familial links) Then treatment with drugs like Opalarib may offer the chance of full remission even for those with advanced metastatic disease. IF and that really is a big IF they are BRCA1/2 positive.

You may want to search for and read a thread started on here by Man with PC entitled Persistance worked. there is a link in that thread to a very interesting story of one man's journey through many trials and treatments the last of which was Opalarib after he tested BRCA2 positive.

As far as sickness goes there are lots of different anti sickness drugs out there, your trial nurse should be able to recommend and prescribe the most suitable one for you.

Please keep posting and let us all know how you are getting on, this really is ground breaking treatment and will be of interest to many people here.

My best wishes
x
Mo
User
Posted 01 Jun 2016 at 11:49

Hi Mo,
Lying on a bed at the RM waiting for anti sickness drugs, so hopefully things will improve from today.
I've been very lucky all the way through. Good doctors have made great calls with respect to treatment and I've been very responsive to treatments like Abiraterone.
I was offered genetic profiling right at the start because I was so young, but PARP inhibitors etc didn't exist then so it wouldn't have given me treatment options. Given that, I donated blood etc then forgot about it.
Johann has been saying for some time that he thought I was BRAC2. He tested once Abiraterone and Enzalutimide failed.
Hopefully Olaparib will work. If not, I think a repeat of Carboplatin is likely. Apparently BRAC2 responds well to that too.
I'll try my best to update you all.
Rgds,
David.

User
Posted 17 Sep 2016 at 08:02
So, I thought I'd post an update.
I've had four cycles of the two drugs now. Unfortunately it hasn't worked very well.
Some of the met in my rib has melted away, but other smaller mets have got a bit bigger.
Also, my PSA has risen to 91.
Given that, I was taken off the trial on Wednesday.
It's really frustrating because it was having an impact on my largest met, and the doctors in London and New York both think it's a dose issue (I was getting 200 of Olaparib a day rather than 400).
But I can't get on a trial that would give me that dose. Insurance won't pay as it isn't approved yet. Self funding would be £120k per cycle!
I guess the other thing is that Olaparib is hard work, so I'm not sure if I could handle the side effects of a higher dose if given in combination.
So, chemo is the only real option.
I've decided to double up and have carboplatin with a taxere as that worked so well for me all those years ago (probably because I'm BRCA2).
I don't mind that, but I know what's coming wrt side effects, and the impact that will have at work etc.
Ho hum. Guess I've just got to suck it up.
If anyone is interested, I will let you know how I get on.
In the meantime, if you're offered Olaparib, try to get the higher dose as that seems to be the level at which results improve significantly.
Good luck to you all.
User
Posted 17 Sep 2016 at 14:06

David, thank you for posting. I guess many of us have hopes for Olaparib. You certainly have had a journey and best wishes for your future treatment.


Martin

"And Rocky said, doc it's only a scratch. And I'll be better, I'll be better doc as soon as I am able"
User
Posted 17 Sep 2016 at 14:47
David
thanks for your update , I am really sad you have had to come off the trial, more so in the knoweldge that it is probably a dose size limitation issue.
Ironic that the medics are happy to put you back onto a taxere based chemo which is probably more harsh than the higher dose of Opalarib. It's a shame that the trials across the World all seem to be different but I guess that is why they are called trials? I think the big breakthrough they are searching for is a combination of targeted gene therapy with an agent that delivers it straight to the cancer every time. It does sound as though Opalarib has the potential to completely clear mets if it gets right to them and there is a high enough dose to reach all of them.

At least you know the chemo combi worked for you before and I sincerely hope it does again.

Please do let us know how you are getting along.

sending you best wishes
xx
Mo
User
Posted 28 Jan 2017 at 10:08

So, a quick update for anyone that is interested.


I've just started the sixth cycle of carboplatin and docetaxol.


Side effects as per usual - week one taste and mouth are terrible so i can only really eat sugary things, meaning weight has increased dramatically. I know i shouldn't worry about this, but as a former skinny cyclist who plans to get back on the bike, i do. A lot.


Things improve in week two so that i go back to work. Week three is better still and i start to dream that i will soon be able to go for a ride again, but then, of course, its time to go again on the chemo.


Tiredness has been an issue recently, so i had a blood transfusion the day before the latest cycle. First time i've had to do that, but i was feeling very tired. If a i can just break my collar bone now, I'll have done all the things a professional cyclist does (i had EPO during my first dance with chemo 14 years ago)!!


As for effectiveness of the treatment, the first three cycles didn't do much to PSA - that stayed at around 90. The last two cycles have brought it down fairly steadily so that it is now at 52. Very pleased with that.


Bone mets improved after about three cycles. There has been some improvement since then, but the change has been more marginal.


The pain in my largest met (in a rib) usually disappears during week one of the cycle then starts to come back a little. It always hurts a lot after an MRI as the bone is essentially permanently fractured and doesn't like the vibration associated with the scan. 


I've asked a lot about removing the rib, but no-one is keen to do that. I might pursue that further. Has anyone tried something similar?


Apart from that, potassium and magnesium have been low - so I'm taking supplements to resolve that.


Oh, i almost forgot. I had neutropenic sepsis in the first cycle that led to a week in hospital - my fault as i went to work in week one of the cycle and picked something up when my white blood count was low. I now have injections to boost white blood cells and have to wear a mask when travelling on the tube/train.


Will try to update again after a few more cycles. They are talking about taking a break but i want to go on until the PSA is back down into the normal range, even if that means having more blood transfusions. To me a break from the treatment means a break for the cancer which doesn't make sense.


Hope this helps.


Regards,


David.

User
Posted 28 Jan 2017 at 14:14

You might be waiting a long time if you are expecting the chemo to lower the PSA - often the chemo makes the PSA rise.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Jan 2017 at 15:37

I'm not really expecting anything on the PSA front - more like hoping it continues the downward path its on. After 15 years of treatment i know all about the possible impacts on PSA - but it looks like the flare stage is over, thank goodness. Bone met progress is front of mind at the moment.

User
Posted 28 Jan 2017 at 17:01

Originally Posted by: Online Community Member
I've just started the sixth cycle of carboplatin and docetaxol.


Side effects as per usual - week one taste and mouth are terrible so i can only really eat sugary things, meaning weight has increased dramatically. I know i shouldn't worry about this, but as a former skinny cyclist who plans to get back on the bike, i do. A lot.


David,


Have you tried sucking frozen pineapple chunks and ice cubes whilst having your docetaxel infusion? I can't tell you it definitely works. I can tell you I have done this on each of my 4 docetaxel infusions and food and beer still taste great. Therefore, I'm able to follow my normal diet with the effect that my weight has increased by 2.5lbs since before starting chemo, which isn't bad since like you I'm on steroids with the chemo.


You can read more in my thread here:


http://community.prostatecanceruk.org/posts/t12197-Docetaxel-Chemo---the-highs-and-the-lows#post152202


David

User
Posted 28 Jan 2017 at 17:09

Beware, prednisolone stimulates the appetite!
AC

User
Posted 28 Jan 2017 at 19:44
Thank you David, I'll try that.
D.
User
Posted 28 Jan 2017 at 19:47
I'm on DEX AC. Then back to hydrocortisone for adrenal insufficiency caused by taking pred/Dex while on Aburaterone. Same effect tho. That plus the taste thing means it's only really sweet things that taste good in the first week. Oh and that ive gone from cycling 100 miles per week to zero. Last is probably the most important. At least that's what I tell myself when I'm having another bowl of custard. Haha.
User
Posted 29 Jan 2017 at 13:20

A little more detail on my taste protection measures.
I have a small vacuum flask. I take 18 ice cubes and 6 frozen pineapple cubes. The docetaxel infusion takes one hour. I suck 3 ice cubes followed by one pineapple cube every 10 minutes. The ice cubes are a bit cold to keep in the mouth until dissolved so I spit them out into the vacuum flask cup a couple of times and put them back in my mouth after about 5 seconds. The plops of ice cubes into cups hasn't driven my fellow chemo infusers on the ward mad as yet and no one has beaten me up (mind you I'm 6' 5" and physically fit so that might have something to do with it). http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Edited by member 29 Jan 2017 at 13:23  | Reason: Not specified

User
Posted 19 Sep 2017 at 21:14
So, quite a bit has happened since my last post. I managed to complete eight cycles of chemo but, by the end, I was having to have blood transfusions all the time, and my blood tests more generally indicated it was time to stop.

That was very frustrating as my PSA had fallen sharply from the peak of around 90, and I think a couple more cycles would have put it into low single figures. Anyway, it wasn’t to be, and, after some initial disappointment, I was ultimately glad to have stopped. I really was very run down.

The big problem was, of course, that the cancer wasn't having some time off. In fact, it had used the period of the Olaparib trial and the chemo experiment to spread itself out. Having started out as a relatively small dot on a rib around half way up my back 14 years earlier, it had now arranged itself over three ribs, a chunk of spine, and onto my lung.

So surgery was the only option - as an aside, I really wish I'd pushed harder for this in the early days as it would have saved me a lot of trouble, but I couldn't convince anyone to do it at the time. Oh well. The good news is that I now know a fantastic thoracic and neurological surgeon, with the latter suggesting he can get rid of a little met on one of my vertebra simply by injecting it with surgical cement should that prove necessary.

The resection of the ribs, spine etc. took place in May. Since then, I've had to cope with gastro-intestinal issues caused by the use,of opioids; to wean myself off fentanyl and tramadol, and lots more besides. I wouldn't describe any of that as fun.

The biggest issue has been a problem with my abdominal wall. In simple terms, my stomach etc. is not being held in place by my abdominal muscles because they are not being controlled by the normal nerves - nerves that were removed during the operation.

I'm having physio, and electro-pulse therapy might help, but imagine I will have to have another operation at some point to resolve this. In the meantime, I'm wearing a cut down hernia belt to hold everything in place during the day.

This does a reasonable job and has helped me get back to work - although there is a large bulge in the front of my work shirts, and I've had to move up a size on the clothes front to allow space for this contraption.

I guess the big question, then, is was it all worth it? The answer to that, even at this stage is a resounding yes. My PSA has fallen to 0.64, and has been edging down slightly over the last three readings. There are still some issues to work through, and it was as painful as hell when i first had it done, but i can now see a future that didn't appear to exist a few months ago. And that makes it all worthwhile … and then some.

If anyone has any questions about what I've had done and/or is considering a similar operation, I'd be more than willing to try to answer them/give advice.

Let me know. David.
User
Posted 21 Sep 2017 at 10:00

You have been through the mill to say the least. It's frustrating and scary that while your PSA was coming down on Chemo that the mets continued to grow. I would hope someone else who knows about this more than I do will comment on that side of things.


Best wishes, Ian

User
Posted 21 Sep 2017 at 17:24

Just read your post and your bio, I hope you don't mind, my husband was diagnosed in 2015 at 40 with advanced prostrate cancer PSA 469. He is on ezalutamide at the moment but his latest bloods show a PSA rise from 5.8-19, we are going to ask about the gene testing on our next appointment on the 25th, following advise given in a phone call to prostrate cancer UK yesterday.

We wish you well and sending our love.

Regards Nicola and Kieron

User
Posted 21 Sep 2017 at 17:54
Good luck with the test - hopefully it will lead to another treatment option. I went on the Olaparib trial at the Marsden. My oncologist thinks it would have worked with a higher dose.
User
Posted 21 Sep 2017 at 18:16

Thank you. It is very rare to find someone (thank god) who was diagnosed so young like Kieron and yourself. Your bio has really boosted kieron's morale after the disappointment of his latest blood results. We are being treated at The Christie. We are really interested in the gene testing as kieron's mum had breast cancer 14 years ago, which can be linked to the BRCA1 gene. Kieron has Mets to 6 ribs, his pelvis, his spine in three place, right thigh bone, right arm and left eye socket. I see you mention the injections of cement to bone Mets. Could you let me know more on this please.

Regards Nicola

User
Posted 21 Sep 2017 at 18:20

The best thing to do would be to speak to ********** - who I see at the Wellington. He is the surgeon who told me this could be done. He is very good.

Edited by moderator 21 Sep 2017 at 22:40  | Reason: Not specified

User
Posted 21 Sep 2017 at 18:40

Thank you I will do.

Regards Nicola and Kieron

User
Posted 21 Sep 2017 at 19:53

We have very few rules on here but naming your medical professionals is a big no-no. This would have been in the information you agreed to when you joined the forum.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Sep 2017 at 18:07
It’s rules like these, and the joy certain people appear to get from reporting and enforcing them that prevent me from spending more time here. Which is a shame because I’ve got quite a lot of experience that might help people. I used to prefer it in the old days - when the chat room was part of the PCC’s website. Those were the days when my friend Andy Ripley was a wonderful light around which we all gathered; people were just trying their best to help each other; there was no one who thought they knew most about every aspect of PCa - especially if they hadn’t actually had it; and no one who tried to tell others what they could and couldn’t pass on. If anyone would like to know the details of any/all of my doctors, please contact me and I will gladly pass them on in the hope ithey might be able to help you. If anyone is going to be offended by that, shame on you - we sufferers need all the help we can get.
User
Posted 23 Sep 2017 at 18:13

It isn't about being offended, and you know as well as I do that naming doctors and hospitals was against the rules on the old forum as well. These message boards are open to idle searchers these days - there is no need to join to be able to read the posts - so the charity would be vulnerable if any doctor or hospital was defamed and chose to sue.

As it happens, I didn't report you ... the moderators must have spotted it all by themselves.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Sep 2017 at 19:31
I’m talking about the forum on the Prostate Cancer Charity’s website when it was first introduced - the precursor to this forum. I may be wrong, but I don’t remember you being involved back then. Either way, my memory is that contributors regularly swapped doctor details - often to provide options to people who thought they had none. I have to say, knowing doctors and surgeons involved in treating prostate cancer as I do, I’d be amazed if any of them would sue for defamation on this site when people are simply passing on names. If you’re worried about defamation, you can have a different rule - perhaps limiting what you can say about advice they have given, rather than banning all information about them completely. Why would a prostate cancer forum have a rule that prevents contributors from suggesting doctors who might be able to help fellow sufferers? I’m only glad that the people who needed and wanted the information I was able to give got it before it was redacted. It doesn’t really matter who took the name out of my post, if you support this rule - and like to remind people of it - you are helping prevent people from getting information that could help them. Incidentally, why didn’t you remind me of this rule when I mentioned a doctor in a post you commented on in early 2016?
Once again, if anyone wants to know about the doctors who have helped me stay alive for 15 years when I was supposed to be dead within 2 years, ask me and I will tell you. If that gets me blocked from making further posts, my name is David Hillier. I work in the City. Google should do the rest.
User
Posted 24 Sep 2017 at 19:45

When you sign up to rules, fella, stick to them. Snide remarks about the probably most helpful contributor on the site are not welcome.

AC

User
Posted 25 Sep 2017 at 14:14

Hi everyone,


I'd like to give everyone a gentle reminder about the house rules for the community.


Our house rules are 'be supportive', 'be kind' and 'help us keep the community peaceful':


http://prostatecanceruk.org/get-support/using-the-online-community#house-rules


We ask all members to please look for opportunities to be supportive rather than opportunities for conflict.


Best wishes,


Carol


Digital Manager
Prostate Cancer UK

 


 

User
Posted 28 Sep 2017 at 23:27
Hi David, I'm pretty new on my journey diagnosed June N1M1. 51yr old. Would really like to hear more about your surgery experience as it's something I have discussed with my Oncologist who prefers to follow the protocol of hormones & chemo, which I have no problem with but keep hearing stories of surgery and RT making a difference.

Regards
User
Posted 03 Aug 2018 at 10:54

It’s been quite a while since I last posted, so I thought I’d give an update for anyone who is interested. Hopefully, I can remember everything that’s happened - if not, I’ll post additions later on. First off, my brother was diagnosed - the genetics are obviously a factor in our family (BRAC2), so now the wider family is having to be tested etc. Fortunately for my brother, it was caught early (he was having regular tests because of my situation), and it looks like removal has done the trick. Fingers crossed.


As far as I’m concerned, the operation pushed the PSA down to negligible levels and kept it there for around 10 months. After that, it started rising again - not to a particularly high level, but the doubling rate was pretty short. An MRI suggested the increase was entirely related to activity in T6 - the vertebra directly above where some of my spine was removed. Long story short, I had cyberknife on that area in early June, and fully expected that to do the trick. It didn’t, my PSA is up again, and a further MRI showed it had had no effect on the vetebra. Other hot spots have also emerged. Apparently, the PARP inhibitor that I trialled (Olaparib) makes radiotherapy less effective. 


So, I am now faced with limited choices. More chemo (cabazetaxel) and/or an immunotherapy trial have been suggested at the Marsden. Further operations have been discouraged as there are a number of active spots and I’m still not fully recovered from my last procedure (largely because of the removal of nerves that has affected my stomach wall, breathing etc). 


I spoke to the spinal surgeon ahead of the cyber knife and he told me that trying to kill the mets with heat wasn’t a runner as death of the entire tumour, rather than just the edges, cannot be guaranteed (slightly different from what he said last time). He can take out T6 if that’s needed, but we are not there yet.


I’m thinking about all the possible options - radium 223 seems like a good initial option, while an internet search throws up PSMA guided radioisotopes, checkpoint inhibitors, other PARPS, big shots of testosterone etc. I’d forgotten how tough it is trying to become an oncologist over the course of a few days! I’m also in discussions with my doctors in the US about what to do next. If anyone has any suggestions, or experience of the above/other treatments, please feel free to let me know. 


To end on a good note, I rode a bike for the first time in three years a few weeks ago. A glorious sunny day with my friend in Exeter.  What a fantastic feeling. I plan to do a lot more of that.


D 

User
Posted 03 Aug 2018 at 14:12

Sorry you are faced with more treatment. You’ve had quite a journey so far.


It sounds like you have options which is good.


Keep riding that bike!


Ian

User
Posted 03 Aug 2018 at 14:17

Thanks Ian. 


Staying in the game is what it’s all about - something usually comes along when you least expect it. 


I’m planning on lots more bike stuff - hoping that whatever comes next doesn’t get in the way of that. 


User
Posted 03 Aug 2018 at 19:05

Please Keep posting ,love your style


Sorry to hear that things have not worked out so far,


But never mind  you always seem to find other options 


Good luck


Barry

User
Posted 03 Aug 2018 at 20:46
D, Sorry to read this but keep battling on. A couple of bits of advice - the first is to be very chary about high dose testosterone. It (the flood and starve routine) seems to work for a limited subset of patients. You may recall Si trying it without success. The second idea comes out of recent experience of mine. I've been having Cisplatin chemo to deal with bladder cancer mets, mainly in my liver, where after three cycles very marked progress is evident. Be that as it may, it is evident that the platinum component of this chemo is very effective for some patients with PCa. I have a met or possibly a remnant of my original tumour in my urethra left behind when my prostate was removed six years ago. I have had three three weekly cycles of this chemo which has knocked my PSA down from 6.4 to 1.3, less of a cut with each cycle, but great progress all the same. Furthermore, I can feel the tumour receding as I trace the urethra through my scrotum. So I have two bits of consistent evidence that the chemo is effective for PCa treatment.

You might talk to your consultant about trying it.

Good Luck

AC
User
Posted 04 Aug 2018 at 14:48

Thanks AC. 


The two previous rounds of chemo worked very well - so I’m not averse to going again. Just not looking forward to feeling sick all the time. But then it would only be one treatment this time round. Hmmm. Good luck to you. D. 

User
Posted 04 Aug 2018 at 23:28
hi David just a quick question regarding the immunotherapy trial you last mentioned do you happen to know the name of it ..
many thanks kev
User
Posted 05 Aug 2018 at 08:30

Hi Kev. 


I’m not sure yet.


My consultant is having a think about it, and I’ve asked for advice from my two oncologists in the US.


Will let you know when I do. 


D. 

User
Posted 05 Aug 2018 at 22:03
hi David thanks for that just that with speaking to my onco on friday he was also talking about a trail which sounded very similar to the one you mentioned it was called Gallahad ...
so if you do get any info much appreciated ..

kevo
 
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