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Ipatasertib Trial - Experiences? - Ipatersertib,Abiraterone (Abi),Ipatasertib

User
Posted 17 Feb 2018 at 14:21

Hello All,

I have been offered access to an on-going Phase 3 trial of Ipatasertib, combined with Abiraterone/Prednisol.

I wondered if anyone else is already on this, and what their experiences are?

Its a commercial trial, with half on a placebo. The monitoring is quite intensive.

(My cancer is graded T3 G6+9 N1 M3, treated initially by radiotherapy and then for 3 years on Prostap. Now spread to bones, so additional treatment is proposed).

Thanks!

User
Posted 18 Feb 2018 at 14:58

Hi - it has been running for about a year which is reassuring - if there had been awful side effects or men were doing worse than expected the trial would have been stopped by now. So presumably, men on the trial are doing as well as or even better than the control group. Some men take the view that once you start to run out of treatments, any trial options have to be worth serious consideration if only for the extra monitoring.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2018 at 10:47

Thanks, Lyn. I'm already worried about going on to the recommended Abiraterone/Prednisol - although others here have reassured me that it needn't be a bad experience. So the prospect of another powerful drug on top of that is a bit daunting - especially as I am currently doing very well on Prostap.  Except that its gradually no longer working!   The other issue for me is that commercial trials like this are heavily monitored - this may suit some people at different stages, but I really want to limit hospital visits as much as I can for as long as I can, and make the most of whatever time I have left. Added to which its a Placebo-controlled trial - so I'll never know whether I benefited from the real thing. (- although of course, altruistically, my results may help others in future..).  A lot to think about, but thank you !

User
Posted 10 Jan 2019 at 19:39
My husband had letter today to say PSA was 3.1 on 19 Dec 2018 that is down from 11 on 28 Nov 2018 when Enzo was started. So quite a drop in 3 weeks. The lowest it had got to on Abi was 3.5. So we are both very happy with progress.
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User
Posted 18 Feb 2018 at 14:58

Hi - it has been running for about a year which is reassuring - if there had been awful side effects or men were doing worse than expected the trial would have been stopped by now. So presumably, men on the trial are doing as well as or even better than the control group. Some men take the view that once you start to run out of treatments, any trial options have to be worth serious consideration if only for the extra monitoring.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2018 at 10:47

Thanks, Lyn. I'm already worried about going on to the recommended Abiraterone/Prednisol - although others here have reassured me that it needn't be a bad experience. So the prospect of another powerful drug on top of that is a bit daunting - especially as I am currently doing very well on Prostap.  Except that its gradually no longer working!   The other issue for me is that commercial trials like this are heavily monitored - this may suit some people at different stages, but I really want to limit hospital visits as much as I can for as long as I can, and make the most of whatever time I have left. Added to which its a Placebo-controlled trial - so I'll never know whether I benefited from the real thing. (- although of course, altruistically, my results may help others in future..).  A lot to think about, but thank you !

User
Posted 25 Apr 2018 at 20:18

I've just started on this trial, IPATential150, at Leicester Royal Infirmary. It's early days, not quite two weeks, but so far so good, I've not had any ill effects.

Travelling has been a bit of a chore (It's a 60-odd mile round trip) what with multiple visits for blood tests and CT & Bone scans, but it will hopefully settle down now.

 

Edited by member 05 Jul 2018 at 16:37  | Reason: Not specified

User
Posted 27 Apr 2018 at 21:27

Very interested in this as my husband is being considered for this trial. If he is accepted then treatment should start in about 2 weeks time. Still many appointments before we will finally know. Obviously as it's a double blind we won't know if he is on the drug or not BUT he will be having Abiraterone/Prednisol which seemed the best choice anyway.

Following Chemo his PSA has just been rising and rising. 1.1 at end of Chemo. 2.2 after another 5 weeks and kept going up each time so needed to go onto something extra. Up to 14 last time and probably even higher now. Scans aren't showing that much worse but will have more scans next week so wait and see. He is very well in himself but the rate of increase in PSA does seem to need to be addressed

Would be very interested to compare notes Nevyn. We aren't too far from where he will have treatment but having just been sent the schedule of appointments for the next month it does seem a bit overwhelming.

User
Posted 16 May 2018 at 20:36

My husband started this trial today so will see what effect it has.

User
Posted 16 May 2018 at 22:24

I've just started cycle 2 this week. PSA is down to 1.6. Side-effects are minor so far, just the occasional bit of diarrhoea. Blood sugar has remained normal too so I'm happy.

Hospital visits are less frequent now, at 2 weeks interval. Already got another bone scan lined up for 3 weeks time.

User
Posted 13 Jun 2018 at 14:43
My husband has started cycle 2 today. PSA has reduced from 25 (at start of this treatment) to 12 two weeks into treatment. We had been told no PSA test until today so pleasantly surprised. No side effects to note.
User
Posted 05 Jul 2018 at 16:30
I'm now well into cycle 3 and my PSA has dropped to 0.67 (was 9.6 in March). Side-effects are still pretty minor, no nausea but the occasional bout of diarrhoea. It has put my blood pressure up a bit though, so for the first time ever I'm now on pills for that too... Bloods are still OK and blood sugar has remained normal thankfully.

I had a 2nd set of CT and Bone scans in early June which show no further progression.

I've also just had a whole-spine MRI as I've had the occasional bit of back pain and 'tingles' in my right thigh. (I had this in February as well and was admitted with a suspected cord compression - See bio).

User
Posted 05 Jul 2018 at 17:37
Thanks Nevyn for the update and pleased to hear mostly positive. My husband was also put on blood pressure pills on our visit cycle 2 day 15. Told it's likely to be the Abiraterone so similar to you. He's now had his scans and should get the results next week which will be the start of cycle 3. At the beginning of cycle 2 PSA was down to 9.4, at least going in the right direction. No obvious side effects.

Hope the results of the MRI are OK.

User
Posted 11 Jul 2018 at 21:20
Start of cycle 3 today. Scans sort of OK. CT shows a very slight improvement of node they are measuring and bone scan seems stable. Unfortunately potassium has now gone low and so he's on supplements. Also blood pressure seems to be even higher! We did not realise that having been told not to take any pills before hospital visit that excluded blood pressure pills. Should find out PSA in a couple of days.
User
Posted 26 Jul 2018 at 09:30
Started cycle 4 last Monday (23rd July). Bloods are all OK and side-effects remain minimal. Blood pressure is reduced and stable if you discount my 'White Coat Syndrome' :) so I self-measure at home and keep a diary to show them. Like you I was not taking ANY pills on hospital days. Oops. Now I just avoid the trial drugs...

PSA had gone up slightly to 0.76 on my last fortnightly visit which I hope is just a blip, haven't got Monday's yet. The MRI scan showed no new problems which is good and I've not had any pain or tingles for a while now. Next CT and bone scans are booked for 3rd August so it looks like 8 week intervals.

Oh and as of cycle 4, visits are now 4-weekly.

User
Posted 10 Aug 2018 at 22:47
Started cycle 4 Wednesday. PSA was down to 3.9 so still going in the right direction but a bit slower. Low potassium again even with the supplements so just told to eat even more bananas.How many can he eat in a day? often it's already 3 so need other things. Spinach and broccoli - most days but I think he is just not absorbing it anymore. Possibly if we see a different doctor next time they might have some more ideas. Other bloods all OK. Scans for end of August so should get the results of them cycle 5.
User
Posted 28 Aug 2018 at 21:11
Started cycle 5 last week (20th August).They didn't do a PSA test last time, but the good news is that this time it's back down to 0.63, hopefully that carries on. Even better news is the new mets in L3 and lower-right ribs which had appeared in the April scans have regressed and are now clear! I had been getting a few pains and some discomfort and was worried that it was getting worse. I guess it was due to the tumours shrinking which is a relief...

Bloods are all OK and blood sugar remains normal so it looks like I'm tolerating the drugs quite well.

User
Posted 28 Aug 2018 at 22:50
That all sounds really good and hopefully will continue. Scans tomorrow for my husband.
User
Posted 28 Aug 2018 at 22:52
Good luck
User
Posted 05 Sep 2018 at 19:29
Scans OK BUT Liver Function Tests have gone high ALT and AST. Have to go back next week for more blood tests. Really feeling down over this. Don't know if he can continue on trial and if not what else is possible. He is so well in himself and we had hoped to go on holiday next week but seems unlikely now.
User
Posted 11 Sep 2018 at 16:47
Not good news. Liver Function Tests still high so come off both drugs and back next week for more blood tests.
User
Posted 11 Sep 2018 at 21:04

Hi,

Hopefully, the pause in treatment will enable your liver function to return to acceptable parameters. 

Best regards

User
Posted 11 Sep 2018 at 22:07
Sorry to see your update, hiitsme - hopefully there will be a plan C soon
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Sep 2018 at 22:06
Thank you Orm123 and LynEyre

I was just feeling down as we had agreed that we would sort holiday as soon as scans were back and OK as this would have been the first month without hospital appointments for the last 18 months. I was just feeling selfish as it's me that wants a break.

Should find out a bit more Monday when we go back for blood tests. If the liver tests are better then there is still a chance of going back on the trial but at a lower level. The scans have been OK and the PSA has come down each month so drugs were working but liver toxicity is not a good idea so we will wait and see.

User
Posted 17 Sep 2018 at 20:00
Sorry to read that hitsme :(

Started cycle 6 today. PSA is down to 0.44, the lowest its ever been, even following my chemo. Bloods are all OK too and blood sugar is still fine. Only side-effect of note is occasional diarrhoea which is well known with these drugs.

User
Posted 17 Sep 2018 at 22:18
Nevyn really pleased to hear your good news.

A slight improvement in ALT but still no where near normal range so stay off pills for another week and back next Monday for more blood tests. They are still hopeful that he will be able to resume the pills but at a lower dose. No one seems to know what the protocol of the trial is for this situation so we wait and see.

User
Posted 19 Sep 2018 at 19:11
Fingers crossed for you
User
Posted 24 Sep 2018 at 19:35
Slightly better news today. AST now in range ALT improving but still out of range. Doctor we saw today thinks that it is worth staying off the drugs for another week or so and then to restart middle of next week. She will be emailing "The Professor" as it was he who had suggested coming off the trial drugs a couple of weeks ago. The Protocol says he could have stayed on the drugs but the doctors thought it was better to have a break and hopefully get rid of the toxicity. Any change in plan they will phone us otherwise back next Wednesday which should have been the start of cycle 6. Blood pressure much better and potassium levels OK both obviously from the drug.

User
Posted 04 Oct 2018 at 21:03
I really don't know what to make of yesterday's visit. ALT very sightly lower but still over twice the top of normal. The team meeting had thought to go back on drugs but at 75% because they were assuming the ALT would be back to normal. Doctor we saw said go back on drugs and come back next week for another blood test, At least blood pressure and potassium levels were OK as off Abbi. I can't see that ALT is likely to come down having gone back on the drugs before anything like normal range. Wait till next Thursday.
User
Posted 11 Oct 2018 at 19:31
ALT is now almost 6 times the top of normal so has to come off the drugs though I did manage to persuade the Doctor that he needed to come off the steroids slowly so we are halving this for a week and back next week for tests. We have been warned that he is likely to need to have blood tests weekly for a while. AST is double the top of normal having gone back down to normal last week. Hopefully things will calm down in a few weeks and then decisions can be made. PSA up to 4.0 last week. A small rise as not on Abbi for 3 weeks of that time. Scans in 2 weeks should hopefully show if there are any problems with the liver. Scans 6 weeks ago were clear so they should be able to compare.
User
Posted 18 Oct 2018 at 20:11
Totally devastated. Liver tests still going up although not on the drugs. They were so worried he was put on a drip this afternoon. Loads more blood tests for things like Hepatitis. Can anybody give any advice. I'm struggling.
User
Posted 27 Oct 2018 at 11:41
So sorry to read your update hiitsme, I can't imagine what you're going through.
User
Posted 27 Oct 2018 at 12:21
I'm now on cycle 7. PSA has risen ever so slightly to 0.53, hopefully it's just a blip. Bloods are 'OK', there are a couple of raised readings, but the Onco is happy so onwards and upwards. I had CT & Bone scans at the beginning of October which were all OK.

The ongoing problem is the diarrhoea... It's a known side-effect and seems to go in cycles of about a week. They've given me loperamide but I'm currently not straying too far from the cludgie.

Last couple of days I've had some pain in the pelvic region which is a bit worrying as I've been pretty much pain free since I started the trial. I had similar this time last year when my PSA was rising quickly...

User
Posted 27 Oct 2018 at 21:11
Nevyn there are a few positives. CT done on Wednesday shows no damage to liver. This was reported on in 2 hours - I had expected to have to wait the full 7 days. Shows what can be done when doctor says it's urgent. Tonight ALT was only increasing by 8% a day down from 16% a day so some progress. If this continues it should plateau which is the first sign the doctors are looking for.

Thanks for your concern and I do hope it continues well for you but without the problems. We have been told 1. sort out liver. 2. Look at how the cancer is doing scans and PSA 3. Sort out treatment. Priority is sorting out the liver.

User
Posted 29 Oct 2018 at 17:59
That's good news about the liver, fingers crossed for the ALT.

Yes, they can get results back quickly. I have blood tests first thing when I go to hospital for the start of each cycle, and they are usually ready, inc PSA, about 2 1/2 hours later when I see the doc. I was pain free today and the loperamide has done its job so feeling OK.

User
Posted 29 Oct 2018 at 21:49
ALT increased by 18% yesterday so now in 900's. They are so worried he's got to stay in hospital. Positive CT scan showed a nodal reduction. Also "no CT features to explain the deterioration in LFT's" which I am taking as positive. Bone scan stable. He is off all medication including blood pressure pills without a problem.
User
Posted 09 Nov 2018 at 14:27
My husband was signed off the trial today.
User
Posted 09 Nov 2018 at 15:59

Sorry to hear this. How are you both?

Ian

User
Posted 09 Nov 2018 at 16:05

So sorry to hear that. What is "Plan B"?

Best regards 

User
Posted 09 Nov 2018 at 17:16
My husband is fine in himself and has been all through this. Spent 6 nights in Marsden and then transferred to Chelsea & Westminster when ALT went over a thousand. It has now turned and is coming down so was allowed out last Sunday. No treatment just blood tests and checking he was OK. My understanding is that they could have used some very strong steroids but thankfully this wasn't necessary. Scans CT and MRI both showed liver was working normally.

The Marsden (Trials Unit) have now agreed to monitor his liver function until returned to normal but that was hard work and had to be lent on by Chelsea & Westminster. Then we will be referred back to doctor from before the trials. Obviously no treatment until liver function returns to normal. We will have the choice of seeing his Oncologist at the Marsden or our local hospital as she works in both but very few treatment options and even those have to wait for the liver to recover.

User
Posted 12 Nov 2018 at 23:01
So sorry to hear that.
User
Posted 12 Nov 2018 at 23:07
I started on cycle 8 today. Bloods are OK, but PSA has risen again to 0.61, I guess it wasn't just a blip...
User
Posted 12 Nov 2018 at 23:20
It could just be the cancer trying to fight the chemo - prostate cancer cells can give off PSA as they die
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Dec 2018 at 08:24

Started cycle 9 yesterday, bloods all OK again, but PSA is now up to 0.94. That's 3 consecutive rises, albeit small ones. I'd rather hoped the Abi would last longer than 6 months...

I have CT and bone scans either side of Ne'earday but my Onco isn't expecting to see anything show up yet, last scans in October both showed no change. I guess a decision will be made at my visit for the next cycle in January.

Trial protocol has changed slightly too, they now want us to record our own blood sugar after any 'large meal' and have given us monitors. Presumably there have been a few problems elsewhere. Mine has been OK so far, averaging 4.4 after fasting for the cycle-start blood tests.

Onwards and ...somewhere...

Edited by member 22 Dec 2018 at 10:35  | Reason: Updated PSA on receipt of clinic letter

User
Posted 08 Jan 2019 at 09:33
I am now OFF the trial :(

I had the CT scan on Monday 31st December and a bone scan on Thursday 3rd Jan. Late afternoon on the Friday they called me asking me to come in urgently for an MRI scan, they suspected a cord compression and wanted more detail. Had the MRI late that night and was kept in pending the report which didn't show up 'till Sunday morning. Result is there is some soft tissue swelling at the tumour site and it's pressing on a nerve.

Unfortunately this means my disease is progressing which puts me off the trial... For the record my PSA has jumped up to 2.6 from 0.94 last month, so something's definitely on the move.

Next step apparently is RT to knock the tumour back again (I had similar last Feb, it wasn't a full compression then either) and then chemo at some point (Cabazitaxel/Jevtana).

The really disappointing thing is I was tolerating the drugs very well...

User
Posted 08 Jan 2019 at 10:05
Sorry to read this Nevyn - as you know, a zap of RT can be very effective though.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2019 at 20:31
So very sorry to hear this. My husband also felt really disappointed as he had tolerated the drugs as so he thought but the liver said otherwise. He was very fortunate as he is now on Enzalutamide as the drugs were controlling the cancer but were toxic to the liver. Liver functions now back to normal but will find out PSA in a couple of weeks. Don't think he will have scans like on the trial. Really hope things work out for you.
User
Posted 10 Jan 2019 at 08:08
That's excellent news about the liver functions Hiitsme! Really pleased it sorted itself out once he was off the drugs, a worrying time for sure. Also good news about the Enzo, fingers crossed you're back on track with the PSA.

It's interesting about the Enzo though, I thought you couldn't have it if you'd already had Abi? (and vice versa?). Although thinking it through, it didn't actually fail for your husband, just caused other problems.

Yes, it's a shame about the regular scans, was good for peace of mind. I feel like I've been cast adrift, no drugs apart from steroids to reduce the swelling so I imagine my PSA will rise quickly. Pain is increasing quite rapidly, but at least I can take something stronger now I'm off the trial. I go back to see them in a fortnight, presumably to plan the RT. Just have to wait and see what happens after that...

User
Posted 10 Jan 2019 at 08:23
As the trial was paid for by the drug company NICE doesn't count it. The medics view is that Abi was working but with serious levels of toxicity so Enzo should work.

Hope they come up with a treatment for you.

User
Posted 10 Jan 2019 at 08:43
Ah yes, NICE... Well at least we saved them a little money :) Which is a good thing btw.

Thanks.

User
Posted 10 Jan 2019 at 19:39
My husband had letter today to say PSA was 3.1 on 19 Dec 2018 that is down from 11 on 28 Nov 2018 when Enzo was started. So quite a drop in 3 weeks. The lowest it had got to on Abi was 3.5. So we are both very happy with progress.
User
Posted 10 Jan 2019 at 20:21
That's excellent news!

Also one of my questions on my next visit ;)

User
Posted 22 Jan 2019 at 18:22
Final update: I'm still waiting for a referral back to my local hospital for the 'emergency' RT and possible further treatment, that's nearly 3 weeks now with no meds. Pain has greatly increased, God knows where my PSA is now...

The trial team asked me to keep the tablet so I could do the occasional 'lifestyle questionnaire' for them.

 
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