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

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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.

User

Posted 22 Jan 2019 at 21:13

So sorry to hear that you are still waiting for an appointment.My husband chose to stay under the Marsden as his consultant worked at the Marsden and also at out local hospital. He is so fortunate as not in pain most of the time. He has also had another letter for a CT scan which we weren't expecting so that is positive for him. Tomorrow is his hospital day with bloods and doctor and hopefully will be fine. Do hope you hear something soon and they sort out treatment for you soon.

User

Posted 22 Jan 2019 at 21:25

My Onco, who I've been with for 4 years and had my chemo privately, no longer works out of Northampton. Pity, he's a good bloke. The new guy is ex-Marsden apparently so I'm confident I'm in good hands.

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