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

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User
Posted 12 Sep 2018 at 21:06
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 19:00
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 21:18
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 18:11
Fingers crossed for you
User
Posted 24 Sep 2018 at 18:35
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 20:03
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 18:31
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 19:11
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 10:41
So sorry to read your update hiitsme, I can't imagine what you're going through.
User
Posted 27 Oct 2018 at 11:21
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 20:11
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

Ido4

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

 
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