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Abiraterone and high liver function tests

User
Posted 24 Oct 2018 at 21:15

My husband has been on a trial and taking Abiraterone (and possible a trial drug). His liver function tests suddenly went high at month 4. To begin with about twice the top of normal and then increased. He is now off the drugs but ALT still increasing. Top of normal is 40 and his ALT today was 500 so over 12 times the top of normal. Last week they tested him for all the Hepatitis but all came back negative. Talked about admitting him but decided more blood tests Friday. Does anyone have experience of this and offer any advice. On instructions from hospital we did a very strict low fat diet last week but ALT almost doubled in 6 days so that didn't work. He did have a CT scan this morning and doctor requested urgent look at scan and liver looks normal. Can anyone help. Thanks.

User
Posted 27 Oct 2018 at 00:56
I don’t think the doctors know why some men get liver damage from Abiraterone - and although for most the ALT drops back to normal levels within a few weeks it isn’t always the case. I take it that the doctors dealing with his care plan are aware of the trial and can find out whether he has been on the trial drug or a placebo?

I hope they can stabilise him very soon - this is such a horrible situation and you must both be feeling very anxious.

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

User
Posted 31 Oct 2018 at 12:22

You have a huge amount to contend with. Having to wait around like that is ridiculous.

It’s good to have a rant and release some tension.

Thank goodness your GP seems switched on.

Ian

Ido4

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User
Posted 26 Oct 2018 at 22:39

Husband admitted today as ALT still increasing at an alarming rate.

User
Posted 27 Oct 2018 at 00:56
I don’t think the doctors know why some men get liver damage from Abiraterone - and although for most the ALT drops back to normal levels within a few weeks it isn’t always the case. I take it that the doctors dealing with his care plan are aware of the trial and can find out whether he has been on the trial drug or a placebo?

I hope they can stabilise him very soon - this is such a horrible situation and you must both be feeling very anxious.

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

User
Posted 27 Oct 2018 at 09:25
He is in the Marsden and the doctors treating my husband have been in telephone contact with the top of the trials team regarding his treatment several times over the last couple of months and twice this week resulting in him being admitted. I don't think we could ask for anyone with more knowledge of trials to be involved.As this seems to be not following the usual pattern they are in contact with a liver specialist from King's College. We wait and see how his ALT is over the next couple of days. If it would stop increasing (or even a slowing down of increase) then everyone would be relieved even though we have been warned it could take a long time to go back to normal.
User
Posted 30 Oct 2018 at 22:30
ALT now over 1000 so still increasing rapidly. Still in the Marsden but KIngs are not that concerned as the CT scan showed the liver was clear. Marsden feel that things could suddenly deteriorate so he can go out of hospital for a few hours at a time but they want to do checks every 4 hours and they want him there overnight. He is so well in himself but really high ALT. Daily blood tests.
User
Posted 31 Oct 2018 at 02:09
Not ideal when the two hospitals have different views. Don't forget to look after yourself in all this - if you crumble you will be no use to anyone.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Oct 2018 at 08:19
I have crumbled and the hospital know it. We were expecting him to come home Monday and then go over daily for blood tests. They had explained his need to be admitted over the weekend was as the usual ward he was in was not open at weekends. So Monday bloods done 7.30 and told should be back mid morning. Late morning saw doctor who refused to tell us results and said she would see us later. My husband asked to go out for a walk after lunch and doctor said he has to be back for 2pm when she would see us. Great. Got back 2pm by 4pm both of us were pacing up and down the corridor. Sister then phoned the doctor and said they would be over in 30 mins or she would phone again. Three doctors came over about 4.30 and said he needed to be in a place of safety so could not come home. Suggest a form of day release. I was furious - sorry but it does take something out of you when they keep changing their minds. Went over to collect him about 10am as agreed on Tuesday and just as we were walking out of the ward with permission we were stopped and told we could only go out for 30 mins and then come back and see doctors. This time only 2 doctors came over again an hour or more after time agreed. As his ALT was now over 1000 he could only go out for very short periods of time. Back for obs every 4 hours. I asked how many patients they (2 doctors) had personally come across with ALT over 1000. Both said none. He was due for Hormone Implant at GP yesterday which they were going to do in hospital but then said he should go to GP for it. That was the best thing. His GP has 3 patients at the moment with with ALT over 1000 for different reasons and could assure us that even ALT of 10000 could recover from in his experience. He looked at blood test results (which we had taken with us) and said he wasn't that worried as other thing were not high. He did say that things can change quickly and so care was needed and he had no experience of this drug related high ALT.

Sorry for this ramble but I needed to get it off my back.

See what today brings.

User
Posted 31 Oct 2018 at 12:22

You have a huge amount to contend with. Having to wait around like that is ridiculous.

It’s good to have a rant and release some tension.

Thank goodness your GP seems switched on.

Ian

Ido4

User
Posted 31 Oct 2018 at 23:19
Thanks Ian

ALT still rising also AST and now Bilirubin is 18 so just about Jaundice. My husband is still fine in himself and walking well when we can get out of the hospital. As Kings won't take him as they say he doesn't need treatment at this stage just monitoring they are now wanting to transfer him to Chelsea and Westminster who would expect to find a bed in about 72 hours. The doctor did tell us today that they have no liver expertise there.They had managed to speak to his named consultant who we haven't seen from before the trial started. He said they did have one person in the original trails who had similar liver problems to my husband who recovered without any medical intervention. Most others were minor.He was suddenly sent for an MRI of the liver this afternoon and as no-one has said anything I assume that was OK. He was allowed out this evening for a couple of hours as this afternoon was taken up with the MRI. I am feeling exhausted and the thought of 2 hours each way to Chelsea and Westminster doesn't appeal. I would have been happier if it was Kings because they are a known centre for Liver problems. Why not a local hospital? If the ALT starts to go down then he wouldn't need to go there so here's hoping.

User
Posted 01 Nov 2018 at 01:30
There were no cases of liver failure during the controlled trials but there have been cases since abiraterone went to wider availability. I can't find any information about the outcomes for those men.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Nov 2018 at 00:34
Roller coaster day. Good,in fact Brilliant News this morning ALT and most other markers going DOWN. ALT down 91 although it is still just over a thousand. Doctor said if this continued tomorrow he could go home for weekend and come back in daily for bloods. We were over the moon.

Late afternoon doctor wants to see us again. He is to be transferred to the Chelsea and Westminster straight away as a bed is available. We protested but told his ALT might go up again and then there would not be any help available.

From being on top of the world to complete devastation in a few hours. He is now in Chelsea and Westminster. And to cap everything trains out of Waterloo had major problems (often happens) and I had to go a much slower way home and got home about 11.30 and have to go back to the Marsden tomorrow to collect the car. Feel so down when for the first time I should be rejoicing that the results are going in the right direction.

User
Posted 02 Nov 2018 at 22:30
ALT has gone up again. See what tomorrow brings. This is just so hard.
User
Posted 05 Nov 2018 at 21:21
Good news he was sent home last night. ALT went down both Saturday and Sunday. It is still over a thousand but at least going in the right direction. Don't know if we are under Chelsea & Westminster or Marsden. C&W expected Marsden to take over and contact us this morning to go for blood tests. They have given us a blood test form for use at C&W on Tuesday if we haven't had any contact. They did say they would not bother to test again until Tuesday. It was great no blood tests today. Enjoying a day away from hospital.
User
Posted 05 Nov 2018 at 23:43
Being in his own bed - success!

Difficult to bring up topics such as this but have you had conversations with each other about the end stage - what he would like and where he would want to be? Some feel strongly that they would want to be at home while others much prefer the idea of being in a hospice or hospital. If you haven't had that kind of conversation, it might be less scary / emotional to do it now while he is on an up; in my experience, it is much harder to introduce the topic when someone is very ill and going downhill. The palliative care team might be able to facilitate starting that conversation, or at least have a chat with you about what support would be available in your area. I am worried for you that not being able to drive is going to put a massive strain on you if and when he deteriorates, particularly if the C&W end up being the hospital that lead on his care.

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

User
Posted 16 Nov 2018 at 22:47
Eventually Marsden agreed to do blood tests last Friday and ALT had reduced to 748 and did agree they had a duty of care and agreed another test this week. We went over today and ALT is now 333 so reducing at quite a good rate and hopefully in a few weeks back to normal. We are now being referred back to his original consultant. The trials department won't do anymore blood tests.

Both Kings and Chelsea & Westminster said he needed to be on normal foods without restriction.He needs Protein, carbohydrates and fats. Both hospitals also could see no reason for iv drip if drinking fluids. So it was just a question of waiting and no treatment. Yes it did take a long time and the doctors were far more concerned than either of us. My husband was feeling well through out this time.

Of course the PSA is rising 7.4 last week. Our understanding is no treatment until ALT within normal levels. We wait and see how long before he gets another appointment with his original consultant.

User
Posted 28 Nov 2018 at 22:19
ALT now 103 and he is to start Enzolutomide. We were very surprised as we had been told no drugs until liver had returned to normal. This was double checked so we collected the drug today. They will do a blood test and phone him with the results next week just to reassure us that ALT is really going to continue to come down.
User
Posted 02 Dec 2018 at 21:49
I had problems with Abi as well. It was my AST that went up. Initially it went as high as 314 with a normal range of 10-40. I went down to 3/4 dose and it stabilised before climbing again. Then went onto half dose but that also started to rise so I started taking some liver supplements and it’s now come down from 165 to 47 and has dropped at every recent blood test so I’m still on half dose and PSA isn’t registering. Hope hubbys has stabilised
User
Posted 02 Dec 2018 at 22:26
Thanks tonyc

AST went as high as 745 and last week was 70.Because of the very high levels of liver toxicity Abiiraterone was stopped and will not be restarted. As this was part of a trial he is fortunate that he has now been given Enzolutomide. Hopefully liver will return to normal.

User
Posted 24 Dec 2018 at 21:42
Last week ALT was in the normal range. So yes a roller coaster but no treatment needed just time about 3 months to return to normal. Hopefully posting this final message may help someone else in a similar position.
 
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