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Abiraterone and SBRT on bone metastases - Experiences? - Abiraterone (Abi),CORE Study,SBRT

User
Posted 13 Feb 2018 at 11:07

Hello all (- This is my first post anywhere, ever, so please excuse any gaffes !)


Has anyone experience of Abiraterone plus Prednisone side effects, treating advanced metastatic prostate cancer, please? Or those of Stereotactic Body Radiotherapy (SBRT) on bone metastases ? (- see later)



I have just been offered the Abiraterone treatment, as my Prostap treatment is failing to work after 3 years - PSA is now rising steadily from virtually zero , currently 4.



I currently feel well and pretty normal (I'm in my early 70's), and I am still able to be active, so I'm reluctant to sacrfice this to treatment side-effects if the only gain might be a couple of months more survival. ( - Although my Oncologist reckons he has at least one patient still going strong on this regime after 5 years)



I was diagnosed ( no pre-symptoms) 3 years ago, and then staged G6+9 T3 N1 M0. I was given a course of Radiotherapy combined with the Prostap, ( surgery was not offered as the cancer had broken the Prostate capsule, and there were indications in the pre-sacral nodes). I've been fine apart from the usual Prostate effects (flushes, no libido, weight gain, less energy).



Ongoing scans suggest mets in or near the spine or ribs, along with the rising PSA.


I have also been offered access to one of two Trials as well as the "Standard" treatment above - one with Ipatersertib + Abiraterone + Prednisone, and one which involves intensive stereotactic radiation (SBRT) of the mets ("CORE" Study), again along with the Abiraterone +Prednisone .



Anyone with experience of any of these treatments, please?
Any information or encouragement much appreciated !

User
Posted 13 Feb 2018 at 13:32
Hi, I have been on abiraterone and prednisone for 2 years now, my spread is to lymphs not bones.
I can honestly say that I have had little side effect of the drugs, I am probably more tired but can't say that's definitely the drugs, could be a range of things?
My PSA had increased from 0.2 to 4 when I started the above combination, it's now 0.09, the lowest ever. Without trying to start a food argument I have also become what I term as a fish eating lazy vegan, I also have acupuncture and Chinese herbs, again, who knows if any of that has helped, it does if nothing else make me think I am trying to do something and I feel good on it all so what's the harm ( for me anyway).
I know I am a bit younger than you at 52 but have completed many tough ultramarathons , 10 days ago a 66 mile race and in 18 days a non stop 380 mile race across the Arctic pulling a sledge, I have been training 10 hours a day of late.
I have a website www.makethemostof.it there is no commercial interest in this it's just me and my viewpoint ( there is occasional poetic licence for those uber analytical on this site) and I hope if you have the time to look you will see what can still be fine with some belief, effort , medication and luck ( I know some men have bad symptoms/ energy from day one, I was lucky not to have that).
Never give up, go with the treatment and believe you can rather than worry you may not be able to.
Take care Kev

Edited by member 13 Feb 2018 at 13:36  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 11 Aug 2018 at 17:23

I know exactly what you mean! Next blood test is Wednesday for me due to the liver function problems being caused by the Abi but they do PSA as well and I’m already getting agitated. It’s a bit like having the sword of Damocles hanging over you!

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User
Posted 13 Feb 2018 at 13:06

Hello Tyke70plus and welcome tot he site.

It's very brave of you to start posting on websites at over 70. I know my husband (77) couldn't do it, he wouldn't have a clue!

We do have men on here with the experience you need and hopefully somebody will be along to advice you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 13 Feb 2018 at 13:32
Hi, I have been on abiraterone and prednisone for 2 years now, my spread is to lymphs not bones.
I can honestly say that I have had little side effect of the drugs, I am probably more tired but can't say that's definitely the drugs, could be a range of things?
My PSA had increased from 0.2 to 4 when I started the above combination, it's now 0.09, the lowest ever. Without trying to start a food argument I have also become what I term as a fish eating lazy vegan, I also have acupuncture and Chinese herbs, again, who knows if any of that has helped, it does if nothing else make me think I am trying to do something and I feel good on it all so what's the harm ( for me anyway).
I know I am a bit younger than you at 52 but have completed many tough ultramarathons , 10 days ago a 66 mile race and in 18 days a non stop 380 mile race across the Arctic pulling a sledge, I have been training 10 hours a day of late.
I have a website www.makethemostof.it there is no commercial interest in this it's just me and my viewpoint ( there is occasional poetic licence for those uber analytical on this site) and I hope if you have the time to look you will see what can still be fine with some belief, effort , medication and luck ( I know some men have bad symptoms/ energy from day one, I was lucky not to have that).
Never give up, go with the treatment and believe you can rather than worry you may not be able to.
Take care Kev

Edited by member 13 Feb 2018 at 13:36  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 13 Feb 2018 at 13:57
Hi, I have been on prednisone and Abiraterone funded by BUPA as a first line defence instead of chemo. Unfortunately it’s caused my some liver function issues so I’ve been on and off it, apparently a small minority of us suffer with the liver issue. Ultimately it’s just another hormone therapy alongside the Prostap and has similar effects. I’ve suffered all the standard ones, loss of libido, ED, fatigue and hot flushes but don’t find the side effects a lot worse when I’m on the Abi. I had PSA of 129 now < 0.01 with Gleason 9 and wide spread through the bones. Diagnosed age 60 in May 2017. Like @irun I’m also a runner and I’ve just about managed to keep that going as it gives me a lift but I do find the side effects of the HT really challenging!
User
Posted 13 Feb 2018 at 17:16

I had three years plus on abi plus prednisolone before it started failing. No side effects in my case. The trials sound like a wonderful opportunity. I would grab one of them without delay but I can't advise on which.

AC

User
Posted 14 Feb 2018 at 09:27

Well, I suppose I shouldn't be amazed that this thing works, but I'm very grateful and encouraged! Great to know that lovely people are happy to share information and experiences, and so quickly!



I was rather dreading the prospect of the Abiraterone, given the various unpleasant side effect warnings, so its comforting to know that some people manage pretty well on it. Here's hoping I'm one of them!



Many thanks to Johsan, irun, tonyc and Auld Codger.



I'm now also on the lookout for any experiences with SBRT radiotherapy for bone metastases. ( - and anyone on the Ipatersertib Trial)
Thanks again , everyone.

User
Posted 08 Mar 2018 at 12:59

Well, here we go. Started Abiraterone/Prednisone on Monday. No noticeable effects yet after 3 days on it. Cautious Hooray .


Chemo nurses did blood checks and issued usual dire warnings about side effects. I have to go fortnightly for three months for checks - potassium levels, kidney function, blood pressure etc. Hopefully then only monthly, if all OK. I stay on Prostap monthly too.



I decided not to go on the Ipatersertib trial - I was (and am) dubious enough about dosing myself with Abiraterone and the steroid anyway - also there was more intrusive monitoring on the trial, and of course a 50% chance of just being on placebo anyway. The Stereotactic Radiotherapy study was withdrawn anyway, having been offered - I have too many bone mets.



I'll post occasionally with progress...

User
Posted 08 Mar 2018 at 15:46

Sorry for the delayed response. We don't have any posting members that have had SBRT and I don't think we have anyone on the Ipatersertib trial

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Apr 2018 at 21:08

I've just started on the Ipatasertib trial, IPATential150. It's very early days, not quite 2 weeks, but they're happy with me so far. I feel fine, or rather, no worse...

Previously I was on Triptorelin, but due to rising PSA which doubled 4 times from 0.8 to 8 during 2017, they added Bicalutamide. This worked initially, dropping my PSA to 5.6 six weeks later. It didn't last though as my PSA resumed its upwards march and reached 9.6 three months later. Throw in a suspected spinal cord compression (It wasn't thankfully) and it was obvious things were on the move.

I was asked to choose between Enzalutamide and Abiraterone for my next treatment and was going to choose Enzo as it seemed to have fewer side-effects than Abi and I didn't need to take steroids... That decision changed when I was offered the trial...

Have I done the right thing? Time will tell.

User
Posted 26 Apr 2018 at 13:20
Hi there !
I was diagnosed in2012 with PC which had already spread to my bones . PSA 24.5.I opted to go on the Stampede trial which was Abiraterine and prednisone plus the standard hormone injections.
I was warned that the side Effects would lead to an increase in weight and deterioration of my ability to concentrate .
This has happened but not to a great degree and until a year or so ago my PSA was steady at 0.02
Once I had become accustomed to taking the drugs I found the treatment was working well and did not damage my quality of life .
Unfortunately it does now seem to be failing as my PSA is 1.7 and rising sonwill be moving into the next stage of treatment whatever that is .
I certainly do not regret being on the trial
and the results are very positive .
Best of luck for the future !
Alastair
User
Posted 04 May 2018 at 10:35

Thanks to everyone for their replies!

For what its worth, here's my experience so far of the Abiraterone/Prednisolone regime. (I'm still on my monthly Prostap injection too).

I take two (rather large) Abiraterone tabs an hour before breakfast, then the steroid with breakfast, and finally another steroid with lunch. I've bought a cheap Fitbit-type fitness tracker watch, on which you can set several daily vibrate-only alarms - very useful as pill reminders, as its easy to forget when out of the home.

I've just started the third monthly "cycle" - the tabs are issued in monthly batches. I have been having a blood and BP check every 2 weeks to monitor my reaction to the meds - this should change to monthly or more if all is OK at the end of this cycle.

I was very apprehensive about taking this stuff, but I must say I haven't experienced any problems so far, and feel fine. I'll find out at the end of this third and last "trial" cycle if its working properly (ie PSA down), and any measured side effects - only one so far is a slight rise in blood sodium.
So having been alarmingly briefed on all the possible side effects at the start, I'm very relieved - so far !

Tyke70plus

User
Posted 06 Aug 2018 at 21:42

Accidentally got billed for my Abi. £9500 for 112 500mg tablets! £61k pa if on two x 500mg which is standard dose! Got to love the big Pharma’s!

User
Posted 09 Aug 2018 at 09:54

My Dad's Ht was changed yesterday to Abiraterone as his PSA went from 11 to 30 in 5 weeks. Given that he was 1250 when admitted to hospital last summer this is still not such a shock. We were told about possible side effects but also that they are rare. We are really hopeful about this treatment as radio and chemo are not an option. Are we being too optimistic though? I know he's scared.


 

User
Posted 09 Aug 2018 at 10:08

I’ve been on Abi for 12 months. The side effects are no worse than I have from the Prostap. A small % of Men can have liver function problems on the Abi, a bit like an allergic reaction. Un fortunately I’m one of them so I think I’ll becoming off it soon. Kev Webber (on here as Irun) has been on it a lot longer and he’s doing really well on it

User
Posted 10 Aug 2018 at 11:35

My husband has been on abi,steriods and he has the six monthly hormone injection - also tamulosin since diagnosis last August - he was diagnosed with  advanced metatastic prostate cancer - spread to bones and lymph nodes there has also appeared a lung lesion. His PSA has dropped to 0.01 (from over a 100) and all of the mets have shrunk apart from the lung lesion which has grown and now under referral. After a year he is now starting to feel more fatigued and obviously the hot flushes mostly after eating. Apart from that life goes on as normal - still working full time albeit it is a desk job and he can work from home which helps. He will be 65 this year.


 


 

User
Posted 11 Aug 2018 at 14:18
I was diagnosed in February with PC and mets in my spine . PSA at the time was only 32 .
Started Abiaterone and Prednisolnoe 5mg twice a day plus monthlys of Zolodex thanks to BUPA . Recently reduced the afternoon dose to 2.5mg .
Since diagnosis I`ve had an operation for a hernia repair , all well apart from the lack of willingness for the scar to heal . Now 3 months after the operation and the scar is still weeping . Surgeons not to concerned , but for me it is a bind , my feelings are maybe the dissolve-able stitches are the cause , as I am still having bits pulled out .As for the scary read about side effects I feel ok , do get the hot flushes , but not as many now the weather has cooled . I do in the afternoons feel tired more than before and can eat like a horse between 2 pm and 5 pm- but have learned to control my temptations by eating fruit . PSA has come down to 1.0 and all other levels are within the expected parameters . My concerns are the not knowing of how long this regime may keep the PC at bay - each blood test being read back to me by the receptionists at my Dr`s does my wife way say make me very introvert for the days before the results .My wife has also said the treatment has made me a little less caring about certain issues that before I would have show more emotion about . I`m working on that, my Dr has said its not me its the meds ! Apart from that life is a normal but always with one eye on the calendar waiting until the next blood test .
User
Posted 11 Aug 2018 at 17:23

I know exactly what you mean! Next blood test is Wednesday for me due to the liver function problems being caused by the Abi but they do PSA as well and I’m already getting agitated. It’s a bit like having the sword of Damocles hanging over you!

User
Posted 13 Aug 2018 at 10:48
Just been given the latest PSA results and after 5 months on Abi + Zolodex its down to 0.8 so really pleased . Presented with 32 in April 2018

So glad I chose this treatment , as i mentioned before the side effects have been no more than the hot flushes and a little fatigue .

Tonyc I hope all goes well with you LFT on Wed - having the blood test read back is probably for me the most emotional side effect !
 
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