Abiraterone acetate zytiga

Hi I've been on it for over 7 months as part of the Stampede Trial together with Zolodex implants.

Worst side effect was I think self inflicted. started taking the Abiraterone in the middle of the night when getting up for the proverbial pee. There having 2 or 3 hours before taking Prednisolone instead of the usual 1 hour. After 2 days I could hardly get out of bed with joint pains and its took a few weeks to get back to normal.

So advice is its usually ok but don't mess about with when you take them and the steroid.

Hi Donmarie,  yes I'm on this treatment.

I'm on Zytiga/Abiraterone with Prednisolone and I'm generally very happy and feeling like a million dollars when compared to November-December 2013.  I have no idea what the "very frightening" side effects might be but I have none that I can put down to this drug regime alone.  My case is a little different from your Dad's as I do not have a single tumour nor involved lymph nodes.  I was diagnosed in May last year with aggressive prostate cancer that had already escaped and was happily eating away at my pelvic bones.  So I was put straight on Bicalutamide and had all the symptoms now being talked about of tiredness and male breasts!  Bicalutamide was changed to injections of Triorelin every three months.  I felt even more tired but my chest gradually returned to normal.  In October the injections had obviously failed as my PSA had steadily risen and in November my pelvis fractured in two places where the 'rats' had been at it.

So my oncologist did two things: he gave me radiotherapy to the two malignant fracture sites and put me on this abiraterone, -after discussing my options with me.  The abiraterone has worked for me.  The PSA has come down nicely. The prednisolone, (a steroid) gives me great energy to do things by day.  The pains I had from October to February have gone and I hardly need to take anything now except some paracetamol, particularly to settle me for the night.  I suppose the fractures have healed and the bones strengthened by the calcium tablets I take every day and the zolandrolone infusion, (the oncology unit calls it 'bone glue') every four weeks.

I don't know how old your dad is and how much age makes a difference.  I'm a very lucky 81, diagnosed late yes, but I've had a full life, feeling well and active.  Now I'm back to something like my normal self, gardening and walking though not as much as I used to.  I'd say to your dad, "go for it".  It can work very well.  No one knows for how long, but I'm grateful for extra time to do things that would certainly not have been possible without my oncologist and his abiraterone.

Hi joewales, very interested in your reply!  What's all this about 'self inflicted' 2-3 hours before the prednisolone and all that?  My oncologist gave me the pills and I read the leaflets with them.  I take the abiraterone tabs (4) around 4am every night from choice. (!) Because I have an irregular meal programme it is not easy to leave two hours after and one before food or whatever so I have always taken them at night.

As the pred is supposed to give you energy, (it does!), I take one with breakfast and one with our late lunch from between 1500-1600hrs.  This is to avoid an energy/restless boost keeping me awake at nights.  I do have restless nights with aching legs and take some paracetamol for this but my last sleep of the early morning from 0500-0800 is usually the best, and this is after the abiraterone.  So what is due to what?

Every night is disturbed 4-6 times to PU but it was just the same on bicalutamide and on injections of triorelin, so I am on tamulosin as well under the amazing brand name of Petyme!!.  This works well by day but hardly at all by night.  Gain some, lose some.  Cheers,

Hi David80 I guess we are all different with these side effects. I was fine with the treatment for the first 5 or so months, not taking any other medication till I changed my times between taking Arb. and the Pred.

Onc. seemed this was the cause of the joint pain. Offered to increase the Pred. but I didnt really want that so just took some pain killers till it settled back down . Still taking 1x 400mg Ibubrofen at night but that's all.   Enter your message...

Hi there David, read the side effects on the paper information insert in your Prednisolone box. It was this that made me keep a daily diary of all events in my life. I wanted to be able to look back from 'now to day 1' I had my first Zoladex implant 18th October (from what I can work out). My Diary starts Day 1 Friday 25th October, this is when I started on the 4 Abiraterone in the morning & 1 Prednisolone at lunch time or even later.

I was on a 'leg bag' since July 16. and switched to using compact catheters November 7. I have my freedom back

December 12.  I was instructed to double my dose of Prednisolone, this to help reduce the high blood pressure caused by the Abiraterone (plus my age) I note I am very relaxed about life and at ease with the world Thursday December 19.

January 2 last of fortnightly visit to Oncologist. next visit two weeks time as the first of 6 weekly visits. A bit strange that one,  the next visit should have been the last. January 3, 2nd Zoladex implant.

In short, the diary is still ongoing, looking back i find it interesting reading, my moods, general health including blood pressure readings taken at my GP's (I send these to the hospital as and when). On the whole, I feel good, although I have a very heavy cold right now, the first since I don't know when.

All scans and tests taken have shown good results to the best of my knowledge. I have been on the STAMPEDE  Trial since day 1. I had an appointment at the QE hospital Birmingham for a planning CT scan March 17. My Radiotherapy starts April 14. I have since been invited to join the RAPPER research program. I have accepted by email, I sign the paperwork on 14th

If you have not already done so, take a look at http://prostatecanceruk.org/ there is some vey useful information there.

Wishing you all the best.

C.

Thanks Clive.

I have read about side effects of all my drugs.  Pred may thin the skin, cause weight gain, bloat the face and many more.  I'm lucky so far.  My weight and blood pressure are both low and stable.  I watch my diet, plenty of fruit and veg, and avoid as much sugar as I can.  I take 2x5mg pred, one 5mg with breakfast and one with lunch.  I would like to take less but I must ask my onc.  Also, my BP may be kept low by taking tamulosin as well, -read the side effects!  I haven't fainted so far.  I'm not in any trial although trials are going on at the Exeter centre.  Cheers to you and wishing you a happy summer.

Hi again David80. From your last post you have possibly explained why I have suffered more than you from mismanaging when I take the Pred. I'm only on 1 x 5mg. per day, taken 1 hour after 4 x 250mg.  Abiraterone. As per specified in the stampede trial notes.

I guess they are trying to keep the steroid intake as low as possible, and only increasing it if there are real problems with side effects.

Hi Joe, I find these replies very interesting and I'll try to explain why.

First, I'm not on the Stampede and it looks as though I may be lucky in that.  I was put on Abiraterone after both bicalutamide and triorelin (3month IM injections of which there are at least 3 kinds in circulation), failed. I'm still on the injections but my onc gave me the choice of Abi or chemo and I chose Abi. He put me on the pred 5mg twice a day and has not suggested reducing, although I would like to if possible.

My urologist suggested Stampede, right at the start of my diagnosis last year.  I was so taken-aback that I asked him how doctors could 'sell' entering a clinical trial because of the chance of being given placebo not the active drug under test.  His answer was 'the chance of getting a new drug that will work better and a bit of altruism.  I said no.

About two weeks later, after I had been referred to my oncologist who did not alter my treatment, I had a phone call from a female who called herself 'The Trials Nurse'.  She asked if I had thought about joining the Stampede trial.  I had no idea who she was, had not met her and had only visited the oncology unit once.  I was put off and felt I was being exploited at a time when I was most vulnerable.  (I could cope with it very well now as I am better, much more experienced, know the unit and think very highly of it).

So I've been lucky.  Many will disagree with my decision on the trial but I seem to have been offered effective treatment so far.  Why you were given a lower dose of prednisolone than me I have no idea. Also, why does the trial specify taking this dose one hour after the abi?  That would be no use to me as I take the 4abi at night to avoid my meals, as it says, and pred must be taken with or after food to avoid indigestion!

Thanks for your interest,

I’m just joining this group. I’ve been successfully treated with Zytiga and prednisone. PSA has gone from 909 in 5/17 to less than .02 today, 17/1/19. My problem is the side effects, loss of strength and stamina. I’m winded if I walk up two flights of stairs. I’m trying my best to exercise but it’s difficult with my fatigue. Is there anyone out there who has dealt with this?