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Anyone taking Zytiga? ie, abiraterone


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I have now been on Zytiga + prednisone ( + or - apelutimide) for just on 2 years as part of a trial, following nearly 15 years of intermittent Lucrin following external beam radiation.  I am 68.  As for side effects, I suffered many more side effects from the Lucrin than I have from Zytiga, including cognitive impairment and gynocomastia. 

 

The only side effect I can really attribute to my current treatment is difficulty controlling weight gain.  Like you I am very active and watch what I eat, but the weight still seems to creep up.  I have put on just over 10kg in the 2 years.   I also have to take medication for blood pressure now that I never did before. I am not sure the tiredness is attributable to Zytiga, but maybe, and it is not a real problem. 

 

If I sit around I fall asleep, but if I force myself to get active the tiredness goes away.  I have just come home from a 10km ride, and am going to work in the garden shortly.  I guess the big question is where the tumor(s) is ??  From my experience I would recommend you try to get on the trial, as you can drop out if you find the side effects too onerous, but while on a trial the medicos really look after you.  I know nothing of the trial drug they are testing, but Zytiga has been a life saver for me so far.

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Patrick Turner

Last Legs mentioned.....  Hi Patrick,

Very interested in your comments as they seem similar to the predicament I find myself in at the moment. I haven't begun Zytiga yet as I am still contemplating the side effects and weighing up the long term consequences. My oncologist is concerned about my rising PSA (up from 2.6 to 7 in 3 months).

 

That is something to worry about. 

 

I have been on standard care (Zolodex + Cosudex for 18 months) and my PSA fell very quickly from 2000 to 2.6 as soon as I started that treatment. Now the cancer seems to be building some resistance to this regime. 

 

Gee, from 2,000 to 2.6! But that's a typical response, but it doesn't mean the total mass of tumors has reduced, they have just been put to sleep for awhile, and they just don't like that so they begin to mutate a bit. Some doctors that they develop more receptor cells for testosterone, so that although most testo has been removed from you blood circulation, there is some from adrenal glands and if you google Bipolar Androgen Therapy, or BAT and the trial of this at John Hopkins Hospital being run by Dr Sam Denmeade, then you may get more insight about just how cunning cancer cells can. Cosudex is a blocking agent which stops testo receptors picking up testo, and when my Lucrin injects began to fail, I was put in Cosudex and it gave good reduction of Psa, but only for 6 months.

So I am now on the Zytiga, and so far, so good, but how long it works is anyone's guess, and then its chemo, and then I'd qualify for Lu177, but side effects can be horrid, no saliva, no tear ducts, so teeth tend to fail sooner. There are artificial products to spray into eyes and mouth but none are like the real fluids out healthy body makes and which have links to our immune system etc.

 

My oncologist has suggested a Phase 3 trial where I may be randomised into group with Ipatasertib+Zytiga+Prednisone OR I may be randomised into a group with Placebo+Zytiga+Prednisone.

 

I was told I was included in Ipataserbib trial but when I got to place of trial, they told be they had just got enough patients a week before, so I wasn't to be included, and I had no idea if that was true or not. I got the run-around. I didn't see anywhere online that Ipat was going to make much difference......

 

To be honest the combined side effects of these drugs, and their long term effects on my general health scare me more than the disease itself.

 

Join the club. But if you aged naturally, then bit by bit you lose functions, abilities and strengths. The older I get, the better I was. But so far, I don't seem to be much worse than what I would have been now if I hadn't been castrated chemically for 7 years and radiated twice.

Completely losing all sexual ability is no big deal because even if I was still hot to go, with whom could I share it with? I'm 120% hetero, and 95% of all the women in the world pause from men at about 50, ( they have a menopause ), and Nature commands this to give the world grandmothers who concentrate on the welfare of children without having to deal with surly old blokes coming at them with a hard on. You are given sexual ability by Nature to breed, and when that's done, Nature turns off the switch for women, so men cannot ever continue to bother women. Well, some do. Its all so complicated. Having women breed when they are 60 is no good for the human race. Men often like to think women to be source of erotic expressions of pleasure, where after breeding in done, its good fun for 40 years.

 

Well, Time ravishes everyone, and only very few M and F can enjoy sex at all at 60. Ppl say I am wrong, Bettina Arndt would disagree, but what would she know? she's tailored her opinions to sell books on sex, and AFIAIC, she's a great bullshit artiste. So once we all get over 50, we need to concentrate on love, not sex, and maybe we'd have a better world if more than a few could actually do it. 

 

Last Sunday, I rode in a Pedal Power Sunday group of 14ppl, 4 women included. Ride was 66km on country tarred roads. I was second oldest at 70, but one guy is 75.

But most were younger than me, maybe two ladies were 30. One lady looks 55, and I hope she doesn't read this because she might slap my face next time I see her. But up the last hard horrid hill she was slightly faster than me, as were 3 other men under 60.

I averaged 24.3kph, down from about 28kph I used to do at 61, when I was nearly as hot on a bike as I was at 40, when I raced in B grade Vets at a club. I have no freakish genes that ever meant I'd be a winner; I have plodder genes, but right now I am in fine condition and so better than 95% of all other ppl my age. I am going SO WELL as a castrated bloke riddled with cancer. 

But this could all flop if I fall off the bike, or one of the tumors in my bones grows to pressure a nerve, or make a bone crumble. 

 

My history has been one of avoiding intervention as long as possible. I was diagnosed in 2004 with a Gleason score of 8, but I chose Watchful Waiting, which worked wonderfully well for nearly 12 years (with hindsight I probably should have intervened about a year earlier than I did, I easily hold the record at my support group for the highest PSA at intervention).

 

IMHO, watchful waiting is another way of justifying procrastination and taking the Egypt Solution, ie, standing in de Nile. I was just waiting for my turn to get cancer because a sister perished with Oa, other sister had Bca ( but still lives, minus both breasts ).Dad died at 60 from melanoma, and friends and neighbours went down so often around me I began to think it quite normal to get something. At Psa 5.0, I qualified to get examined, and by then it was Gleason 9+9 and BAD news, I should have been examined 5 years earlier when Gleason 5 might have been found, and treatment could have been much effective, and the expense to taxpayers for my times at public hospitals much less. Medicare funds the cost of $43,200 per annum for Zytiga, plus $5,000 for Lucrin injects, plus the specialists and doctors.

 

WE ALL should be able to get a biopsy at Psa 3.0. AND we all should be able to have the PG removed before any Pca is found so that the RP is more likely to be done with full nerve sparing and retention of testosterone so that we can remain healthy men longer which I believe would save the silly expenses of chasing the horse after its bolted. But docs tell me there's not one man willing to have a pre-emptive RP as prevention therapy. How stupid are men? Angelina Jolie knew she'd have trouble later because of Bc DNA markers indicating she'd get Bca. There's a large worried army of fine gals out there, and many would do well to say farewell to boobs sooner rather than later. ( Angelina was said to be very pleased with reconstruction efforts which gave her better than the old originals :-)

RPs where there is Pca can lead to Pca progress later; the surgery is really too close to the tumor site, and many blokes I know had to have all the radiation I had, and one I know found the Psa went down, but only for 6 months, so he had to accept ADT, at 57. One bloke I know had urologist remove bladder, PG and lower urethra, join both ureters a stoma at side of lower abdomen, and he's been wearing a bag like 40,000 other Australians for last 8 years and that's how he got rid of Pca. He was completely neutered in the process, but has testosterone. Last time I spoke with him he was doing well, his marriage has survived, they love each other, and life goes on. 

But if anything goes wrong in my pelvic region and I need surgery, it could get very risky because radiated tissues bleed for a long while before the cut tissues can join properly. There are hundreds of stories online typed by blokes feeling the need to tell their stories.  

 

Like you I enjoy cycling, and I also do light gym work and I swim. None of these activities have been impacted so far by the Zolodex + Bicalutamide. Nevertheless I am conscious of decreasing cognitive awareness, some minor depressive bouts and increasing tiredness. I am 70 now and some of this may be due to age, but I am increasingly worried about the new drugs indicated above. Always a gambler I am in half a mind to let the disease run its course. I am interested to know how you feel yourself about your quality of life vs the side effects of abiraterone and prednisone especially as you seem to be still very active.

 

I think I have as good a life as many men could have. I ain't poverty stricken, I have no debts, and have a house which is mine and I don't have a mob of descendants wanting me to die early to get my loot. I don't need to be loved. It would be nice if I was. I do regret not being a father, it stings when I think of it, but hey, what's so great about me? did the world ever NEED me to breed? I was always doubtful about breeding, and I never pleaded with any woman to make it happen; by 25 I could see the excess of ppl on this Planet all scrabbling with each other for less and less resources and the Farm was always going to be in a worse condition when ppl died than when they came to it.

 

If only humanity could practise the idea that quality of a future means you keep you dick out of fanny if there's reasons for doubts about the future. Us humans breed without control.

So, because I had no kids, maybe yours are finding it easier to bid at house auctions because my kids just ain't there to bid against yours.

I hear the i-generation, the one after the Y genies are just so appalled and negative about their future that they just linger at mummies house and are afraid to do anything. Who could blame them? This coming generation are much more reluctant members of the species "Homo Wrectus", that's the one that goes around wreckin the joint and calls it progress.

So my reasons for living and what may seem misconceptions about the world have always countered any tendency to totally lose control of how I felt. Pardon me for being so tactless. I was told so often I was. But hey, what was I supposed to do? put up with the females of 1970s who tried to copy Germaine Greer? 

But now LGBTQ may be allowed to marry each other. About time. And when this comes into law I reckon I will be able to marry my bicycle, and you may wonder why, and its because I can go for a damn ride any old time I damn well like. 

Life is too short to stay serious too long, so always look on the bright side and enjoy ppl around you as much as possible, and don't be worried if a doc gives you terrible news. Do what you can to be a CD ( Coffin Dodger ) ; it is a dead set MUST DO. And its all you can do to stay around for longer; we all WANT that more than anything, but Nature has other plans, She says no, not forever, and we might think Aunty Nature is a bitch, but at the time of our conception, arranging DNA for us was always going to be difficult, bearing in mind the choice our fathers and mothers made for each other, and its a myth that women can multitask and Aunty Nature is female, and are you going to argue with Her?

I'm also so fabulously lucky, and maybe you. I could be feeling a trifle pissed off after all my family died in a bomb blast somewhere in Syria, and now I have to live under a blue tarpaulin at a refugee camp, without anyone much caring, and its 40C in the shade..... 

And the bad guys are still in power....

Patrick Turner.

 

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  • 5 months later...
Patrick Turner

That's an interesting article. 

The costs being quoted are $10,000+ for a month's pills, I guess in USA, so USD. Cost to Govt here is Aud $4,300, but I pay $6.30 at chemist. If I was a God, I'd bless Australia. ( This is impossible afaiac because IMHO it is impossible for any God to exist, so there's nobody around for appropriate blessing procedures :-)  

My oncologist said to me that most of his patients on Zytiga have Psa decline to about 2.0, and then it lingers around that figure, and some patients he'd had have lasted 2 years like that before Psa began to rise, but I've just had 7 months and Psa is rising after getting to nadir of 2.0, just like the doc said. From what the article said, much of the drug is secreted, and they say much of what it could do is not done because it ends up down the toilet, so that's money down the toilet. But methinks its costs peanuts to make the drug, but because it is a cancer drug for desperate men, and covered by patents, the men with Pca get charged a huge price. It is Pay or Die.

Successfully marketing cancer drugs is like printing your own dough.

But the 4 pills I take daily give total 1,000mg of drug, so 1 gram, and I guess the dose has been worked out after trials so even with 75% flushed away, its more than enough to shut down some functions of adrenal glands etc to interfere with cancer growth.

Just how much abiraterone is needed by an average fellow with Pca to do the job? how much is needed if you manage to get enough to go where its needed? 1/10 of a gram? Does the digestion process change the chemical structure of abiraterone? just why can't a man take the pills with a meal?

The article typically does not mention any answers to my questions. Nobody has told me Nuffink. So I'll search online, or try to contact Zytiga support person mentioned on paper attached to each bottle I get. Some ppl eat enormous meals and drink at least a bottle of wine a night; maybe it ruins the drug absorption, so that say you must not take pills at least 2 hours after last meal, then wait an hour before next meal, and this is inconvenient but somehow I find I can find time each day to fit in 3 hours devoted to pills. In 7 months I have not missed a day. It I NOT a big inconvenience. I am not fond of taking such pills in morning when I have empty stomach, then waiting an hour to have a small bowl of porridge then cycling 80km, and then lunch etc and PC work and emails to ppl around world. I have to fit in the prednisone pill, so that's the morning one no matter what, then have the big cycle ride, ( 3 days a week ) and then take Zytiga 2 hours after lunch, 4pm, then dinner after 5:30, and 2nd prednisone pill at 9:30pm.

During non ride days I have pred pill early am, then Zytiga at maybe 10:30 and lunch after 12noon. eezee peezee. 

The article implies that if you absorbed more Zytiga by eating food with it, then its do more good, like more is better, but that isn't always the case with drugs and more may not effect pca any more no matter how many tonnes of abiraterone was funneled into and around the darn adrenal glands/s. I search later, see wot I find.

Patrick Turner. 

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