Jump to content

Anyone taking Zytiga? ie, abiraterone


Recommended Posts

Patrick Turner

Hi all, I have now been taking Zytiga for about 6 weeks. It is 4 x 250mg daily pills, taken together, 1hr before a mean, or 2hrs after. The Zytiga is a stronger form of ADT after rise of Psa when Lucrin + Cosadex began to fail. Psa was 7.2 before starting Zytiga, but was 3.5 about 2 weeks ago so it is working to reduce Psa. Docs don't know how long it will continue to lower Psa. I also have to take 2 x 5mg pills of predisolone daily.

 

Zytiga book has 10 listed side effects, and 3 worst are chest pain, heart beat disorders, heart failure. 

I was taking Zytiga in empty stomach in morning with 1 x prednisolone, then waiting an hour before breakfast, then doing my days doings. The second pred was after dinner. But I began getting some serious heart rate irregularity with uneven beats, and maybe HR of 30. I had a strange gut feeling, and Zytiga booklet says it could be due to low potassium levels. I increased intake of spinach which has high potassium. And I saw my GP and had a full blood test. GP had to learn all about Zytiga abiraterone, it seemed he knew SFA, but he hasn't tried to contact me so there may be nothing in blood tests to worry about.

 

But I thought maybe timing is everything with these drugs, so I now have pred in morning early, with small bowl of porridge, and then do my day's doings, and then take Zytiga 2 hours after lunch, 1 vego sandwitch, then have second pred after dinner, and this seems to be work because the heart rate bothers have reduced to almost nothing. I found I suffered hypotension, ( not to be confused with hypertension ) on and off during last 7 years on ADT, but that got worse with Zytiga. 

Yesterday, I was on by bicycle at 7:30am, then cycled 104km before lunch, so total for week so far is 202km, with another 60km next sunday. I've been averaging 33km a day for 3 months now, about 80 minutes a day average at 23kph. But right now, 10.30am HR is a nice steady strong 44BPM which shows I am fit, and GP was very pleasantly surprised to find my blood pressure was so good for a 70yo. I won't ride today, too many other things I want to do. A week ago, HR at same time was nothing to be pleased about.

Anyway, it does seem that timing for pill intake matters and maybe Zytiga + pred taken together is not a good idea. 

 

My cancer is Puff The Magic Prostate Grenade, and despite all the doctors and the appropriate treatments, Puff is slowly exploding, and may kill me within 2 to 5 years, pending future effectiveness of Lu177, which I cannot have now, unless I was on Docataxel (chemo). Meanwhile, I see no reason to stop cycling until the cancer makes it impossible. 

Your thoughts? 

Try to keep well, and try to not go insane, but I know its difficult....

Patrick T.

 

 

Link to post
Share on other sites
pauldhodson

Thanks for the info Patrick. Zytiga may be in my future, so it's go to know how it's going. Boy a heart rate of 44, you put me to shame (a 50 year old!). Cheers Paul.

Link to post
Share on other sites

Hi Patrick

I am on Abiraterone (Zytiga) now for past 6 weeks, with Bicalutamide and then Enzalutamide (Xtandi) having failed over time. My latest PSA not good (48 from 15 over 6 weeks). We are hopeful this a flare due to current radiotherapy.

I take my abi very first thing and then wait the hour before eating. When I eat I take the prednisone and other drugs. I find this works best for me as I don't lead a particularly ordered life and if I do the abi first thing I know I won't forget :)

One to check with your doc tho, I am only on 1 x 5mg prednisone daily, might be worth asking you Onco about that, particularly as you had the bad symptoms after taking the 2nd pred..

Don't forget there are so many other options if and when abi doesn't work for you, I'm sure you have many more than 5 years in you!

Martin

 

Link to post
Share on other sites

Hi Patrick,

I have been on abiraterone for almost two years.  I take mine first thing in the morning and breakfast at least an hour later, sometimes longer, and have the first pred with / after breakfast.  I have the second pred with lunch, and the pharmacy bods tell me to take it no later than 2.00pm.  Like you lucrin  had ceased to work for me after 15 years of intermittent use, and I was lucky enough to get on a trial of abiraterone plus placebo or apelutimide, which has dropped my PSA to around 2, and both CT and bone scans are showing a reduction in tumor size, both lymph and bone lesions.  Apart from tiredness, I have not suffered any side effects really, certainly not the heart stuff you had.  

Best wished for your ongoing treatment

Kerry

Link to post
Share on other sites
alanbarlee

G'day Patrick,

Your apparent side effects with Zytiga and prednisone (added to Lucrin) are a bit unusual. 


I've been using Zytiga and a steroid for the past 4 1/2 years with great PSA control (nadir 0.1) and with minimal issues, apart from a short PSA flare at the beginning. Among a number of other items, I track serum potassium levels and blood pressure ( both of which can be affected, but neither of which have fluctuated from normal). 

Hot flashes are manageable, and were not increased with Zytiga.

Given your concern, I should mention that a couple of years ago I encountered atrial fibrillation (a siblings issue), when I had a pacemaker installed and started on a regular anti-arhythmic and an anti-coagulant.

My timing with meals, although broadly in line with the advice,  has been a bit cavalier, since I wanted to experiment with food increasing uptake and possible further dropping of the PSA to undetectable. Similarly, I've switched the steroid from prednisone to dexamethasone, which has some limited evidence that it may help Zytiga to work a bit better. Finally, I've always used Avodart (dutasteride), initially as to cut the small amount of -testosterone remaining after ADT from being reduced to DHT (a more potent PCa fuel) -  and as more recent (but limited) evidence suggests, , to further help the Zytiga in producing a more favourable metabolic mix in the serum. My oncologist has supported all these variations.

All these variations (and halving the steroid) - are currently the focus of ongoing clinical trials supported by Janssen. Long-term low-dose use of steroids may be as bad for muscle mass and bone density as is higher dose steroid use, so monitoring both those would be well worthwhile - and compensating with exercise, as you are clearly doing.

Best wishes,

Alan

  

Link to post
Share on other sites
Charles (Chuck) Maack

Dear Patrick,

I had a fortunate history of over five years effectiveness with the combination of Zytiga/abiraterone acetate, Lupron (your Lucrin), and the 5Alpha Reductase (5AR) inhibitor Avodart/dutasteride.  Zytiga can be looked at as a super medication lowering testosterone/androgen production by three different sources – testicular, adrenal glands, and that which cancer cells can produce within themselves. With early use of Zytiga my PSA dropped from 255ng/ml to 0.31ng/ml the first 23 months, then over the next approximate 27 months showed a very slow but steady elevation up to over 0.9ng/ml.  I added Metformin accompanied by Vitamin B12 that resulted in a PSA drop down to just over 0.8ng/ml but then again began that very slow but steady elevation to where I dropped the Metformin.  The PSA still continued a very slow rise back up to 0.941ng/ml at around five years since starting, so more recently stopped the Zytiga and changed to Xtandi/enzalutamide, a medication that acts as a super anti-androgen to block the multitude of androgen receptors on cancer cells from androgen/testosterone access.  That change appeared to work for only a few months slowing down the continued PSA rise but more recently my PSA jumped from 0.941ng/ml to 1.15ng/ml. I was going to return to Zytiga to determine if that might again be effective when I came upon a research paper that claimed that when Xtandi appears to be losing effective, its effectiveness may be blocked by certain factors that adding Metformin to enzalutamide/Xtandi can reverse this blocking factor and sensitize other factors that will enable continued effectiveness of Xtandi. 

Important in the use of Zytiga is to not give up should it appear, early on, to be losing effectiveness that had been occurring.  I found this the case for me shortly after beginning its use, but then learned that this can happen and the Zytiga intake should continue, and it did kick back in for me within a couple months.

The only primary necessity I am aware with Zytiga is as you are practicing: no food/meds two hours before ingesting the four pills, as well as then waiting an hour more before returning to food/meds.  The accompanying Prednisone at 5mg twice daily is what is recommended, but I found information that a single Dexamethasone 0.5mg pill once daily can work just as well as the twice daily Prednisone.  See:

 http://theoncologist.alphamedpress.org/content/20/5/e13.full

http://www.ncbi.nlm.nih.gov/pubmed/25314055

My long explanation of my experience with Zytiga has been meant to encourage your continued use and recognize possible brief sudden PSA changes that can once again change back to dropping in level, and the possible future consideration of adding Metformin accompanied by Vitamin B12 if deemed necessary.

Link to post
Share on other sites
Patrick Turner

Paul said, " Boy, a heart rate of 44......" 

Yes Paul, and after some extensive blood tests last week, my GP is very well pleased with my general health, and potassium levels were fine.

I've enjoyed reading all the other responses to my initial post on Zytiga, and you all have given me a little more hope that I may not die as soon as Puff The Magic has intended. 

 

A few more days have gone by and for me, so to avoid the heart irregularities and to suit my crazy habit of cycling at least 220km a week, I take 1 x 5ml pred with a small bowl of porridge, then ride 30km+ across town for a coffee. I like to read newspapers and its so civilised at the Little Istanbul café. I may ride a little more south before coming home north, and when I get back its time for sandwich + green tea the Siam Twist and another coffee. If I've already read the Canberra times, I'll read the Australian, to get a balanced view on history as it happens. Occasionally, I might converse with others but not often, but its enough, and I must say conversation has become more rare with ppl young and old burying their minds in their mobile phones which I have not yet seen any reason to own.

So I have to wait 2 hours after lunch, then take the Zytiga, some 6 hours after first pred pill. I wait another 2 hours and am working on re-writing a website blog of 60+MB and then its dinner, lots of greenery in salads, never any meats, but maybe small amount of eggs or fish, and very little carbs, and only low GI complex type. I've added slightly boiled mix of large mushrooms and spinach to get extra potassium if that's what I may need, even though doc said 'tassium level is fine. But I've had last 4 days with no heart symptoms, and I did 104km last Thursday.  Weather has warmed here enough to not need some carbs to stay warm in an unheated house in ACT where we get 100 frosts a year. By about 10pm, I'll have the second pred pill with a small apple or 3, and maybe a banana. There's about 1mg of amygdalin in apple seeds and I eat the whole apple except the stalk. 6 apples a day might keep 6 doctors away, or keep one doc away 6 times :-).

Maybe that's 6 teaspoons of sugar, but its in fibre, small amount at a time, so OK. I don't have any bread or sugar in the house, and it everyone was like me the whole food industry would go stony broke, would be a major national catastrophe, but all my needs are from a very small shelf area of any shop, and I refuse all processed foods, grog, and all the other crap. 

I am now the same weight as I was at 41 when I spent 6 years with a cycling club where I did maybe 30 races a year, and rode 250km a week plus do my building work to earn money, plus work on my house, and be my own cook, cleaner, & bottle washer. I shared my house for 30 years after a marriage went phut, and I must say my alternative to marriage mostly worked out, and I got to know many people who were mostly blessed with gettonability and a working sense of humorator.

 

I did have a 12 year time when I stopped cycling and building work with bad knees and weight went to 102Kg. Strange how it just crept up. I had an arthroscopy which put life back into legs in '05, and since 2006 I have cycled about 130,000km, and just maybe its helped me battle cancer and the loss of being a full man; Roger cannot pleasure me or any woman, and so I have farewelled all the expectations of a partner, and a technicolour strap on vibrator with flashing lights is not going to be my way of compensating for the mutilation that Pca treatment seems to do to about all men I have known with Pca. But then, what mature minded woman of 60 would not at least privately think, "thank Christ he doesn't want it any more?" 

 

I might marry my bicycle, because as the wise Astrayan sage said, "I can go for a ferkin ryde any old time I ferkin like".

When I raced 29 years ago, resting heart rate was about 47. During my "Fat era" resting heart rate was 65. When I went back to bike on '06 it went down to the 44 I measure now. One morning I went to a new doc to get a Lucrin inject and she thought I might die because it was 42, so she sent me for an ECG, and then nobody thought I might die. Praise be to Nature, for It gave me a good heart. But its capricious, and 2 years ago to this day I quit cycling when knees had too much pain and I got fibrillation with HR about 100, so I drove to a hospital and they gave me a shoot up with some drug, and some pills, and I came good in a few weeks. My mum who lived to 98 had irregular heart, and she was far more easily upset and anxious, usually because she cared about us all, but I never ever saw her raise a sweat with real exercise.

At 41 to 45, I quite enjoyed riding 300km from Canberra to Sydney, about 11 hours in saddle, but I'll never do that again, but if I did, I'd 

camp overnight in Mittagong, preferably in somewhere not flash, just cheap. There's a lot of rides I won't do again, and I don't need to.

There's a group ride on tomorrow, about 56km and I feel well enough now to not be left behind by the young whipper-snappers who think they are so smart to overtake some old bugger like me. I might get a total of 300km for the weak. Its not about gut busting your way to the top of some hill, then going arse over head down the other side, its about riding the root AROUND the hill, pausing on way up to take in the view, pronounce something philosophic with those with you, or with Nature if there's nobody; and then going down the downhill can be exhilarating without danger. Ah, there's always the risk of a dopey roo leaping from scrub or forks breaking, or heart attack, but so what, fear has never fully gripped me. 45 years ago, someone said to me on a building site, "youse are the man they can't root, shoot, or electrocute", and I felt quite honoured that he felt that way. I rode motorcycles about 200,000 miles, and Nature let me live! I am tempted to get another motorbike but I'd be a traitor to myself. And I don't want doctors sayin, "Gees, dying like that, after all we've done for the bastard."

Anyway, I do hope you all have a fine Sunday, may your troubles pause and winds blow kindly from behind....

Patrick Turner. 

Link to post
Share on other sites
Patrick Turner

Charles cheerfully said "With early use of Zytiga my PSA dropped from 255ng/ml to 0.31ng/ml the first 23 months,.."

There's a lot in your reply to take notice of, and when I next see My Dear Oncologist in another month I'll ask him about Dexamethosone,

and Alan supports what you said, adding the idea of dutasteride, and lessening or elimination predisolone.

 

How would I ever know how to irritate my exceedingly time poor oncologist with questions had I not asked a question here?

 

Last year, I had extensive email discussions with a Radiation-oncology Director at a leading private hospital about getting the "salvation radiation" to my PG which had had 70Gy in 2010, and some new IMRT to two upper lymph nodes. It turned out there was no proof what he proposed for me would work, and based his trial on what a US doctor had published in 2011 in AJCM magazine for medicos. I was forced to give him my uninformed consent, because both of us agreed "it all should work, OK", based on what little both of us knew. A PsMa scan 12 mths later indicated cancer in PG was lessening but had little effect in lymph nodes, and showed a whole lot more thoracial  mets plus bone mets, and truth be know, maybe hundreds of met sites exist but were too small to show up in the gee-whiz PsMa. If my brand of Pca in PG needed at least 101Grey to zap them, then how was 45Grey going to affect lymph node spread?

 

But during the discussions, he mentioned the folly of researching by Googling, because I would "only make myself feel confused and anxious... " and I replied, "Whenever I talk to a doctor it makes me feel confused and anxious". I was so cheeky, but I merely wanted indication of efficacy based on evidence, and this doc had no patient records and I was his first for this RT. My case was very uncommon, where I had a Gleason 9 that was not operable, and could only be treated with RT, and his method allowed MORE RT if the first lot wasn't effective, and it was just my bad luck to need so much RT. Now I am less confused and calm, and I remain forgiving for a doctor's shortcomings. Not one of us is perfect.  

That doc benefitted from my questions........

 

But it was a very nice mild spring day here and I cycled 87km with a bunch of 12 blokes mostly younger and one gal of 40, and one fellow of about 75 who struggled more than I did. I once rode with some of them about 6 years ago on the same hilly route, and they struggled to keep up with me. But today I was left behind on 4 steep hills, they were doing 12kph and I managed only 9kph, and its all OK because unlike them, I have ZERO testosterone, and the abiraterone and predisolone may be having limiting effects on speed, ie, power production, and then there is the probable effect of lymph node radiation affecting lungs. I still averaged 24.5kph so at 70 I ain't worried if others leave me behind. Besides, after double TKR last Feb, my knees are probably never going to be as good as they were 7 years ago. I'll try to change to another slightly slower group soon, but this week I cycled 317km, and although riddled with Pca , I feel fine, and am getting stronger.

Resting HR at 2 hours after ride was 54. I read once that if resting HR was say 70 at midnight after a hard morning ride, watch out, there's a 90% chance of heart attack within 5 years. I suspect a number of fellows at this forum may have a dodgy ticker, and I wish I had answers but diet and weight is the first thing that should be gracefully but firmly controlled, not always easy if surrounding ppl all have bad habits they won't change. 

Keep well, keep sane, and both are difficult,

Patrick Turner. 

 

Link to post
Share on other sites
pauldhodson

Thanks for your reply Patrick, you seem to really love life, keep it up!

Link to post
Share on other sites
Patrick Turner

Paul mentioned "....you seem to really love life, keep it up!" 

Nature has blessed us with a mixed bag of abilities, enabling so much, and I guess I do love life. But I've been forced to love doctors, and probably just as well I'm single because after being married to doctors, I can't keep it up :-/

 

I used to take 3 days at 30 to clip my Jungolian hedge with hand clippers. Its a mean merciless long beast that continues to terrorize my retirement, a reward for buying a house, and now I have a petrol powered hedge clipper and a chainsaw, my basic essential gardening tools, used with loathing and impatience. Ah, but when I had me knees done, my upper body had to shape up to get better mobility and during the process something became dodgy in a shoulder, so I am no faster at clipping hedge than at 30, and any more than 40 minutes a day has one arm go tingly and a bit numb. Its the sort of complex neuro muscular problem which thousands of ppl complain about to doctors who like simple things to fix, and any "elective surgery" may have an 18 month wait, and by then, the problem could get worse, change its character, it is expensive, and with doubtful outcome.

 

But I'll have the water in pool clean and warmed a bit after winter, and will swim again which make be best therapy for arms and shoulders. Swimming is good as adjunctive exercise to my cycling which takes about 12 hours a week. But to burn the same calories in water I'd be out there swimming back and forth for 48 hours, and I'd hate every boring minute of it, and I'd still look awkward in the water like a beginner. I see all these blokes just gliding along in big pools, almost no effort, gracious in the water, and there I am splashing about and half drowning. On the bike is where I belong.

For how much longer, I cannot know.....

But by weeks end I'll have my lawns and hedge done, and all will be well with my world, before summer starts.

Keep well,

Patrick Turner.

  • Like 1
Link to post
Share on other sites
Patrick Turner

Hi everyone,

While on the subject of effects of taking Zytiga, aka Ms Abby Terone, one has to wonder if the continuance of "normal" ADT with Zoladex, Eligard, Lucrin etc is needed. There is a trial starting soon in Germany to find out, and while this mornings 1,000mg dose of Abby circulates in my blood, I can't help asking other awkward questions. What happens to Abby? does it just circulate around and be allowed to go to bladder to be expelled, job done? or does it get broken down into other chemicals which may be "waste products"?

If a substantial amount of Abby ends up in urine, should I have it extracted to use again? Each month of pills cost govt $3,600, and it seems if 1/2 the Abby was urinated out, it'd be worth good money to extract an amount worth $1,800 from 100 Litres of urine per month. Its a wonder some black market person isn't dropping by with a big bottle to be filled each day, offering something and / or able to sell it back to me.

Is this just another distasteful conspiracy idea?

( But a scientist has tested Canberra's treated sewerage waste going into Molongolo river and was able to make the sensational claim that the National Capitol of Australia must be using more cocaine per head than all other jurisdictions. )

 

Some have asked if it would be better to use Abby right after it is found Psa is rising after RP or RT.

With normal ADT, most men see Psa plummet to low levels, and tumor is starved of most testosterone, but then the adrenal glands make this smaller amount of testo and methinks this is just enough to allow many Pca cells to live on, but in a kind of coma, and like anyone in a coma, the Pca cells age, and change, and now its believed Pca cells grow more receptors to capture a larger amount of testo molecules from the smaller amount of testo passing by in blood vessels. Believers in BAT think many Pca cells grown maybe 100 times more testo receptors after say 4 years on normal ADT, and when hit by a 400mg inject of testo they absorb what is a toxic amount of testo, and many cells die. BAT is now being officially trialled at John Hopkins Hospital Baltimore, and funded by US Army.  BTW, 400mg may be a standard dose of injected testosterone used by body builders, year after year, at two such shots a week, with many injecting more. 

 

Methinks that if RP or EBRT fails after initial treatment, then without normal ADT, Abby sure would work but perhaps the tumor cells would still mutate a way around Abby, and then become untreatable by anything, sooner than if normal ADT is used, with Abby trundled to the battlefield when ordinary ADT is "all worn out". I know what is cheaper over the longer term.  

 

Meanwhile, we may ask questions. So while Pca cells are in a coma, and balls have been totally turned off, I wonder if the adrenal gland begins making more testo to make up the shortage of testo, to keep Pca cells in a lesser depth of coma where they manage to grow a bit, or even spread a bit, and my history and PsMa scans tend to support this theory. Its maybe a silly question, but then someone asked if time varies, and most said no, and said its most constant, and then some bloke called Einstein disagreed, and posted a few reasons for the world to think otherwise about time, and also about Mass, proving again that the only certainty is uncertainty.

 

But anyway, while on Abby, 3 of 10 side effects relate to heart problems, with one being "Heart attack", and methinks it'd be enough to frighten a man if he already had a dodgy heart, and be honest, everyone over 60 has not got the heart they had at 25.

So why does Abby threaten our hearts? Abby acts to interfere with all testo production, in balls, and in adrenal gland, and in tumor itself, which when starved of testo can mutate to make its own testo.

So if Abby affects adrenal gland ; is there a change to adrenaline, or to other chemicals from adrenal gland which may regulate heart rates? The Zytiga booklet I got says nothing about any of this, just lists the 10 side effects, and we are left to just trust Big Pharma. 

 

Well, Big Pharma has a vested interest in getting us to all use as many and as much of their drugs for as long as possible and with as many other drugs as possible. Their profits are greatest when all these drugs never cure any man, so money flows for years and years.... 

Why is it that I must take 1,000mg, the standard Abby dose per day? I'm 82Kg, but what about a man of 60Kg? or of 160Kg?

If my adrenal gland has increased testo production, would I not need more than 1,000mg a day?

 

I survived the weekend, some hedge clipping yesterday and today, and a short 42km cycle, but with a slight bit of slow heart for 5 minutes while reading a newspaper, and I took in a few big deep breaths which seemed to fix it, and have me realise my heart was not going beserko while reading about yet another Polly Tichian who is saying something entirely ridiculous. 

Patrick Turner.

 

Link to post
Share on other sites
Charles (Chuck) Maack

Zytiga/abiraterone acetate role in Androgen Deprivation Therapy (ADT)

Abiraterone is used for prostate cancers that are resistant to medical or surgical castration. It works by preventing the action of an enzyme called cytochrome P17, which is also involved in the production of testosterone. This enzyme is found in the testicles, the adrenal glands and the tissues of the prostate tumour. By inhibiting the activity of this enzyme in all these places, the amount of testosterone in the body is decreased more than by medical or surgical castration. This helps to reduce the growth of the prostate cancer cells.

Zytiga is used in combination with a steroid medicine called prednisone or prednisolone. The steroid is given to reduce the chances of fluid retention, raised blood pressure or a drop in the level of potassium in your blood as a result of the Zytiga treatment.

http://www.netdoctor.co.uk/medicines/cancer/a8805/zytiga-abiraterone/

 

While not the only source, androgen is produced primarily in the testes and some is also produced by the adrenal glands, which are located above the kidneys. We know now that the tumor itself is also a source of androgen production.

Over time, most prostate cancers become resistant to treatment. Zytiga works by blocking the production of androgen in the testes, adrenal glands, AND prostate cancer tumors themselves.

https://prostatecancernewstoday.com/abiraterone-acetate/

 

I have personally been a strong advocate for the inclusion of a 5Alpha Reductase (5AR) inhibitor when moved to androgen deprivation therapy (ADT).  5AR enzymes convert testosterone to dihydrotestosterone, known to be as much as a five times more powerful stimulant to prostate cancer cell growth and proliferation.  Dutasteride/Avodart inhibits 5AR from producing this conversion.  See:

http://tinyurl.com/3dxq43u

Link to post
Share on other sites
pauldhodson

Thanks Charles, would you care to join me at my next Oncologist meeting? Regardless of what I show them (the Medical-Oncolgy/Urology team at my hospital) they do not believe adding a 5AR inhibitor (or Bicalutamide for that matter) will make any difference. They get quite defensive and take the "we're the experts - if we thought it was a good idea we'd have recommended it for you already" approach, which I find very frustrating and annoying (it's my life after all on the line, not theirs). I will keep trying. Thanks Paul.

Link to post
Share on other sites
Patrick Turner

Chuck mentioned "Zytiga works by blocking the production of androgen in the testes, adrenal glands, AND prostate cancer tumors themselves."

 

Thanks Chuck,  I've understood the blocking action of drugs such as Cosadex, and I know that Zytiga blocks the production of T or DHT, and my concern was that if this production is interfered with then what else is affected ? I wondered if the adrenaline glands produce chemicals which regulate heart rate, are these chemicals also affected and if they are, then I can understand why 3 out of the 10 listed side effects are related to heart beat irregularity with one bluntly stated side effect **heart attack** kinda casually mentioned.

A man could then take Zytiga but drop dead with heart failure, and on death certificate the cause of death is written "Cardiac arrest" and there's no mention of his Pca, and that he was taking Zytiga. I humbly suggest that the Zytiga booklet I got wasn't written too quickly, and would have been previewed by specialist lawyers in USA who were on the look out for anything that makers of Zytiga could be sued for, by relatives of the dead man.

 

I watched my mother take Viox for 4 years for her arthritis, and I have very similar genetics, and she suffered fibrillation on and off during her life, caused by emotional stress, she said. I had a young wife of 22 who also claimed the same thing after a bout of fibrillation. I've had two bouts of fibrillation, once when I stopped taking Viox after the Celebrex began to stop working, a week prior to having a double knee arthroscopy in 2005. Sure, there's always emotional stress, but guess what, Viox was reluctantly removed from market after regulators instructed them to stop sales because so many ppl died from heart attacks partners sued the company and cases went on for years. I don't recall what was found in the action of Viox which upset so many people's hearts. The next time I had a heart rate fibrillation was at beginning of 2016, and I'd quit cycling for a month or two because of bad knee pain and my heart had become used to spending 12 hours a week cycling and resting HR was 45, but as I became unfit, HR may change, and in my case, it went too fast, and after 4 hours at a hospital they had it begin to slow, and I've had no troubles since then except when I began Zytiga, but now its eased off after making sure I space the predisolone tablets well apart, and have Zytiga well after the first pred tab, so by intuition, I seem to have adjusted OK to effect of Zytiga on heart rate, which I do know is not as stable as for some, while knowing some will have a far less stable heart than mine, to the point where they are frightened to ever do any exercise.

 

But at least the possibility of a heart attack is mentioned in the booklet. Of course if you read possible side effects of long term ADT, heart trouble and weight gain, tiredness is all mentioned, but those effects in me have been less than in many men of 70 where they get tired, become overweight, and have a dodgy heart with full testosterone. My GP is very well pleased with me and said all my latest blood tests look fine, and that blood pressure was remarkably good, like a healthy 30yo. They like to see me visit them in lycra, but I know there's a very slight underlying weakness, and my heart doctor is aware of it. I also know that my cancer will push me off the bicycle one day, but meanwhile, my most valued experience in life is to know more about my illness which includes this forum where men really do talk to each other. It does not always happen. I tried to get the local Pca support group to get an online discussion group going, but they ignored me, and I lack the computer skills to set up a group.

I must get on bike to get lunch now; I welcome your input,

Patrick Turner.   

Link to post
Share on other sites
Charles (Chuck) Maack
13 hours ago, pauldhodson said:

Thanks Charles, would you care to join me at my next Oncologist meeting? Regardless of what I show them (the Medical-Oncolgy/Urology team at my hospital) they do not believe adding a 5AR inhibitor (or Bicalutamide for that matter) will make any difference. They get quite defensive and take the "we're the experts - if we thought it was a good idea we'd have recommended it for you already" approach, which I find very frustrating and annoying (it's my life after all on the line, not theirs). I will keep trying. Thanks Paul.

Hello, Paul, since I am unaware of your prostate cancer treatment history unable to address specifically what may or may not be considered as part of your current treatment, but what you might consider is printing out the paper I provided explaining just what goes on when testosterone hits 5AR and is converted to dihydrotestosterone - well known to be much stronger a stimulant to prostate cancer cell growth and proliferation - and the awareness that with the prescribing of a LHRH agonist or antagonist has no effect on that testosterone produced by the adrenal glands or produced within cancer cells/tumors themselves, why the prescribing of a 5AR inhibitor - with dutasteride/Avodart preferred - is important to consider, particularly if PSA elevation is not under control.  Drop that paper off and request that after they take the time to review it, to get back to you because you would like to know their reasoning to not prescribe a 5AR inhibitor.  I will say that your MedOnc/Uro are not alone in questioning the use of a 5AR inhibitor;  MedOncs/Uros who "specialize" specifically in the treatment of advanced or recurring prostate cancer DO include a 5AR inhibitor in their practices.  What bothers me, is how many MedOncs/Uros claim 5AR inhibitors are not needed when it appears they haven't even done their own personal research to recognize that importance, as I fairly comprehensively provide in my paper.

Link to post
Share on other sites
Patrick Turner

Hi Chuck,

As you would know, I am taking Zytiga, and it looks like Psa is going down, and I remain concerned about side effects of a possible heart attack which is listed in Zytiga booklet. 

OK, If I am taking Zytiga, should I also take dutasteride or finasteride? 

 

I've printed off that .pdf about 5AR and use of Avodart or Proscar.  These are drugs for reducing BPH, and they were never prescribed for me because my urination problems were minor despite having PG 3 times normal volume before being diagnosed with a Gleason 9.

But I take Tamsulosin to give a better flow following all the RT on PG, and if I miss a daily pill I notice reduced flow rate.

The Tamsulosin works differently to Avodart or Proscar, which you say have 5AR to reduce DHT. 

My oncologist has never prescribed a blood test for DHT, and that .pdf mentions that DHT is 10 times more stimulating to Pca growth, and now I wonder if I've missed the opportunity to get better tumor suppression, but then it may not be too late to improve future suppression by taking dutasteride. 

I see a good reason to discuss the dutasteride with my oncologist who I will be seeing in 4 week's time. 

And then I might see if I get the same negative response that Paul got with his doctor "we're the experts - if we thought it was a good idea we'd have recommended it for you already"   

Patrick Turner.

 

Link to post
Share on other sites
pauldhodson
14 hours ago, Charles (Chuck) Maack said:

Paul, more regarding the importance of the 5AR inhibitor: http://tinyurl.com/74bkzam   

 


 

Thanks Chuck, I appreciate your extra comments.

Link to post
Share on other sites
Charles (Chuck) Maack

Hello again, Patrick.  Pleased to learn that your PSA appears to be responding to abiraterone acetate/Zytiga.  Rather than immediately considering a 5AR inhibitor, first ask your treating physician to do a blood draw to check both your testosterone (T) level AND your dihydrotestosterone (DHT) level.  Zytiga effectiveness, in addition to bringing down PSA, occurs because of both T and DHT levels dropping way down.  We would want T to be at least below 20ng/dl, and DHT under 10.  I include the 5AR inhibitor dutasteride/Avodart because as retired military, I can get a 45 day supply for a copay of only $49.00 U.S. Dollars. But in the event you or others reading this are unaware, once Avodart is established in your system - 

about 4 to 6 months - you can then change to taking the 0.5mg capsule every other, or even every third day and it will remain just as effective as daily because of its long half-life.  This can be a consideration in cost saving if you don’t have health insurance coverage for oral medications.

 

The half-life of Avodart is 5 weeks, and it can take another 4 to 6 months for the medication to be totally eliminated from the system once it is stopped.

 

See: http://www.drugs.com/pro/avodart.html and scroll down to “Pharmacokinetics”

Link to post
Share on other sites
Charles (Chuck) Maack

For both Patrick and Paul, I have a group email address I use to send occasional emails to those prostate cancer patients or caregivers in Australia for those whom I have email addresses.  If you don't mind, would you please email me at maack1@cox.net with your email addresses to that I made add you to my group listing?

Link to post
Share on other sites
Charles (Chuck) Maack

Hello again, Paul. I have yet to receive your email.  Might try again.  maack1@cox.net 

Link to post
Share on other sites
pauldhodson

Hi Chuck, I just re-sent. it is pauldhodson1 at g-mail dotcom. Cheers Paul.

Link to post
Share on other sites
Charles (Chuck) Maack

Sent you an email to pauldhodson1@gmail.com so will be looking for reply.  Still have not received an email from you if addressed to maack1@cox.net 

Link to post
Share on other sites

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). 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. 

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.

 

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.

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).

 

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.

Link to post
Share on other sites
×
×
  • Create New...