Was just told by my uro-onc that Casodex is about to kill me by shutting down my liver, based on 3 liver enzyme readings (ALT=177; AST=144; ALK.PH.=482). If I stop taking it, PCa will kill me. Right now, PSA is undetectable. Casodex monotherapy has worked for 4 yrs, but now I have very little choice but to succumb to radiation and/or lupron hell. Would love to just substitute Xtandi but got no metastasis going on, so dr. won't Rx it. Seems wrong, that I can't get the perfect alternate Rx until my PCa gets worse. Already fighting MDS cancer, Afib, pre-diabetes, diverticulosis, osteoporosis, arthritis (ankles) and CHF... now will do battle with after effects from RT and lupron. Not sure it's worth going on. Maybe I should dig a hole, climb in and call it a day. 🤕
Between a rock and another rock... - Advanced Prostate...
Between a rock and another rock...
Without any medical history in your profile we don't know much about the cancer.
Side effects of ADT are actually side effects of having diminished testosterone... You're already on an ADT, Casodex, yet seem afraid of lupron... You likely will not notice a difference in side effects whatsoever once you make the switch.
Very odd, i had complete history there for a few years, now disappeared. Briefly?Had a few negative DREs, first PSA in 2014 = 12+. Ignored it because 10 other conditions diagnosed at same time, including bone marrow cancer, atrial fib, diverticulosis, diabetes, etc. and I went into PTSD shock. Took 3 years to figure out the maze of doctors, keep track of appts, meds, diet, etc.
2017 - Biopsy, mri/ultrasound guided, in bore, GL 4+3, PSA 17
2018 - Started treatment: finasteride, tamsulosin and bicalutamide. PSA dropped to undetectable and stayed there to this day, Aug 2022.
Had half a dozen drs telling me bical. "isn't treating the PCa" -- like hell it ain't, i reply. Bical does NOT lower testosterone. Supposedly it shuts down all ARs (androgen receptors) in the whole body but mostly in the prostate gland and the cancer cells. I don't buy it; sorry but I've had medical professionals lie right to my face too many times to take anything they say at face value. My average T is 350-450 and I'm fine with that. Lupron will lower my T level and depress the living crap outta me. I'm ultra sensitive to any invasion of my body and mind. Took me a month to get over that freakin biopsy! Still gives me the willies when I think about it.
Meanwhile, I wrote this to my uro-onc about a month ago, kind of a dick move on my part but i still stand by every word:
Bicalutamide has been a standard hormone mono-therapy used across the European continent. The beauty of its method (blocking testosterone receptors in PCa cells) is stunning. It's been 100% effective keeping my cancer in remission for 4+ yrs. My free testosterone is about 350. Stop the bicalutamide and it's party time for Big C! Keep the Testo flowing, bartender!
You told me Casodex' efficacy couldn't last more than 2 years. I've heard 5-15 years from a few men in the various online groups I attend. All the peer-reviewed studies I've read determined that if bicalutamide doesn't affect the liver within the first few weeks or months of treatment, it's good to go. My liver enzymes spike 3.5+ years later and immediately you blame the bicalutamide and want me to stop taking it. There are almost 25 different causes of elevated liver enzymes, while you haven't checked for lifestyle changes in diet or supplements, etc. No, I'm not letting prostate cancer kill me because you're worried about a POSSIBLE side effect of a very efficacious drug.
The argument that hormone tx only "chases" PCa but doesn't kill it may be valid. However, radiation and/or surgery present even heavier risks to a 75-yr old. RP doesn't always remove all the PCa; heard too many cases of recurrence requiring salvage radiation of prostate bed. Plus healing from surgery isn't easy for me. Younger men heal from prostate biopsy in a few days, a week max; it took me a month. Radiation horror stories abound: incontinence, chronic pain, surgery to remove necrotic burnt tissue, colorectal issues, colostomy bags and/or more cancer. Meanwhile, I'm fine right now. I'm 75 and don't care if I ever have sex with a woman again.
Would YOU risk the possibility of PCa cells bursting the prostate capsule, sending out ECEs and oligometastises to parts unknown when you had a shiny bicalutamide barrier still standing without a scratch on it? I just turned 75 last week; liver and its enzymes tend to be sketchy among senior citizens. I also have gallstones/sludge/sand swimming around my gallbladder. Three gastroenterologists told me I needed surgical removal or I'd die. That was about 40 years ago; still have my g-bladder, no aches or pains.
I need to be very certain that bicalutamide will permanently shut down my liver and kill me before I stop taking it. You have not provided me with any certainty of that eventuality.
Before you wrote this second post, I was about to reply to the original by asking how he knows it is the Casodex causing the elevated liver enzymes. As you say, it seems odd (if not impossible) that it would take four years to manifest.
But, if you truly have no mets, I would be less worried about PC killing you anytime soon than about whatever IS causing high ALT, AST and ALP. Since maybe that is not your uro/onc's specialty, perhaps also be consulting a doc who's open-minded about ALL possible causes, to narrow it down?
Exactly what I concluded! Have already been referred to gastroenterologist since no hepatologist here. Should bical be f/u my liver, there has to be some tx to prevent that or protect liver while maintaining bical therapy. Thank you Noah 😊
This may be worth trying… I hope this helps you
Thnx, I have used Double Wood huperzine-a for many happy years, to boost cognitive abilities beyond belief! I see the Tudca promotes the flow of bile from the liver... however, my gall bladder is stuffed to the top, with stones and sludge, so not sure more bile will be helpful. Another substance is Sulforaphane but again, not sure of its benefits in my situation. Thnx again, my friend. 😀
You're still with a urologist?
yes, of course. 👍
Medically speaking Casodex (bicalutamide ) is NOT an ADT. ADT is defines as a medication that deprives the body of testosterone. Casodex Does Not touch Testosterone production..in fact it raises testosterone somewhat.The way Lutamides (like Casodex, Enzalutamide etc) work is by blocking the effects of testosterone (And Not by stopping T production )
Thnx. Bical makes T unavailable for PCa to use so stays in ADT category.
Has your experience re Bical been in line with the SEexpectations for men who take Bical....there must be studies on Bical SEs? Studies comparing Bical to Lupron SEs???
You don't mention any detected meatastais....assume you have had latest scans? If none found in scans, was RT suggested after your initial diagnosis? If so, evidently you simply rejected that advice at that time and asked for Bical because of fewer proven SEs?
My first uro-onc, Dr. L, was big on RP, also gave me info for RT. When I asked about chemos, he Rxed bicalutamide (for which I am eternally grateful), with the standard speech about HT (hormone therapy) only "chasing" the PCa, not killing it. This was 2018. A month later, when my PSA dropped to undetectable, I decided what the hell, why do anything further for now? The cancer's sound asleep, giving me more time to research my options. After a few months, PSA staying <0.1 undetectable, I decided that I would not slice up nor roast my genital area until the PSA started to rise. 4 years later, it still hasn't happened.
No one I know is doing what I'm doing, although I've had many criticize me. One guy says I'm "making bad decisions" but he's a flying monkey for another guy, who told me I "was treating my PSA and not the cancer"... a statement I STILL can't figure out. 😜 Meanwhile, back at the ranch, latest uro-onc, Dr. K, is very popular among the 25 guys in my local support group. I like the guy and respect him but beginning to wonder why. He went through the list of 23 different reasons for elevated liver enzymes, 10 of which applied to me, disparaging all of them as if they were 100% irrelevant or inapplicable. When I told him I'm scheduled for an ultrasound scan, he compared that with the photograph of a car... you see the outside which may look fine, but internally, there's no battery or engine. Great analogy but I have the feeling a 3T mpMRI combined with other equipment, CT, etc, can produce a whole lot more information about what exactly is going on with my liver... before I succumb to any more horribly invasive procedures.
I just called to make appt with the GI specialist and missed office hours BY ONE MINUTE!!! and they wonder why people go postal! lol -- So my primary, a good GP family dr. agreed with me, that determining the bical was f/u my liver is a great idea but that I should stop taking it for the time being... because "your liver may not wait" ... insert bitter-sweet chuckle here.
So that's it from the front lines... Stay strong, fellow warrior.
so, that will be an excellent test...ie stopping it. Your treatment decision is an anecdote, and Docs go by what studies of many men have found....please understand that!! for every 1 man who makes your decision, there may 9 for which the decision results in failure, but you won't believe it, because that wasn't your experience. Studies don't show that all high risk men who refuse treatment die from PCain the next15 years...but the odds are very unfavorable compared to the men who accept treatment. Hopefully you understand the basis of scientific evidence???
There are men in this forum who have been on Lupron type drugs for quite a few years and who are able to tolerate...they are able to deal with SEs. Other men quit after 6 months.....SEs not bearable for them. Which group would you be in......who knows!! I'm sure there are ongoing studies looking at the question. As my friendly uro said.... " we have more questions than we have answers re PCa !!)
well aware of the importance of deep dives into peer-reviewed studies, abstracts, related articles, etc. About anecdotal evidence? My jury is still out on this "phenomenon" -- if an abstract details clinical trials where test subjects are only in the hundreds, with varying parameters, from age groups to God-only knows what, and the conclusions look negative... but about 20 guys say the results should show positive, by their own experience, oh sure, the percentage is 1% or less for the anecdotals.... but it's still 20 men! My bottom line is that no matter what decisions we make, and what the doctors know and don't know... it's all still a crapshoot. I've learned to trust my instincts and use my body as the best lab I have.So I wish you and all of us good luck in the PCa-sino !
It's a crapshoot in that probabilities are the end result of these type of treatment studies. Yes, need to be aware of underpowerd studies..though I have no claim to being an expert in detecting those...unfortunately. Peer-to-peer is supposed to come into play> Myself, I like meta-analysis of treatment results from multiple studies.....even when non-randomized studies...sometimes they are just not available or feasible. Some critics of non-randomized studies actually quote non-randomized studies in posts seen here?????
meta-analysis is an interesting subject. also not an expert, but i would imagine it has its limitations as a tool for seeing reality.
I think everything has limitations...if you dig deep enuf? Biggest problem is the huge number of variables that could be involved with medical studies and resultant conclusions. Still, better than wild speculation and witches brews!!
for sure... maybe. hahaha - the first hematologist I was treated by was probably one of the best on the East Coast. sent me for a battery of blood tests and the first endocrinologist sent me for about 20 more. I said off handedly "Man, the blood must be the most complex organ in the body" He laughed and said, "So the brain comes in second?"
no mention of zytiga.... i referred to Xtandi (enzalutamide) - recently FDA approved for metastatic castrate resistant cancer patients... which leaves me out. If i stop the casodex, i have no doubt the PCa horses will leave the barn and jump the fences... then what? well, at least i didn't die of liver failure, only prostate cancer??
Smurta just wrote what I was going to wright . If I were in your shoes, I would stop Casodex for 4 to 6 weeks and monitor PSA and Liver enzymes. If ALT, AST, Bilirubin fall back in normal range, I would RESTART casodex at half the dose. If this does not work your next best option should be Enzalutamide (at lower dose)
Whoa! Thank you x ten! Stopping all supplements TODAY! Hope I see the same results as you. Thnx one more time!
I was about to suggest magnesium citrate for your a-fib issues.
i tried mg citrate in pill form, thinking it wouldn't loosen stools that didn't need to be loosed... milk of magnesia is a very VERY old OTC preparation.i was wrong. i'm homeostatic, as far as the a-fib goes. no chest pains, steady heartbeat, even when exercising, which is scary but i'm cool with it.
thnx for the suggestion, tho. 😄
Dear JPOM,
I rarely post here, but I feel that there is a need to respond to what you wrote your oncologist.
Last summer, with the sponsorship of the European Association of Urology (EAU), we updates the ADT book for the European market. That forced me to review the use of Casodex in Europe as monotherapy to treat early stage systemic PCa .
Whereas it is true that Casodex monotherapy is used in Europe, it is not strictly true that it is still "a standard hormone mono-therapy used across the European continent." As you know it is not used in North America because of the high risk of the liver toxicity that you are experiencing. it is also true that most of Europe now avoids using it because of that toxicity,
Sorry that I can't be more encouraging.
Richard Wassersug
Thnx for the update. All I've seen are what others have... Liver toxicity is RARE ( 1-3 percent) and shows up during 1st few months or not at all. But that fear-based narrative is now being promoted like crazy, because, imho, bicalutamide is VERY CHEAP and UNPROFITABLE.
Again, I have only seen bical. rarely affecting the liver, and that SE shows up within a month or two of start of treatment. ONLY recently have other reports about "serious toxicity" been showing up. Otherwise, bicalutamide is WELL TOLERATED, at least has been for me for the last 4 years.
Dear JPOM,
When you say that "All I've seen are what others have [seen]", could we get the references? Are you talking about low dose or high dose (150 mg/ per day) Casodex?
The fact is that the hepatic toxicity is high enough that here Canada we only use Casodex short term to block the testosterone surge when patients start on LHRH agonists.
I know of no evidence that Pharma is discourage Casodex use in Canada because it is very cheap and unprofitable. What comes to mind though is DES, which is still used in much of the world for ADT. Yes, "is VERY CHEAP and UNPROFITABLE." But is also can cause deadly blood clots.
Note: I am not pushing the expensive drugs, but liver toxicity is deadly...regardless of the cost of the drugs. And that seems to be what have to deal with now along with a truly challenging list of serious comorbidities .
I am sorry that you have so many health challenges to deal with and can understand how you have lost faith in the healthcare industry. However, with clear signs of liver damage you do NOT want to be on high dose Casodex monotherapy.
Richard W.
I appreciate your concern, doctor. I'm on 50mg tabs; I believe the high dose has been discontinued in the US. Here are 2 refs but there are more:1) originalText -- under Side Effects, Uncommon
2)originalText -- under Warnings: Hepatitis ("rare cases" and "occurred within the first three to four months of treatment")
My uro-onc ignored the fact that I have gallstones ranging in size from sand to 25cent coin. He admitted liver ailments were not his specialty but didn't even suggest I find a hepatologist. Also ignored the fact that I have bone marrow cancer, which can affect the high ALP reading, since alkaline phosphatase is also manufactured in the bones.
I'm totally asymptomatic for liver and gallbladder dysfunction. 3 numbers on a piece of paper, that by themselves aren't definitive nor reliable indicators, provide a poor diagnosis at best.
As time has gone by, more cases of severe liver toxicity have emerged from prolonged use of casodex in monotherapy. That is why it is being less used in Europe now than, say, a decade ago.
You quote the pharmacy literature that toxicity "occurred within the first three to four months of treatment", but you did not include the word that came before that quote. It didn't say that toxicity when it occurred, only "occurred within the first three to four months of treatment". It says that it "generally occurred within the first three to four months of treatment." [My underlining.]
Although you may not feel that any liver damage you are experiencing now is due to Casodex, the fact is that you have signs of liver toxicity and should probably stop taking the Casodex (whether it is causal or not).
Note: you called me doctor" but I am not an MD, so this is simply my person opinion.
My mistake, thought I saw a PhD after your name somewhere.
Yes, I am a PhD type doctor, but not an MD type doctor.
Piled higher and Deeper, eh? hahaha - anyone with a PhD is a doctor to me. And yes, "generally" is there. And to be fair, my uro-onc did claim that although the liver has been handling 4 yrs of casodex, it IS in 75 yrs old and could be calling it quits, so to speak. Hopefully, all it needs is a good rest, maybe a liver cleanse once or twice a week, I dunno. Have dr. appt with primary tomorrow, he's fairly knowledgeable about internal medicine and is referring me to a gastroenterologist he trusts. No hepatologists out West here so gotta make do with what we got. Stay tuned, Doc.
😀
You mentioned prolonged use of Casodex. How long is "prolonged?"
Sorry dhccpa, JPOM (et al.) for this long reply.
There is no simply answer to how long is "prolonged" when taking medications with rare, but nevertheless documented, potentially lethal, side effects. If one is taking a medication with a known, potentially lethal, adverse effect—and blood tests indicate signs of drug toxicity—if may be time to stop taking the drug. Of course, that has to be weighed against what alternative treatments are out there.
JPOM has decided to avoid androgen suppressing drugs in favor of using an androgen receptor blocking agent in monotherapy for ADT. That seems to have worked to keep his PSA in control for four years. But the drug is known to have a risk of potentially lethal hepatotoxicity. And his liver enzyme profile suggests that he is experiencing some hepatotoxicity.
The liver has the major task of trying to protect the body from any toxins we digest, In that regard, many supplements that folks take have some level of toxicity to them. This toxicity can be exacerbated when taking drugs that have a known risk of toxicity. So one should probably be cautious about taking supplements, if one is on Casodex monotherapy. As far as a know, there are no studies though on the synergistic toxicity between most supplements that folks take and Casodex.
However liver toxicity serious. We have two kidneys, two lungs, but only one liver. When there are signs of hepatotoxicity, one might argue that arguing with their MDs about whether Casodex is the cause of the liver injury is not likely to be medically helpful. It would seem to me to be more effective to stop ingesting whatever one is taking that could carry an elevated risks of hepatotoxicity (i.e., be that Casodex, supplements, or both),
Of course, one then has to weight that against the alternatives for ADT. I agree that the side effects of the LHRH drugs can be severe. But my philosophy has been to concentrate on how to best manage those side effects (hence the ADT book and the ADT Educational program we have in Canada).
Personally I have been on a couple of ADT protocols almost continuously for over 20 years. My PSA is currently below the detectable limit, but climbs immediately when I stop ADT. I'm 76 years old.
I will be leaving this discussion, but if folks want to correspond with me about managing ADT side effects, they can message me individually.
JPOM, I sincerely hope you find a way to manage the many health challenges you are facing without having liver failure on the list.
Richard Wassersug, PhD
Vancouver, British Columbia
Hi Richard... hope you are well. It's great to see your input on a thread here!
I know you said you were leaving the discussion at this point, so no need to reply... my thoughts seemed to make most sense to me when put in the context of your replies, so that's where I'll put them (for all to consider).
Those thoughts are not that it is impossible for bicalutamide to cause liver toxicity four years in, but rather how likely is it, relative to the possibility that the elevation in enzymes is due to another cause?
So just as the OP should not rule out the possibility, his doc(s) should not rule out OTHER possibilities. From the patient's perspective, it would of course not be good if the assumption was wrong and his liver enzymes continued to rise after discontinuing what appears to be an effective drug. But I think you are right, it makes sense to at least temporarily stop taking the Casodex, since even if NOT causal it could be contributing.
My bigger point is, it appears all of the general medical literature on bicalutamide available to the layman (and probably to the medical professional?) continues to imply if not directly state that hepatoxicity is a rare and EARLY possibility. Like the OP, when I began bical monotherapy I saw nothing to indicate a LONG-term danger to my liver, even as I found some indication of OTHER long-term negative effects (to kidneys, etc.).
For example, the NIH Bookshelf warning on toxicity reads in part: "Bicalutamide therapy is associated with mild, asymptomatic and transient elevations in serum aminotransferase levels in approximately 6% of patients [with} rare case reports of clinically apparent liver injury due to bicalutamide...
The latency to onset is usually 2 to 3 months, but can be shorter with reexposure and occasionally arises 4 to 6 months after starting."
If more cases of severe liver toxicity have emerged from prolonged use of casodex in monotherapy, is there any reference to this showing up in the literature yet? Although it seems fewer and fewer threads on bicalutamide appear in this forum, this is an important consideration for men who might be lucky enough to get years of ongoing success from this (cheap!) drug.
Best regards,
Noah
You gave an educated erudite explanation to this manAre you a pharmacologist ?
Thanks for your contribution
Please do it more often 😊
Richard is a Canadian research scientist who has used estrogen to fight his prostate cancer, and has written a book on the impacts of ADT, contributes and speaks to PC support groups, and I believe is running the blog called "Life on ADT." He knows quite a bit! (On top of that, a true gentleman.)
"...blood tests indicate signs of drug toxicity..." and "And his liver enzyme profile suggests that he is experiencing some hepatotoxicity..." - NO, elevated liver enzymes indicate liver dysfunction. Cause has yet to be determined. Serious push to bad-mouth casodex much? You keep referring to toxicity... there is no proof of that. Are you deliberately twisting the evidence here?
For the record, I have a gallbladder that is loaded with stones, sand, sludge, who knows what-all. The elev. enzymes could be result of the bile duct backing up into the liver.
Until I'm thoroughly convinced the bicalutamide is the culprit here, I'm making NO move to another drug. I've stopped taking the bical. but not liking having to do so... at all. If this results in the PCa busting thru the gland capsule, giving me the grand title of King Metastatic, I dunno. More options for various drugs but not a good way to gain access. That whole scenario has seemed ridiculous to me from the gitgo, IMHO. Give me the ounce of prevention now!
anyway, thnx for your replies, doctor. well appreciated.
Looks like things are rough for you, it must be awful. Although I don’t know exactly how bad your liver is, I’d like to point out that your liver is the only organ in your body that is capable of regenerating itself! It’s a remarkable organ. I wouldn’t underestimate how important your liver is. It looks to me that you need to deal with the bigger fires first. Hopefully you’re still in a position to do that. Have you tried cleansing your liver? Again, I don’t know how bad it is, but I do know that coffee enemas will dump out the toxins. You may need to do a lot of them. This is why they’re used with the Gerson therapies - they prevent the toxic effects of tumor lysis. When tumors are killed they become incredibly toxic and so you need to get them out quick. Here you have toxins in your liver. An enema will dump them out.
If I was in your situation, I’d try to give your liver every possible chance and switch to something less toxic, try to detox if possible and reevaluate. My focus would initially be in supporting your liver function first, not your PCa.
Hope it helps. Fingers crossed for you.
Appreciate your concern and suggestions. My primary wasn't alarmed at the test results, muttered "Yeah, not good but I've seen worse." I find it odd that a hormone can be as toxic as these doctors are only NOW claiming bicalutamide to be. I started raving about it almost 4 yrs ago, with some folks here telling me to stop, because "there are much better alternatives now." Sure, enzalutamide (called "Super-Casodex") just got FDA approval BUT it's expensive as all hell and only Rxed for castrate resistant metastatic PCa. I could be wrong, but it seems bical. has only recently come under fire for liver toxicity... yet I've found very little and uncompelling evidence for that claim. I'm guessing tptb are out to rip it right off the market asap.
JPOM...You are very smart to ignore the falsehood which had been propagated against Casodex...the reason is simple..."they" had to defame Casodex to sell a more liver toxic and much more expensive med like Extandi. Your wise decision 4 years ago rewarded you with 4 years of good quality of life. Do Not give up on Casodex yet..until it is established that your liver enzyme elevation is in fact caused by Casodex. You can be scared into more toxic treatments if you do not trust your own mind and let fear take over.I was only on Casodex for over a year with great quality of life.
There are hundreds of other reasons for liver enzyme elevation ...show the list of all your meds and supplements to a liver specialist and let him figure it out.
Casodex is too valuable a drug to throw out impulsively due to fear mongering by sellers.
If Casodex kept you fine for 4 year then, why casodex can not keep you fine for another 4 years ? Just find the real reason for liver enzyme elevation first...then make a decision.
Onco Industry is a business and a very dirty one. ..its about unlimited profits over people's wellbeing...Ugly indeed !
Thanks, LA - that is exactly what I plan to do. Your validation is much appreciated, brother. 👍
I had been taking Casodex for for than 10 years without any problems. I totally agree with you that supplements may help to solve the problem of liver enzyme elevation.
I agree totally. I've been using Casodex intermittently for almost 8 years and have stable PSA with no progression. Keep using it. Scaring you is NONSENSE.
Thnx for the encouragement. How intermittent do you use casodex?
Every 3 months to maintain response to it. Scans show no progression for 8 years. PSA stable at around 3.4 .
In the UK at least, enzalutamide is used for de novo (castrate sensitive) metastatic PCa treatment alongside ADT - that's what I'm about to start on. I took bical for 4 weeks to prevent tumour flare from the first Prostap injection.
Have you completely cut out alcohol? I see no mention of alcohol intake.
You are a very strong man to deal with all those co-morbidities...remarkable!!! Definitely need a liver specialist to help straighten this out. Remember, remote medicine is now widely accepted...if you have the coverage and/or the $$, seek out the best, no matter the location. As strictly an amateur, dropping the Bical for a few weeks and retesting liver seems like a good option.....but maybe let the liver guy guide you on this???
There are lots of superior substitutes for casodex.
Your liver is important.
You are making bad decisions and you have a doc that is enabling them it would seem.
Replace the casodex with other forms of ADT and get a new doc.
The casodex has to go first and work from there. You seem to know this but with numbers like that, if it were me I’d have certainly stopped it sooner. There are good options besides enzalutamide.
You seem quite dead set against Lupron or similar. I agree it’s not ideal, but have you actually tried it? Testosterone is nice but it isn’t everything, and T suppression beats dying of metastatic disease.
I’ve been in recovery a long time, even longer than you. I don’t know about you, but I treated my body so badly before I stopped I knew I would not even want to get to 40 if I didn’t start taking better care of myself, alcohol or not. How much do you exercise and what kind? I do understand you are carrying several co morbidities.
"The casodex has to go first and work from there."
This statement does not really make sense without knowing the full list of meds and supplements being taken, or considering other possible organic causes (NAFLD, hepatitis, etc.). What should go first are the things MOST LIKELY, relative to the others, to be causing the elevation of enzymes. [The medical literature is not exactly filled with cases of liver failure arising from bical use at four years, but it IS filled with cases of other causes.]
You're probably right. We don't know what he's taking. Plus just a lot of health issues in general. I can't begin to know the possibilities without more information. Me I'd still probably drop the casodex in favor of something else, but he seems very firm in his refusal of any testosterone suppression, so the choices are somewhat limited.
I can see the desire to not switch from something that seems to be working so well. The thing is, even if he drops the Casodex, he shouldn't be so sure his PC will suddenly sprout wings and kill him in an instant. If the PSA rises rapidly, deal with it then... but maybe it will decide to take its slow, sweet time and not try to kill him until long after some other condition tries to.
Wouldn't it be great if we could get a better, more accurate clock on these tumors? If I'm 75 and this tumor is set to start causing pain at 95 and death at 98, maybe I'll worry about something else that's more worrisome!
Almost everything else is more worrisome. The unfortunate truth for many of us is the state of our health when we get here. Primary case in point is cardiovascular disease. Most men with pca should probably be more concerned about that than anything. It kills us in far greater numbers.
i take metoprolol for Afib... not a great solution but it's working for now. I've fired 3 cardiologists because they got real nasty when I refused eliquis, which devastated me both times i tried it (1st time, for 3 weeks, 2nd time for one week). I'll stick with 1/4 tab of regular aspirin, thank you. Valsartan and HCTz for high blood pressure. That's it for the pharmaceuticals
I've dealt with a-fib and I agree with your disdain for industrial strength blood thinners. I take a baby aspirin once a day. BTW 'toprol slowed my heart rate down too much and turned me into a zombie. Propafenone worked better for me. I ended up getting a-fib ablation surgery when those meds stopped working and now I am off those heart meds. Both my brother and sister had that surgery before me. A-fib runs in my family.
yes, ablation can be very effective... but for those with pre-diabetes or hyperglycemia of any kind, ablation isn't suggested... it can work but has a track record of recurring with sugary blood. ah well, can't win 'em all. I connect with a cardiologist online, Dr. John Day -- the man saved my life with ONE email!!
I discovered something else that aggravates a-fib -- sleep apnea! My heart surgeon made me undergo a sleep apnea test before the surgery. I'm relatively slim and fit and didn't fit the usual profile for sleep apnea but I have it and have been using a CPAP machine ever since. I had complained to my GP of fatigue any number of times but he never thought to test me for that. Surgeon said if you get the ablation surgery and don't treat the apnea it is likely to recur.
yes, you're right. i had apnea when i was enormous - took sleep test, at one point had a blood oxygen level so low, the dr looked at me and in all seriousness, said "I did't know humans could live at that level of O2!" It was 57%. Lost 50lbs, apnea went away, afib stayed. Probly a causal relationship but no one will commit to that. "associated with" is as far as drs. will go. >sigh<
The first heart medicine we tried was Atenolol. First I felt a nice warm glow in my chest. Then I felt like something has stolen my soul. When I told the cardiologist's assistant, she said, "You're not the first one to describe it that exact way!" wow... just wow.
Wow is right. Years ago my cardiologist wanted to put me on sotalol. I refused it. Someone I knew at work said it really messed with his mind.
yep. very annoying when doctors ignore the emotional component of all these treatments. Trauma renewed with every "procedure"... remember the word OPERATION? Hardly ever hear it these days. Why? Gotta free up those hospital beds, fellas. More patients, more $$ So many of my friends stayed in the hospital at least 5 days after tonsillectomies... now? Lucky if you stay overnight. "Modern medicine has found the sooner you go home, the sooner you will heal" - i think it's steaming horse patootie!
Thnx, London and congrats. I don't exercise as much as I should - i have free weights and a crunch machine, but it causes sciatica to flare. I do stretching, toe-touching, that's about it. Can't walk too far, arthritis of ankles, with no cartilage at all there. Should spend some $$ on orthopedic shoes (duh!) Anywho... seeya round the rooms, maybe on zoom?
I probably missed the mention, but what other medications are you taking? Did you start any new prescriptions that could be the cause of the spike in the liver results?
aha -- my very first instinct was ask "What changed in my life?" I came up with 2 things:1) i started taking a new supplement, Absorbable Calcium, 1200mg + vit D3, 25 mcg, in liquid gelcaps. Changed my life overnight! I'd already been on vit d3 so this wasn't a factor. All the arthritis aches and pains disappeared! Hadn't realized how I'd gotten used to it!
2) because i now had no pain, i stopped exercising... like zero-ville. Compensated for calorie burning by eating less.
As it turns out... this was a perfect storm to cause fatty liver disease (FLD)! Lo and behold, FLD is reversible real easy: exercise yer ass off, ya lazy goober! Within one week of restarting my exercise regimen, my ALT dropped 40 points... but the AST went up 20. So I'm hoping to get some answers from Dr. V, the new man on my team... expecting a lot from him, because he started out as MD, got interested in hepatology (liver, gallbladder, bile ducts and pancreas) and saw gastroenterology was his bag (no pun intended). After residency, a fellowship at Tulane in Gastroenterology and Hepatology - so yeah, expecting some excellent data and enlightenment.
I was on Casodex a little over 3 months before it started blowing up my liver enzymes. It did help but its an older drug. I've been on Orgovyx since Oct. 11, 2021 and it's been much smoother with fewer side effects. PSA has been undetectable and my levels are all in range.
thank you for this! i glanced at orgovyx when it first came out... still new, not sure FDA or my insurance approves but certainly will keep it as an option. thnx again...i'd forgotten to keep it in my research. you da bomb, baby! lol
Lupron isn't necessarily hell. Did you try it before? If not why are you making this assumption?
What about cutting current dose in half? less toxic to the liver and maybe, just maybe it's enough to keep the PCa at bay.
funny, that was what i suggested couple days ago to the dr... he was shaking his head before I finished the sentence! dunno why.
This isn't a zero sum gain. it ain't all or nothing. IMHO.
Totally agree. Had already cut out Tues and Friday doses. Since smurtaw's info about elimination half-life being 7 days, gonna stop it all for 2 weeks, see what happens.
Its worth it. Lupron not so bad. Just home from 2 hrs of Pickleball. On Lupron/Zytiga-pred for 23 months. Had SBRT/SABR - 5 days to prostate index lesion, 3 days to T5. Flew to NYC and MSKCC for 10 days. Inexpensive hotel. Walked 5 blocks in Jan to MSKCC no problems. No pain, no addtl side effects. Fatigue all known from ADT. NOT CRAZY. DONT FIGHT IT. LIVE TO FIGHT ANOTHER DAY. My PSA Down to .03Mike
Thank you for your post. You have stone a light on the problem l have, a high alkaline phosphatase level, in June 2022, 244U/L., normal is 40U/L to 129U/L. The doc here sent me for an ultrasound whereas l now believe it's because of bicalutamide taken since 2018. In July 2022, another alp test came in at 236U/L, a slight fall. I can only think it's because l changed cancer docs who decided that my PSA of 0.02 merited a 'holiday' as of July 2022 and l stopped the bica.
I cannot emphasise enough how this healthunlocked site has been a life saver for men with prostate cancer.
I'm not sure I would be confident that such a slight drop indicates that the bical was responsible, or that the problem is resolved. There are many possible reasons for both a high ALP and for that ALP to change slightly over a month, and so I would continue to monitor that.
In any case, since you were on ADT as well as bical, there was no good reason to stay on it, so just as well to discontinue!
Wow! Thank you all, for your caringness and intelligent inputs. Some have asked what other meds, supplements, etc I've been taking. I have a dr. appt right now, so will have to come back later. I've stopped the bical. for 2 days including today, will go two weeks and retest liver. enzymes. The ALP could be due to the bone marrow cancer, since ALP is produced by bones as well as the liver. Will be seeing liver guy asap, but have stopped ALL supplements for now, taking smurtaw's lead.
ok, gotta split, will be back in a flash with the stash. lol
Talk to your Doc. about Casodex 2.0, which is Apalutamide (Erleada). My MO chose it for me over Zytiga or Xtandi due to less side effects.
I've kept a running list of various systemic txs for 4 yrs. Not sure which ones are FDA approved, nor which are covered by which insurance companies but here they are, fwiw:
For advanced PCa w/Extra-Capsular Extensions
HORMONE THERAPY
Casodex (Bicalutamide)
Decapeptyl, Diphereline (Triptorelin)
Drogenil (Flutamide)
Dutasteride (Avodart)
Eligard (Leuprolide Acetate)
Erleada (Apalutamide)
Firmagon (Degarelix)
Lupron (Leuprolide)
Nilandron (Nilutamide)
Nubeqa (Darolutamide) lowers Test.
Prostap (Leuprorelin)
Suprefact (Buserelin)
Xtandi (Enzalutamide)
Zoladex (Goserelin)
Zytiga (Abiraterone) – Low-dose w/ food proves its worth in small Phase II trial... may allow patients to take lower doses, gain same clinical benefit as 1,000mg w/fasting
CHEMOTHERAPY
Doxorubicin (Adriamycin, Rubex)
Emcyt (Estramustine)
Etopophos /Toposar (Etoposide)
Jevtana (Cabazitaxel)
Novantrone (Mitoxantrone)
Paraplatin (Carboplatin)
Taxotere (Docetaxel)
Taxol (Paclitaxel)
OTHER THERAPY
Keytruda (Pembrolizumab)
Lynparza (Olaparib)
Metastron (Strontium-89)
Opdivo (Nivolumab)
Provenge (Sipuleucel-T)
Quadramet (Samarium SM 153 lexidronam)
Rubraca (Rucaparib)
Tecentriq (Atezolizumab)
Xgeva / Prolia (Denosumab)
Xofigo (Radium-223)
Yervoy (Ipilimumab)
Zometa (Zoledronic Acid)
Ok, as expected, primary doc looked over results of the 13 liver-related tests he'd ordered last week, found nothing to be concerned about, other than elevated ALT, AST and ALP. Will make appt with Dr. V (great CVs!), gastroenterologist/hepatologist and get more data on pesky liver. Dr. V's motto is Never Give Up! Mine is The Fun Never Ends. We oughta get along jes' fine and dandy! Thanks again for all the great input and encouragement! Gotta love HU !
Great list! Thanks!
found this elsewhere in HU - Gus is an ally from yrs ago, hope he won't mind my reposting. Brings out the absurdity of the Cancer Industrial Complex.
The FDA's Crazy Drug Approval Process Is Killing Guys With PCa
By gusgold 4 years ago
Xtandi a second line anti-androgen is approved for mCRPCa; if you’re not metastatic Medicare won't pay. Now the FDA has Apalutamide on Fast Track for non-metastatic CRPCa with Doc's hailing the unmet need for this drug. These idiots know full well Xtandi would have worked equally well for non-metastatic CRPCa. So let me get this straight: I am diagnosed with PCa... have a RP... RP fails with BioChemicalRecurrence... put on Lupron which causes Castrate Resistance which allows me to qualify for Apalutamide if there is no metastasis and Xtandi if there is metastasis. So the key is Lupron. I have to get my hands on Lupron fast so I can become Castrate Resistant.
Gus
In the list of possible contributors to liver toxicity this article lists alcohol as numero uno.
of course. no evidence of hepatitis. i don't drink. at all. but thnx. the liver enzymes indicate liver dysfunction--- NOT TOXICITY -- that word is being thrown around here and i think a distinction should be made. I could be wrong.... and will find out from the liver guy i finally got an appt with.... Sept 19. sheesh, small town America
So, I'm wondering. After a week on abiraterone, my bilirubin jumped to twice the upper limits of normal (2.5), but my ALT and AST were normal. Alkaline phosphatase was a little high, but had been, likely due to activity of my bone mets. Chemo has brought that down to normal. Would bilirubin be the only thing to go up if abiraterone was affecting the liver, or maybe it's the first thing to rise??? One week off abiraterone & bilirubin was down to 1.3.
Progress report: been off all supplements and only taking meds minus bicalutamide. Very hard on me, since supplements really were helping but I can feel my body changing. May have made a mistake stopping suppls. AND bical at same time.... dunno which protocol may affect liver enzymes.
Can you test yourself for hep C? Could you do a fibroscan?
If i were in your situation I would take Degarelix for some time until you see if your liver function tests improve. It is not a big drama to stop Degarelix injections.
really not a fan of introducing more pharma poison, especially injectables. I stopped all supplements (was taking about 20/day) and bicalutamide, will stay this way for 2 weeks. If liver enzymes come down, will restart the bicalutamide and retest enzymes 2 weeks later. If enzymes stay same or get worse, then neither the bical nor the supplements are f/u my liver and will look elsewhere for the cause. meanwhile, it's been a learning experience.
It would be nice if you could find some time to feel out your profile.
Done it twice... keeps disappearing. Have no idea why. The short version appears somewhere above.... sorry, my friend.
here ya go: Very odd, I had complete history there for a few years, now disappeared. Briefly? Had a few negative DREs, first PSA in 2014 = 12+. Ignored it because 10 other conditions diagnosed at same time, including MDS bone marrow cancer, atrial fib, diverticulosis, diabetes, etc. Went into PTSD shock. Took 3 years to figure out the maze of doctors, keep track of appts, meds, diet, etc.
2017 - Biopsy, mri/ultrasound guided, in bore, GL 4+3, PSA 17. Used herbal supplements, vitamins, etc. Brought PSA down to 14.6
2018 - Started treatment: finasteride, tamsulosin and bicalutamide. PSA dropped to undetectable and stayed there to this day, Aug 2022. My average T is stable at 350-450
My understanding is that some ADTs keeps production of T at minimum and other ADTs are Androgen Receptor Blockers, preventing PCa cells from using T.
I may have replied to your post earlier but not sure. Anyway, I stopped all suppls AND bicalut. last week, and will recheck liver enzymes next week. My MO/hematologist asked me to stop bicalut. for 1 week when he first saw elevated levels, so I'm guessing 2 weeks will either show lowered enzymes or no change at all. Trouble is, if enzymes lower, I won't know if stopping the bical. or the suppl. did the trick. I'll go back on the bicalut. for 2 weeks and check the enzymes again. I know 2 week intervals are kind of short but I believe that will still be sufficient to give me the indications I need.
yes, saw you post that last week. Means after 7 days, half the bical. is gone... then after another 7 days, half of what's left is gone... etc. which is why you suggested I go a month to get "clean" of most of it. But I can't see going a month with free T of 400+ for the PCa to feast on. I feel shaky enough going 2 weeks.
MO is more involved with monitoring my MDS bone marrow cancer chemo but occasionally comments on the PCa. He's amazed the bical. has kept PSA undetectable this long. Also noted the elevated liver enzymes are dangerously high. Dunno if medicare will pay for weekly CMPs but no harm in asking.
Just realized yesterday was 2 weeks off bical. Gotta get tested now! Yikes.
Chemotherapy can also lead to liver toxicity combined with bicalutamide.
One Asia man died from liver failure after 21 cycles of Docetaxel in Taiwan. I know that from the clinical trial report. His cycles where 4 weeks long and the dose was 70mg/m2.
The possibility of your results could be wrong pathology results, but it could be maybe only one off. I assume that you always reteste if something is out of range? It happens.
I'm a big believer in the body's ability to self-heal. Hence, keep "procedures", testing, treatments, etc as minimal as possible. But good point, about the chemo and bical combo stressing my liver. Milk thistle has been used for over a century to strengthen the liver, so I started taking that about 2 months ago. I guess the pharma poisons cancelled out any benefits that may have yielded. Primary doc will be back day after tomorrow, order the CMP and we shall see the results, if any, of stopping the bical and all other supplements.
Can you ask for the fibro scan?
google.com/search?q=fibrosc...
2 weeks ago, sent this to the uro-onc who is terrorizing me about liver failure:I have not had these tests taken:
Liver function test
CT scan
FibroScan® – A noninvasive ultrasound procedure that can identify changes in your liver.
Diagnostic imaging (MRI, CT, PET scans for detailed pics)
How can you be so sure the bicalutamide is f/u my liver when you haven't investigated anything else that could be the problem?
********
I showed him a list of 23 other conditions that are known to elevate liver enzymes and he dismissed them all, within 15 seconds. I trust my instincts far and above doctor diagnoses when those diags. don't have the "ring of truth"
You are intelligent. You can easily over smart doctors.
The fibro scan will just clarify how serious is your liver condition. My grandfather died from his liver.
Outsmarting doctors is kinda iffy. They may not sound like they know MUCH more than we do, but I'm very convinced they do. There are rare occasions when they can't see the forest for the trees, but it's hard to know when that is happening. A tip off is when you ask a question and either they reply honestly "I don't know, but I'll find out for you" or they distract you with a line of information that doesn't answer your question! Those guys really annoy me!
Not a great idea, taking someone else's meds. PCa concerns are on hold, with new diagnosis of liver cancer and cirrhosis, probably due to the more toxic chemo i've been taking for bone marrow cancer. As usual, no one can say how or why cancers develop... only educated guesses. I will die if my liver shuts down. Scheduled for MRI in Sept, 4 days after appt with hepatologist, which sucks, because he'd have a lot more info to work with, besides the ultrasound i did 2 weeks ago. That scan was bad enough to toss me into the ptsd crapper so bad i started making out my last will and testament.
if liver disease is caught early, before cirrhosis rots away most of the liver, yes, liver damage can be reversed. otherwise, yer cooked, RIP. I stopped the bical. early last month. Hemato-onc has stopped my chemo for MDS today. Meanwhile, nothing to replace either drug, have no game plan but MRI data. Feel like i'm floating away.
no, i don't have the equipment nor do i know how to use it. 😜 I take one step at a time, pal. Next up is MRI. Can't do everything all at once.
i was joking. you asked if i could do the scan. of course not, i'd have to go to a place that has the scanner, then get the scan read by a professional. listen, i'm 75 yrs old, been dealing with cancer for the last 5 yrs and you're talking to me like i was a 5-yr old. Please stop. ... or maybe you're a robot?
how are you doing now?
my oncologist/hematologist finally admitted I was right and he was wrong!! After ultrasound and MRI, i probably have advanced cirrhosis and liver cancer... and the bicalutamide had very little to do with either condition. I have a liver biopsy coming up Nov. 1st, to determine if the cancer is primary liver or metastases from elsewhere. My uro-onc was dead wrong also, so when i see him end of Nov., will see how he handles being wrong also! hahahahaa.
The combination of chemo i was taking for the MDS bone marrow cancer and the bicalut. plus a gall bladder filled up to the top with stones, sand, sludge, etc. I suspect did the job on my liver. I'll be extremely lucky if I find something to bring more of my liver back to health.
A veteran buddy of mine said his liver was failing, docs gave him 6 months prognosis. He added 8 oz of freshly juiced greens daily for a month (fennel, cilantro, cabbage, broccoli, Brussels sprouts, kale, dandelion leaves, beat and beat greens, parsley, spinach, chard, wheatgrass, alfalfa sprouts, other sprouts, celery, cucumbers, romaine lettuce, ginger, turmeric, lemon, sweeten or dilute with fresh carrot or granny apple), and presto change-o, 100% healed liver! That was 2 years ago, he now has prostate cancer and some crap going on with his heart but you'd never know it.
My onco says to forget about the PCa and MDS for the time being and concentrate on the liver issues. My last PSA was still undetectable, after staying off the bical. for 6 weeks and off the MDS chemo (which keeps my hemoglobin level tolerable,10+) for 6 weeks also. I'm still above ground and vertical... must have a few angels watching over me, i guess.
bicalutamide fails after some time and start fueling your cancer.
it was a good idea to stop bicalutamide and pull the rug under the cancer.
i also had a laparoscopic cholecystectomy about 20 years ago by professor Ross Smith in the Royal north shore hospital in Sydney.
the operation was bloodless. I was reparing my car the next day.
just don't think that you will be fine only by eating carrots
i did stop bical and the chemo for MDS because the liver takes priority. BUT... if my PSA becomes detectable or my hemoglobin drops below 10, i'll have to do something. Bical is a hormone so ya, if it stops working, it will start feeding the PCa... supposedly. I've also heard that intermittent vacations off it can bring back the usefulness again.
right now, the liver cancer is most important, because there aint too many options once that gets going full blast. Phyto-nutrient therapy is nothing to sneeze at, my friend. I did the research on it and it has one impressive track record for preventing the advancement of early stage cirrhosis.
ok, just consult your oncologist.
have appt with liver specialist (hepatologist) tomorrow. Need to know what %age of healthy liver is required to sustain life and do my scans and bloodwork so far indicate i have that %age? Wish they could tell me why i'm not in any pain from all the crap that's happening to my liver. You'd think my body would let me know some near-fatal activity is going on!!
yes, I believe you would start to have fluid retention in your body which would be required to be removed with niedel from your abdomen. You would notice big weight gain and accumulation of inner body fluids.
sorry my English is not good enough and I am not a doctor but I was watching something about that on the television. I am not sure if it would apply to your situation. But that would be surely sign of I believe the liver failure.
i still don't understand (I am not a doctor) why was it difficult for you to find a place to do the liver fibroscan?
from the liver fibroscan results you would be able to see how far away you are from the cirrhosis of the liver?
this is usually recommended for alcoholics and other people with addiction so they can correct there lifestyle and watch how the fibroscan numbers are improving.
here is about the fibroscan of the liver from Dr Google:
google.com.au/m?q=fibroscan...
i really hope that you will be able to find a place near you where you could easily monitor how your liver is improving from the results of the fibroscan.
google.com.au/amp/s/www.msk...
i'm way past fibrosis. MRI and ultrasound indicate advanced cirrhosis across both lobes and necrosis inside both lobes. Drs not bothering with fibroscan. Scans don't fix anything... they're only diagnostic tools. Reversing sclerosis may not be possible and certainly dead necrotic tissue is just garbage that rots where it sits.
whatever healthy tissue is left must be keeping me alive and that is what I need to know more about, how to possibly help it expand and maybe resorb useless liver cells.
probably grasping at straws but what's left for me to do?😪
What are the symptoms of liver fibrosis?
This is because liver fibrosis doesn't usually cause symptoms until more of the liver is damaged.
...
What are the symptoms of liver fibrosis?
appetite loss.
difficulty thinking clearly.
fluid buildup in the legs or stomach.
jaundice (where the skin and eyes appear yellow)
nausea.
unexplained weight loss.
weakness.
11 Jan 2018
healthline.com › health
Liver Fibrosis: Stages, Treatment, and Symptoms - Healthline
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