Hi Warriors, I attend a bi-monthly PCa group of about 18 men; most have no more prostate. I still have mine and will be consulting with a urologist surgeon whom the group trusts. Dr. K's creds do not include oncology but he seems more knowledgeable in all aspects of PCa than some oncs I've dealt with. Here are the questions I'll be asking him:
I still have my gland; was diagnosed 2017, after MRI-guided biopsy + results by Dr. Kar. (MD Anderson, Houston) = GL 4+3. Had PSA 14.8
-- Dr. L. Rxed Casodex, Proscar, Flomax -- PSA <0.1 ever since, 3 mo. meas. intervals. If PSA rises:
*Which scan is best for detecting spread?
*Which is most effective in killing PCa cells, chemo or radiation?
*Are you up on research in new generation AR blocks/inhibitors? If casodex blocks PCa cells from feeding on testosterone, why use ANY methods to reduce T level?
*Does casodex EVER feed Ca? Is there a 100% guarantee that Ca will develop resistance to casodex?
*If PSA test measures exact amount of antigen (volumetrically) in my blood, is the so-called "masking effect" feared by critics of casodex delusional?
Would appreciate any suggestions for more questions or info I should know about before I consult with the expert. Meanwhile, fight on, brothers!
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RICH22
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thanx, Nal - have seen hundreds of your posts, trust you implicitly. Do you have any more info on that work-around process, assuming it isn't DNA mutation?
found this: An important strategy for the prevention and/or treatment of prostate cancer might thus be the action of soy isoflavones on the AR signaling pathway. The current review article provides a detailed overview of the anticancer potential of soy isoflavones (genistein, daidzein and glycitein), as mediated by their effect on AR.
Did you have metastases when you were diagnosed in 2017? If you did how many did you have and where were they located? If you had 3 or less distant metastases, treatment of the primary tumor could offer some advantage according to the Stampede study.
Casodex can feed the cancer and there is a decrease in the PSA when the casodex is stopped (Anti Androgen withdrawal syndrome). If your PSA stars going up when in Casodex, stopping Casodex could bring a reduction of the PSA.
Maybe I'm cheating, posting in this group because so far as I know, my PCa is still localized, no mets at all.
My dilemma is this: while casodex is working, perfect time to hit gland+bed, wide margins, with radiation.
BUT - still no guarantee this will improve my QOL, which right now is fine and dandy. I'm 73 and truly don't give one flying fig if I ever have sex again. Side effects of RT are way too frequent and debilitating.
My plan is roll the dice until more and effective AR inhibitors and/or immunotherapeutic methods and compounds are developed.
Radiotherapy to the prostate and whole pelvis radiation may have complications. Most people who had radiation treatment do fine and do not have debilitating side effects. I had radiation to the prostate fossa and the whole pelvis without any significant complication.
One has only one shot for a cure. I am not aware that Casodex treatment cures localized prostate cancer. If I were in your situation I will discuss how to treat the supposed localized tumor and try to achieve a cure of the disease.
With your PSA below 0.1, I believe there is not scan which could determine if there are metastases. People had done Ga 68 PSMA PET/CT with PSA <0.2 and the detection rate is 40% or less.
I believe most anti androgens and immunotherapeutic methods are approved and they will be approved for stage IV cancer. Unless you can afford to pay thousands of dollars every month or you could qualify for a clinical study, you will not be able to have access to new medicines for prostate cancer.
thnx again, and yes, hormones only "chase" cancer. Chemo and/or radiation kill it. But kill ALL of it? Not something I believe possible. Kill enough of it for No Evidence of Disease (NED)? Sure. Not an issue I even wish to research.
My initial 3T mpMRI scans showed 2 lesions. Biopsy determined only 1 was cancer. I had brought PSA 16.5 down to 14.8 using ayurvedic herbs, supplements, diet modification, but after biops, decided to go for hard stuff. 1 week on casodex dropped PSA to <0.1 -- was told recently that most uro-oncs won't even Rx it for non-CRPC, metastatic or not. This is beyond crazy, to me. If bicalutamide (casodex) has been used post RP, as adjuvant for RT, and I keep hearing reports that in Europe, casodex is used as monotherapy without plans for surgery or radiation... then I'm taking my cues from Europeans.
This link can give you references to the findings that androgen blockade in localized disease could be curative. The article is by Dr. Labrie, you will need to research the articles he refers to:
I have not reviewed all the articles so I don't have a final opinion about this situation. I remember writing back and forth with Dr. Labrie in 2004 and he mentioning and insisting that only metastatic prostate cancer becomes castration resistant.
wow! if that last statement is so, i hit the mutha-lovin jackpot! checking out the link right now. had other plans, cancelling them. wow... thanks brother!
seems Dr. Labrie revolutionized PCa treatment and was highly honored for doing so. after running down some of the studies he was involved in, i'm fairly certain that the combo i'm using will stay effective for the time i have left on earth. The addition of a 2nd gen. antiandrogen may be called for, if PSA rises. Again, I cannot thank you enough for the reference to Dr. Labrie, may he RIP. Dunno where you live but I'm in the N. Calif. area; my door's open to you, my friend.
I've had 39 sessions of IMRT totalling 78 Gy. This was to Prostrate bed, prostrate and pelvic nodes. The side effects, if done by skilled technicians, are not more than grade 1. Two weeks after RT I had no real side effects to complain about. Skilled and experienced technicians are needed.
of all the histories told to me by real people and online entities who are NOT doctors, i would estimate that those with radiation SEs ranging from horrid to minimal tally at about 1 in 4. That leaves 75% that report no SEs at all. So that's comforting... but not really. I have minimal SEs from the combo of poisons i'm on now. but the devil you know may or may not be better than the devil you don't. ah well, always a crap shoot, including death. Who knows? maybe it's better "on the other side" (roll spooky music in background).
Hmm... Hey Rich, here is a reply I made to another post 8 days ago:
"Today, I met with my MSK docs (MO and RO) and was stunned. Let me explain:
1) MO indicated that 1st line therapy ( lupron, Zytiga and prednisone) has caused anemia and wants to see me in 2 months. I get a monthly blood draw (CBC, CMP, PSA and testosterone.) I've studied the effects of the meds and I get it.
2) Now, my RO (he did my HDR Brachy and 25 days of IMRT) spoke with me and did a very brief DRE ( didn't go all the way, I guess just a post IMRT look around).
At the end of the consult, I asked what my prognosis was going forward.
He looked at me and without batting an eye, said "your cured"!
My dx was 8/19: G9,T3,high PSA 28 and no mets. Age 71.
I'm elated, but stunned with disbelief. I have absolute trust in my RO."
So, that was on 2/8. On 2/12 (after 4 days of disbelief and some self doubt) I called my RO and asked him to confirm the fact that I'm now cancer free. He reiterated that I am absolutely cancer free!
Ban roll-on, brother! lol -- my dad always told me to make sure there was only one hand on my shoulder during a DRE. RIP, Dad.
My anemia is due to bone marrow cancer (MDS, with -5q gene damage). Then there's the AFib and maybe CHF. Lemme tell ya about my grandkids, whom my daughter won't let me see. As Superman always says, "Up Up and Oy Vey!"
nasty little bugger, PCa. Had we the skill to prevent $$ from corrupting every damn thing, we would've eradicated it a long time ago. Maybe.
Was looking at the diff. between finasteride and dutasteride, tracked it to selectivity of cancerous vs non cancerous prost. cells. Then found repurposing possibilities of doxazocin as anti-carcinogen.
Bunch of clues, again, no research trials being done.
thnx for reply - thing is, i've heard enough stories about using casodex as the first and only monotherapy after diagnosis and men surviving 2 to 30 years before that work-around kicks in. Almost all uro-oncs agree that casodex stops working and then whammo, the new improved cancer kills you real fast.
Yep heard that same thing. That’s why I dumped or put on hold my local Urologist and went with my IU Health Urologist (s) and now IU Simon Cancer Center Med ONC. Downtown Indianapolis
I had casodex a few years after radiation. It did a great job for 5 years. After casodex I went on zytiga for 3 1/2 years then xtandi for nearly 4 years. I am a big believer in monotherapy. I have had a lot good quality life from these ADT drugs. I have tolerated them all very well.
I did get support from my doctors. Casodex was prescribed by an MO. I think he was getting frustrated with me. I think he wanted to get me on chemotherapy but casodex worked for a long time.
zytiga is very similar to casodex; both are 5-alpha reductase inhibitors - the stuff that turns testosterone into superfood DHT for PCa. Not a good choice for those of us with high blood pressure. xtandi looks good but also is the same class of hormone that blocks 5-alpha reductase. i may go with apalutamide.
It would be sad to see big pharmaceuticals company’s get their funding focused for the patient (US) so we would outlive our dreaded cancer....and die from age old age.
I'm trying to understand your situation. You are posting on an advanced prostatee cancer site, so I assume you have some metastases? So in 2017 you had a bone scan/CT that found metastases, and that's why you weren't treated? How many metastases and where were they?
As to your questions -
1. the only reason to have a scan is to make a treatment decision - what treatment decision are you trying to make?
2. Chemo is used for systemic therapy, radiation for localized therapy.
3. Casodex is a poor blocker of the androgen receptor (AR) compared to newer anti-androgens. Preventing testosterone production with something like Lupron is much more effective at preventing AR activation than Casodex.
4. Casodex may eventually feed the AR. Yes, it is 100% guaranteed that Casodex will eventually become ineffective or counter-effective.
5. What masking effect are you talking about? I never heard of this.
I have had docetaxel, casodex as I began ADT , then added Abiraterone and Lutetium PSMA.
I remain reasonably well and put a lot of effort in to exercise,( aerobic and resistance training,) to minimise the ravages of ADT.
We are not "warriors" or "survivors" or "victims".
We are blokes (a fond Australian term for men) living with cancer and eventually dying with and from cancer unless we are lucky enough to live long enough for something else to kill us.
Of course the cancer will find a way around treatment eventually.
That is evolution at work.
The hope is to find other ways to pressure the (our own) cancerous cells to slow down or stay quieter without making life so bad that you would rather be not around.
Be real not toxiclly hopeful.
I have banged on before on this forum about my dislike of the military metaphors for "fighting battling ,waging war, struggling etc " and preferring the idea of working to live with our own cancers because the fact is the cancerous cells are still part of us.
Living well with them is the aim till they escape quiet control.
thnx for the thoughtful reply - i too am antiwar, hypersensitive to the ugly militarization of society, here in the US. Was in the Antiwar (not Peace) Movement in the 1960s, burned down enlistment stations, marched in front of draft boards, handed out leaflets about the immorality, inhumanity and illegality of the Vietnam "police action," got beaten up by cops, rightwing thugs, etc., fully understand your abhorrence of war-speak.
However, "living with cancer" ain't as accurate as "fighting for one's life" in describing my feelings, brother... and our feelings are sacrosanct, are they not? So is self expression.
Lu177 and Zytiga aren't covered by Medicare and are quite costly and not an option for me, so count your blessings, mate.
i'm on a thalidomide derivative for bone marrow cancer; metoprolol to regulate heart beat for permanent AFib, maybe CHF too; valsartan +HCTz for high blood pressure in addition to the other 3 meds mentioned for PCa; got no cartilage in my ankles so limited to seated exercise.
Oh yeah, it's a battle, I'm a warrior looking for the latest weaponry, etc. Maybe one day I'll be able to see it your way - more mature for sure. As for the Tangerine Trollop, Herr Drumpf? My marxist hero Bernie Sanders will mop the floor with Dumptruck's dumbass hairdo. If Gandhi hadn't been a pedophile, I'd have still honored his memory. Hope this post isn't censored. >grin<
cool! my uro onc said zytiga is no better than casodex but i just don't trust the guy anymore. also, "Zytiga is used in combination with prednisone for patients with metastatic castration-resistant prostate cancer." I'm not in that category, and would rather avoid steroids anyway. but thnx for the info, buddy.
as far as i know, my PCa horses are still in the barn. I think Zytiga will be next up, if the casodex fails... unless i try flutamide... have to research "bicalutamide vs flutamide" as i did with "finasteride vs dutasteride" -- the latter pair had only 1 significant difference, although both are 5-alpha reductase inhibitors, i believe. finast. was selective for healthy prost. cells while dutast. selects both healthy and cancerous cells. Soooo i persuaded my uro-onc (who would not even discuss the issue) to Rx dutast. It didn't even work in curbing my urination urgency so I returned it.
hahaha -- know why Bernie wants free college for all? so everyone can learn the damn difference between socialism and communism! thnx for laughs, comrade. lol
so far, the 1st amendment protects my freedom of speech. Once that's gone... well i hope i'll be gone with it. we're all dealing with some really crappy futures; let's not bicker, ok? feel better, brother.
I never would infringe on someone's right to speak, that was the reason my two brothers and I served our country. It's just the political speech here that I find unnecessary. I think it's a good idea to point out what our politicians are doing or not doing to fight cancer and the cost of fighting it..... I do object to the snide remarks concerning anyone's political affiliation and those remarks do not help us fight the beast. I definitely will not bicker and will stick to humor......You feel better too.... and
No more shit..... Keep that Trump and Gandhi reference to yourself.... We don't need someone from the land of OZ criticizing our Politics.... stick to your own crap.....
At a PSA value of 0.1 ng/ml I think no scan will be able to detect anything.
*Which is most effective in killing PCa cells, chemo or radiation?
I prefer local therapies, surgery or radiation.
*Are you up on research in new generation AR blocks/inhibitors?
I think you should not ask this an excellent doctor. He is for sure.
If casodex blocks PCa cells from feeding on testosterone, why use ANY methods to reduce T level?
Casodex will not block PCa cells completely, it seems to be sufficient in your case though. If you reduce the T level in addition to Casodex it will enhance the treatment. Bicalutamide monotherapy is not mentioned in the NCCN guidelines so doctors will not recommend this.
*Does casodex EVER feed Ca? Is there a 100% guarantee that Ca will develop resistance to casodex?
The blocked PCa cells will mutate after a while and feed from Casodex instead of testosterone. This can be detected by the withdrawal syndrome. Yes, PCa will develop resistance to Casodex at some point in time. You can switch to e.g. Flutamide then.
*If PSA test measures exact amount of antigen (volumetrically) in my blood, is the so-called "masking effect" feared by critics of casodex delusional?
thnx for the reply - appreciate the time. My last uro-onc was NOT an excellent doctor; avoided everything i asked, about PCa and treated me for BPH, so i have to ask drs with what issues they are current, to put them on their best behavior. I've been branded "uncompliant" because I dare to reject their tx plans and depend on my own judgement for the bottom line. I listen when they have something to offer but all too frequently, they are corporate robots.
There seem to be 2 different modes of ADT: ONE prevents PCa cells from utilizing whatever T is available and the OTHER inhibits T production. A combo of both is what i've seen most used by metastatic CRPC men, with or without glands. When i've asked why the hell can't the rest of us use the same strategy, i have NEVER gotten a clear answer.
CHB or CAB, as i've posted elsewhere, should be the standard of care for men who've been lucky enough to be diagnosed early, men who are willing to compromise their sexual prowess in favor of staying alive, men who wish to keep their glands and are mostly old bastards like me, who don't heal all that fast from being sliced and diced or burnt even temporarily.
thnx for the flutamide suggestion - you're the 2nd person to mention that so i'll go with that, should the bicalutamide fail. I read this last nite:
"...androgen blockade given as adjuvant to surgery or radiotherapy should be classified as a treatment of curative intent for patients with poor prognosis non-metastatic prostate cancer. It should be clearly indicated that such positive results could even be recognized using a non optimal androgen blockade, namely mono- therapy, while much better results are achievedwith combined androgen blockade."
Auxium PET for scans but maybe not effective enough for undetectable PSA Ranges, I have asked for myself on a few occasions.. presently 0.10 for 4 yrs now..I posted on another site about a new PET using an improved Tracer recently, I will try to find it and post, might still be in trials?.
thnx for the reply - seems we're limited to PSA testing, when attempting to determine metastases and locations of same. Painful places that feel like the pain is coming from somewhere "deep inside" may be a poor way to figure it out and the one bone scan with some poison tracer showed one pitifully fuzzy blurred spot on a rib... not to mention that my far extremities were left out of the film entirely!! but hey, at least we try, yes? good luck, amigo!
Please take your socialist claptrap to appropriate web sites. I do not come to this site for that type of rhetoric, I get enough of that from other mediiums.
"One hundred percent guarantee" language is a huge turn-off in any conversation with a physician, or for that matter, a car salesman or anybody else. Can you think of ANYTHING in life that offers a 100% guarantee? Besides death? Re-think that question...you will get better information that way.
thnx for the reply -- i agree. Unfortunately, my brooklyn stays with me no matter where i go. lol -- diplomacy was never my strong point. gimme straight answers or suffer the consequences is probably a very poor attitude with doctors. In all fairness to me (ha!), I always open the conversation with a statement about how the highest respect for the medical profession is hard wired into my Jewish DNA. Then if i gotta get tough with them, so be it. take good care of yourself, cousin!
Tall Allen gives good summary of options you have. But a good oncologist should have been able to give all the answers you seek.
PsMa Ga68 Pet/CT scan would suit you with high Psa.
Beam radiation EBRT, IMRT, kills Pca cells but is only good for targeting PG or other individual mets and cannot be used where countless mets exist.
Chemo also kills Pca cells but is systemic, goes all over your body causing lasting horrid side effects.
Both beam RT and chemo may not work very well. Both were not very effective for me.
Lu177 is a form of targeted nuclear radiation that may work better. 70% of men who have PsMa scans that indicate it ought to work get a benefit where mean life extension is 14 months. I started mine in Nov 2018, finished 4 shots by May 2019, Psa went from 25 to 0.32 last Nov 2019, but now Psa is doubling each month and is about 1.5.
Casodex usually works well, but not for very long. I got 6 months. A friend found Casodex boosted Psa from 7 to 40, so it fed his Pca. Zytiga gives 8 months Pca suppression, its what I got, Xtandi is similar. Some get more time, some get less time.
I began Casodex in 2016 when I had a second lot of "salvation" IMRT to PG which could not be removed in 2010 at attempted RP. My Psa went from 6 to 0.4, and masked the effect of IMRT which I think did very little to kill Pca in my PG, because later PsMa scans showed Pca alive in PG.
I don't know if this group is only for advanced Pca or not. How does a man really know if he has advanced Pca or not? he may have many mets and thus have advanced Pca, but not yet be aware that he has these mets because scans cannot see the mets yet. It is usually a big shock for a man to find out he has just a few mets, and where these are small, there may be countless other smaller mets which later scans will show up. That's what I found. In fact, I think most of my mets began in years before diagnosis when my Pca in PG probably began in 2004, when Psa as about 3, so no action done, and with biopsy being done in 2009 when Psa went over 5, and they found 9/9 live samples, and Gleason 9.
So I was diagnosed too late for an RP to be effective.
The ADT worked well from 2010 to 2016. But a pause after first 2 years of ADT showed EBRT I had didn't work. I think the ADT supressed the growth of mets as well as Pca in PG. Docs have not yet told me I have mutated forms of Pca that need additional treatments because they did not respond to Lu177 etc. I may need more Lu177. Treatments with PARP inhibitors after DNA analysis may/may not work even if you have Brca2 gene. A friend was Brca2 positive, had PARP, Psa went from 40 to 432, a pile of new mets appeared in his liver and docs had no treatments for these because they were not showing up in PsMa scans, so my friend got weak, and soon died, 3 years after diagnosis at 57.
His RP had not worked, response to ADT was 3 months, Casodex fed Pca, 10 chemo shots failed, and then he dithered before getting Lu177, but he got too sick to get that, so he died.
He left behind a lovely wife and two kids, and had been major breadwinner, so his death made life real bad for 3 other ppl.
So nobody can expect any Pca treatment to work for a very long time.
But I've survived 10 years, and last week I cycled 211km around my town at 72yo, so I am doing OK, but I feel that things could rapidly change to be worse at any time.
Because my Psa is now rapidly rising, I am forced back to the treadmill of getting scans, conferring with doctors, choosing a plan.
I had CT scans last week, and may need another PsMa scan when Psa rises a bit more so we can see more, and maybe I get more Lu177. Recent research says that getting more Lu177 can work very well. Just not in 100% of cases.
Since 2016, my oncologist had to learn all about theranostic nuclear radiation because its a new form of targeted treatment. So he and I both learned together.
Unfortunately, chemo cannot be targeted, where the chemo is taken to Pca cells and made to work there, and nowhere else. If that was possible, chemo would work much better than it does, with less side effects.
totally agree. Found 2 doctors that were injecting immunogenic agents directly into or near tumors. Results were mixed to none. Williams Cancer Institute, Drs. Jason Williams and Mark Rosenberg -- immune checkpoint inhibitors (Yervoy, Opdivo and Keytruda) these drugs can be injected right at the ablation site. The identification of receptors used by the cancer cell to shut off the immune system, has allowed the development of effective immune therapies. When these receptors are blocked, the immune system has the opportunity to recognize the cancer and learn to attack it. The main drugs currently available are CTLA-4 inhibitor (Yervoy) and PD-1 inhibitors (Opdivo and Keytruda).
for sure, genetic hanky-panky is how cancer fools our natural immune agents. Cover up or destroy those nasty little sheep's clothing that cancer uses and whammo! our good ol' array of antibodies, leukocytes, lymphocytes, IgG, IgM, IgA, IgE and IgD will kick ass!
Watching some New Yorkers get pissed off at each other can just make someone from California feel warm. I see you have all made up. That is nice. No more politics or fat wives please.
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