Please refer to my BIO. To see what procedures I have had
I just had a phone meeting with my oncologist everything has been going well on ADT
Started Orgovyx 11/20 /2021
Started Zytiga and prednisone 4/1/2022
Limited side effects -just normal flashes etc
I have responded very well and PSA at .03 right now —the DR is suggesting I go on a vacation on both drugs as of Nov 1 2022 to start watching PSA and make future decisions
He says the start date of a vacation is just an arbitrary date that no need to wait 18 months.
I have seen reports that 18 months is certainly better then 6 months and and just as good as 36 months.
Any feedback would be appreciated.
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Plankman
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"He says the start date of a vacation is just an arbitrary date that no need to wait 18 months.I have seen reports that 18 months is certainly better than 6 months and and just as good as 36 months."
He is right that there are no set protocols for intermittent hormone therapy. I think you have misinterpreted the "reports" you have read- there are none that determine duration of the "on period" or the "off period" for metastatic men. The only reason to do it is to give you a break. Hopefully, it will be long enough for your testosterone to recover.
My Mo just encouraged another ADT holiday for me. Based on my cancer type she feels the risks of rampant cancer growth are not realistic and she has had numerous patients who were killed by the effects of long term adt before their PCa killed them.
Dont know about trials data...but my data bank....i.e : my chemical addled brain says that prob 70 percent of HU guys who pack bags for vacation...have regrets ..keep the beast asleep...he is pissed off when you wake him....good luck
i'm with you, pal; been on a cocktail of bicalutamide, tamsulosin and finasteride since August, 2018. My uro-onc and hemato-onc have recently teamed up against me, because my liver enzymes spiked last month.
Right way, they blamed bical's "track record" of stressing the liver, then selling the fear of liver failure. After a few hours of research, i found consistently that obesity and lack of exercise must be the culprit. "Coincidentally," the ONLY thing I changed a few months ago was stopping all exercise. I have no idea why I did that, but in a way, glad I did. Have since restarted my exercise regimen with a vengeance, feeling better already and am sure within a month or two, the AST, ALT and ALP will drop to normal.
Further, elevated enzymes alone are not DEFINITIVE indicators of any damn thing without at least a dozen other liver tests corroborating that... which any hepatologist knows but infuriatingly, my "team of excellence" didn't! Scheduled appt with a hepatologist, to AT LEAST get a CT and/or MRI to determine probly NAFLD and reverse that bad boy with exercise and lotsa water.
I seriously doubt the bical. is the sole cause of the spikes but am cutting dosing from 7 days/week to 4 anyway. This will confuse my game plan (to determine which is f/u my liver, the bical or lack of exercise) but will cross that bridge when i get to it.
There are a few NCBI abstracts concluding that if bical does not affect you adversely in the first month, it is unlikely to affect you a few years down the road.
What really pisses me off is that there are about 23 possible causes of elevated enzymes, so why did my drs. jump right at the ONLY thing i KNOW is keeping my PCa asleep and asymptomatic? Why are they insisting on RP and/or RT when my PSA has been undetectable since Aug, 2018? Hate to sound like the lefty I am but bical. is really cheap stuff and is the SOC all over Europe until it stops working (sometimes it just doesn't, for many years; the most I've heard is 15!)... and RT and RP are bigtime $$-makers for rad-oncs and uro-oncs.
Just shows to go ya, gotta put your doctors' feet to the fire, brothers.
I do and always have respected responsible doctors... but do not worship them as semi-godlike people who know everything, throw herbs in bonfires and wear animal masks to hide their identities, much like Superman. That said, I've baffled doctors with home remedies from the tender age of 30, when I developed gallstones that 2 gastroenterologists insisted required surgery. A 3-day juice fast later, I crapped out enough gall-sand or sludge, whatever, to clear up the problem and now, 45 painless yrs later, still have my gallbladder, stones and all... that may or may not be affecting my liver enzyme levels. Will keep you posted. Next up, cured what 2 other GEs had labeled incurable IBS with daily megadose vitamin C (2g, which was a lot back in the 1960s)... with drs. wanting me on imodium for the rest of my life. "Vit. C for diarrhea? Wouldn't vit C cause worse diarrhea?" you ask. Apparently, we all have different bodies that respond differently to the same substance. Next up, high cholesterol and triglycerides. Rx by drs? Statin drugs (Simcor, basically lipitor + niacin) which at the time were coming under heavier scrutiny and controversy. A responsible naturopathic doctor recommended red yeast rice, which worked so well I had to stop the Simcor. Yes, ryr does contain a natural substance monacolin K (found in lovastatin) but because it doesn't require a Rx (yet), regular drs bad-mouth it every chance they get. Next up, mild ED, which I fixed with an African herb, yohimbe, which is now illegal OTC... a real success story for the AMA. Next up, T2 diabetes, which is so easily reversible, it's disgusting how the medical establishment keeps it hidden. They prefer to make gazillions prescribing all kinds of crap to lower glucose instead. The word immoral comes to mind. A high-fat (healthy unsaturated ones are best, but butter and coconut oil are really delish!), low carb diet yielded a 40 lb loss of weight and dropped my glucose to normal range, with an A1C that hasn't been over 5.8 ever since.
So ya, I respect doctors and the massive debt they went into to finish medical school and their devotion to their science and artistry.... but are they infallible? No effin way.
who said anything about infallible . and congrats on home cures......I do think many Docs advise weight loss and low carbs for many T2 diabetes patients...my wife is one. She not zero carbs..eg likes fruit, but she is low carb ( 50-80 grams per day), and could lose 20-25 lb (weight stable now ) ...still, even with drugs , her A1c is in high 7s.....just started to use a stepper to see if that helps.
I said docs are not infallible, to answer your question. 😜 The one high carb food that T2D folks just can't remove from their diet is bread... and that is the one that prevents their A1C from dropping down into the 5.6-5.7 zone, I believe. The four hi carbs that I stopped eating 100% were white rice, white potatoes, bread (of any kind, incl. multi whole grain, etc.) and pasta (again, any kind). I love fruit but try to eat it with nuts and/or whole grain food, to slow the absorption of fructose. Gave away my juicer, as it concentrates sugar. I drink about 40-60 oz of water per day.
I believe he wants to do the vacation to see what happens to PSA. And do a psma scan if it gets up into the .50 range. My spine lesion was not there in May on bone scan but was there in November - they where shocked at how fast it appeared
Metastasis directed therapy has no evidence to back it up, whereas ADT does. You can still do ADT and zap the met at T10 - why wait for it to grow and spread?
Thanks for the quick response. I did have 3 sessions of cyberknife on t-10 in December a few weeks after the bone scan showed the lesion - so we did go after that right away and had started Orgovyx mid November. I believe he just wants to know what else is going on - I’m a bit nervous about stopping ADT but I also would like to know what a PSMA scan may show and hopefully nothing.
Unfortunately PSMA scans where not approved yet in Boston when this all started.
It's a self-fulfilling prophecy. If you stop ADT in order to "know what's going on," something will eventually be going on. One should never defer treatment just to "know what's going on." The only purpose of any diagnostic test is to potentially change treatment.
Thank you for bringing up this topic. I am curious as to what the consensus opinion is on this forum. I’ve been on Orgovyx since 12/21 and assuming my PSA remains undetectable, my MO is recommending a vacation beginning in Oct., after 10 months.
That seems pretty lenient, based on the opinions of this forum, but needless to say, I would welcome the QOL improvement from the vacation.
I was on Orgovyx for 55 weeks & started my ADT vacation in mid-April 2022. My PSA went from 3.93 to 0.16 in that time frame. 3 months after starting my ADT vacation PSA dropped further to 0.01. I will test again in October and decisions will be made then. PSMA scan is in the plan if/when PSA goes up. I have been grateful for the break as it gave me the energy to really ramp up my workout routines.
As I have said vacations only give new cell lines a chance to find a work around to the drug. You have then ended that drug's efficacy and would have to move on to another drug prematurely.
Few Pca' s are "cured". The best we can do is put it into remission with surgery, radiation, chemo, or drugs. The longer we get out of each treatment is more "time" for us.
An interesting perspective. That points out that Pca is not just one cancer but multiple cancers. Some may benefit from continuous ADT and others more aggressive types "might" benefit from pulsed. The difficulty is determining which cancers would benefit with which ADT treatment. I don't think starting with "pulsed" is the way to go. Continuous can provide a real benefit and indeed has provided years of quality life to many including myself.
I am not a “vacation” type guy and I do not think that the current SOC goes far enough. I also don’t believe that one should give the little bastards an opportunity to raise their ugly heads. However, learned people are smarter than I am. However, why treat with palliative goals? Go for the cure. And to do that one should understand the term micro-metastasis.
The logical question to your MO is how do we tackle the unseen cancer cells floating in my vascular and lymphatic system looking for a place to colonize and grow? I suggest that you research the term and discuss with your MO.
"The logical question to your MO is how do we tackle the unseen cancer cells floating in my vascular and lymphatic system looking for a place to colonize and grow? I suggest that you research the term and discuss with your MO."
There appears to be no treatment that does that or purports to do that.
Are you aware of any with credible peer reviewed evidence?
Me and mostly eight others. Under the right circumstances it is possible.
My RO told me 8 years ago when I went on ADT that I would be on it for the rest of life. I accepted that as it wasn't until later I discovered this site and read that some people take vacations from ADT. That is each individual's call. I have more peace of mind getting the Lupron every 4 months. PSA for past five years has stayed around .25.
Park my comments in the FWIW category. You are your own best advocate. Knowledge is power. I've read the arguments for and against. I lack the skillset of a Nalakrats et al, to manage my health with various types of alternative care while on a break. Certainly a vacation should give you a break and allow your testosterone to rise. I don't know if the break would help with lost bone mass. I don't know if cardiac risks from ADT use will dissipate during a break either. I'm not a Doctor and I've not been given an answer from one because frankly, how could one know? There is no crystal ball here. ADT SE's can be managed in the here and now to an extent. I'm done rambling for nowncbi.nlm.nih.gov/pmc/articl...
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