Just wondering i do 5 mg of prednisone 1000 mg of abiraterone and Lupron every 3months plus bone so I've been on this now 10 months PSA is less than 0.001, so at what point do you take a break looking into the future how do you know when to take that break and what if the cancer comes back do you start again.
when do you take a break: Just... - Advanced Prostate...
when do you take a break
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jptss
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6 years 9 months, never taken a break, worried cancer will get a foothold
Me too......5years and 4 months
may i ask what ADT/ARi you are on without having to ho through everyone’s bio?thank you
Since 2018 I was on Lupron and Casodex. I discontinued Casodex about a year and a half ago Starting Nubequa. I still get Lupron shots every 6 months. T les than 10. Psa down to .006 the last time i was tested. (Feb. '23)
Thank you were on same page I'm new at this so just building knowledge.
You can take one whenever you need one, but it may allow progression and there's is no guarantee that your testosterone will recover enough to make it worth the risk.
Thank you
just IMHO , but if you have your foot on it’s neck and are holding it down …. I’d keep my foot there and not let it get back up and smack me. I’d keep the advantage until it doesn’t work anymore.
Just say’in
I’ve taken two vacations. You can see the details on my profile. It’s a very personal decision. A risk vs. reward calculation. For me the reward is worth the risk, though I really don’t feel, maybe foolishly, that I’m taking a terrible risk. For others the potential reward isn’t worth the risk.
If you do decide on a vacation it may take several months for your testosterone level to come back, assuming it does, which as TA said, is not a given. For both of my vacations my T level came back well into the normal range but it took 4 to 8 months. At my 4 month MO appointment it was still very low. At the 8 month appointment it was back to normal. The side effects started slowly subsiding at 4 months.
Good luck.
I agree
How long were your vacations, and why did you decide to go back on when you did? Thank You for your info
Vacation 1 was about 10 months and vacation 2 was about a year. Both times the vacation ended because my PSA started to rise. There was no predetermined level that was going to end the vacation.
For #1 I think it got to above 2 and I had new bone and CT scans that showed the cancer was active again but hadn’t spread further and I went down the RT path.
For #2 when my PSA was 0.9 my MO ordered a PSMA scan which showed 4 small spots on my ilium close to my previous mets. They may have been there all along but too small for the other scans to pick up. After discussions with my RO to see if he recommended RT to zap the newly found mets (he didn’t) I went back on Lupron.
As you can probably tell by reading my profile I will continue to take vacations as long as my cancer is under control and the vacations haven’t allowed it spread. When that happens I’ll have to reevaluate.
Thank you it is all great info for anyone thinking of taking vacations.
Did you Zap your newly discovered mets?
No, my RO felt that additional RT would not be a viable curative treatment option.
Why not? I would zap it if it is safe to do.
He cited studies that showed RT for more than 5 mets did not have any curative benefits and more than that it seems that RT is an exercise of whack-a-mole, and ADT would be a better option. With the 4 new mets I have seven, albeit small mets and all close together. He did say if they were causing pain he would zap them.
I would zap them. I believe 4 is the limit on the bone scan. But again if you can do it safely why not. I am not a doctor, but we have to fight and not to surrender. You do what you feel comfortable with. If I would have a visible met in my neck I would zap it. You can ask for second opinion. You could even consult a Dana Farber radiation oncologist about that. I am not a doctor and can't make a decision. It is only my feeling what could be totally wrong. If you have lots of other options than consider them also. I did avoid chemotherapy as I zaped my prostate. You are delaying more advanced therapies. Good luck.
I understand. Of course use ADT. My cancer was CRPC in my prostate until we radiated it. Sorry for misunderstanding. Still you have to be comfortable with your informed decision.
If I were castrate resistant it’d be a different story. I’d be zapping anything that popped up if I could do it safely.
Exactly
there is something to be said at keeping the beast content by letting it feed occasionally
Bravo with the 001! Looking into the future is not as helpful as taking it day by day . IMHO .. Old school says don’t stop it if it’s working ! My doctors never would tell me to stop adt . I did an orch two yrs after imrt , lupron and tak -700 . I dropped the lupron shots then . My idea . Even then I stayed on the tak for 7 yrs , five yrs after the orch . I dropped it 9 months ago . Psa<.1 STILL .. THE ORCH WAS My own idea also .. Personally , dropping adt from a clear status is risky . My 4 mos never would go with that . . No one likes adt . It has devastated me . Pc almost killed me with k failure before I was even was dxed. I never want to go back there again because I saw it’s teeth . And they’re deadly . But still by some miracle now I still have no -p c seen . Not t is a major problem . It won’t kill me . Only weaken me . Guys are in a hurry to feel the old self and run macho again . I just want yo live . There is no cure for # 4 pc . Anyone that tells you different is full of it . Some have been on adt for decades.. . I took a big risk by not going to an uro until it was almost too late . Now with just 3 T for over 8 yrs I’m just not the risk taker that I was before this . I do understand we are all different . But the pc is the same beast and our mutual nemesis out to kill us . If i had started out in a more mild condition I too might have considered stopping adt sooner . What you choose . I d tried to stay on it for at least five years . That’s just me . To Each their own … Good luck!
I really want to Thank you all for replying.
Hello jptss, like you I am undecided whether to take a vacation from ADT. The SE are really getting me down but I have to agree with TA & others here it is better to stay on it to the bitter end or the bitter end will come around quicker than expected.
I took a break because my Dr said my treatment was done with curative intent so the only way to know if it worked was to stop. T came back in about 3 months and it was obvious it hadn't worked but I had to wait until my PSA hit 2 to get scans and the conventional ones showed nothing and the PSMA PET showed 5 spots upper spine. The radiation had done its job but the cancer had progressed past conventional imaging probably before my original dx in my opinion so had I gotten the better imaging up front I would have known not to stop ADT. Timing and hindsight. So back on ADT for life. Which is where I thought I would be hours after the results of my first PSA test. At least I had a little hope for a few years.
9.6 years in, never have and never will take a break. At the moment the beast is locked up, I'm not going to let it out again. Unless it beats the medication 💊
Wow... almost 10 years. Gives me hope. Thanks
Your welcome, you can beat the beast, stay positive 🤪
Wow---what drug(s) are you on? Have you been on them the entire time, and no hint of castration resistance developing?
Hi Gary, sorry I didn't get back sooner, I had to look everything up.
I was diagnosed in the December of 2013, having seen the Urologist in the October/November time. He said they would carry out a biopsy after Christmas. The cancer had spread outside of the prostate but fortunately not into my bones or back or anywhere like that.
The PSA hit above 150 and the treatment was as follows :-
50 mg of Casodex daily + 30 mg of Lupron, injection every 6 months.
Then as the PSA didn't come down much the Urologist switched me to :-
50 mg Androcur daily + 30 mg of Lupron every 6 months.
The PSA fell under the normal limits but rapidly rose back up.
September 2018 he put me on Zytiga 1000 mg daily + 30 mg of Lupron every 6 months.
He said it was a very aggressive cancer.
June 2018 PSA 9.58, by April 2019 the PSA has fallen to 0.527.
I've changed Lupron to 3 monthly, I was as sick as a dog before that. The PSA has fallen steadily and an average from October 2019 to date would be 0.067.
I hope that helps you, I'am very fortunate.
Thanks for your reply, and I am happy for your treatment success! I have also had good success with ADT + Zytiga for over 2 years. I think it is great that you have been able to continue it for 5 years without developing castration resistance. I am encouraged when I see that some men can do so. I will probably be getting off the abiraterone soon but continuing the Lupron.
may i ask what ADT/ARi you are on without having to go through everyone’s bio?
thank you
Lupron 30mg quarterly
Read my reply to garyjp9, it might help
My personal opinion is that there is a gray area between black and white, between vacation and no vacation, which I guess you might call a slowdown in treatment. If a three month dose of the drug (Lupron) keeps the beast down for six to eight months, then why not take the drug 3-month dose every six months? In my own case, I had a vacation for four years and my PSA rose to 36, before resuming Lupron, and my PSA promptly declined to <.01, where it has stayed for the past three years with 3-month injections. I'm thinking vacation but of course my MO is not. And I wholeheartedly agree with those who are determined to stay the course, as everyone must decide for their own case, which is unique. But I am thinking out of practicality that the drug might be in need of control as well as the beast.
I think heat is an FDA approved therapy. It is not an alternative therapy. It works by killing the cancer. (As far as I understand.)
I think so but regardless, it is used in medicine with too much precaution and concern, imo.
Applying heat was a good idea. How did you implemented and how often and how long? Etc.
I'll be happy to pass on whatever you need to know. I am doing several things and they were complex in the beginning but now they are down to more or less routine.
First is hot showers. I believe that was what eliminated the metastasis spots on my skull in 2016. I had a few spots on my skull that showed on scans. I used very hot water on my skull, during a shower, which I did not measure temperature for but now I would estimate it was in the range of 110 to 120 degrees. I have since bought thermometers but they no longer work, broken or dead batteries. The one I use lately is like a dial with a metal probe, a cooking thermometer. I understand now what it takes, and how that range of temperatures feels. It is painful, but I use the very hot shower method for short periods, so it is a bit painful, but tolerable. When I used it for skull mets, years ago, I usually used it for a count to 25. "One million, two million, three million, etc." It is not the hottest temperature on the shower valve, but I guess I can define it as very hot. It feels annoying but it does not burn. It turns my skin red for a short period, and then leaves no side effects.
Every shower valve is different but in the US, they are required by law to limit the temperature to 120 degrees F. Also the water heater at my home is set at normal. I have measured the temperature and I have pretty much learned how to make it "very hot" most of the time, without actually measuring the temperature with a thermometer.
One of the spots on my skull kept recurring, (a lymph node behind my left ear), and it caused headaches when it grew. So I used a more powerful heat method and after months of recurrences, I used a hot 2.5 pound weight from my barbell set. I put in boiling water in a frypan, then cooled it to roughly 150 F. Then I wrapped it in a kitchen towel and put under my head, on my pillow. The towel allows moderation of the heat. The objective was to get the temperature inside my skin and to the skull bone level up to 110F for an extended period of time. Often it was unbearably hot so I lifted my head for a short time and then lowered my head. The barbell weight stayed at very hot temperatures for a long time, ten minutes or so. Each time I did that, the headaches vanished and the pain disappeared...for days or weeks. But it took several attempts to eliminate it entirely. I have not had recurrence of that spot in many months, perhaps a year now. I believe it is gone, and the cancer cells have died, and that problem is solved. Just to be sure, I heat with very hot shower occasionally.
In 2022 I had two remaining pain spots on my body, side rib and spine T9 between shoulder blades, which I have treated similarly. The pains have come and gone, for years. They are deeper below the skin than the skull mets. The hot barbell weight and showers did cause their pain to go away temporarily, but they kept coming back pretty regularly every couple of weeks. In the end of 2022 I applied magnets, and they seem to have gone for good.
As for the magnet method, I taped five 3/4" diameter refrigerator magnets together to make a sort of patch, which I taped on the rib lesion. It seems that after two days the magnets somehow kill the cancer cells. This is a bit complex. One must use the north-pointing face of the magnets against the skin. I hang the magnets with a string in a doorway and the south face points north. That is important. Apply the south face to the skin. (S=skin) The size of the magnet patch must be greater than the size of the tumor.
As for lycopenes, I also drink a quarter cup of low sodium V8 juice every morning, sometimes more frequently. And I have lycopene pills that I empty in cooking pretty much once every day. Those pills are 20 mg. I beieve I am keeping my blood lycopene level up, with about 50 mg per day total.
I am also taking lupron injections quarterly, and that deserves due credit. My PSA has been constant, <0.1, for almost 3 years. It had risen to 36 after a four year vacation from lupron three years ago. I was taking Lupron intermittently starting in 2012 when I was first diagnosed with "advanced" PC. At that time I had two sore spots, near the location of the biopsy, tailbone and rectum. They disappeared after using Lupron and lycopene consumption, for about a month. I believe that by augmenting the Lupron with other modes of attack, cancer cells and tumors can be eliminated permanently.
Where did you find out about anticancer fighting properties of the magnet? It is unbelievable that we are poisoning ourselves with very toxic medication but neglecting something so simple like heat. How often did you apply heat and should we apply daily or even more often for the best effect in order to avoid repopulation of the cancer? I was hot showering but I am not sure how effective it was. I just tried in a hope that it will help me. I believe rib mets and skull mets should be treated with heat. I don't believe that my oncologist ever mentioned heat to me. Very interesting.
I simply Googled magnets and cancer and found something by a Dr. Philpott titled "Cancer, the Magnetic Answer". It was difficult for me to interpret, deeply scientific stuff. Also, he used experimental magnets and magnetic matresses which I believe could be purchased online, but quite expensive. He wrote that a man with prostate cancer used a mattress and his PSA fell from 28 to 2 over three months. That was a few years back. I ordered some refrigerator magnets online and tried taping them to my mets, and by golly after two days the mets vanished. I see this other article now here:
healingcancernaturally.com/....
In my own use of heat, over the years I have used it many times on many mets. I originally applied it for a duration of 30 seconds at 110-120 degrees F, and it seemed to eliminate the pain immediately, but it was too hot and kept coming back after a few weeks, so I used it for 60 seconds and 110 deg to see if it would permanently eliminate the met, and it seemed to work well to avoid repopulation of the cancer.
I tried also a portable sauna once every two weeks at 130 F for 25 minutes but no longer use that much. Questionable effectiveness, especially on the neck and head..
p.s. I was stumped for a while with the meaning of "negative side" of a magnet. I researched and found that it means "south side".
pps It is just the skeptical nature of man to question anything beyond professional learnings, such as heat and magnets. Also, there is the tendency to protect one's profession from alternatives.
Heat is FDA approved and if you are lucky and a met is close to the surface you should be able to eliminate it. The problem is that it is more of a local therapy therefore not a system therapy. Something like spot radiation. It can help but a cancer is still there. I was taking doxycyclin plus metformine plus 1g of vitamin C every hour for 5 hours a day every day. I was also taking statins and other things what I don't want to disclose as for some people it could be dangerous. It could cause bleeding. Therefore better if you don't use it. I am not sure how much all of this helped but I now stopped with everything except I should maybe continue with the oral vitamin C. I would not use IV vitamin C as it has short duration and I don't want to experiment on myself if I believe that it has no effect. I am trying not to use too much medication. I am only on Degarelix injection. I am lazy.
I believe from my past readings and lymes diagnosis is was originally performed it Germany where they heat the whole body to 106-107. They started noticing patients who also had cancer had positive results.
Here is a simple and decent explanation of the different types of hyper therapy.
lymemexico.com/how-hyperthe...
Thanks, it is always good to have options. I will forward your link to someone who either run out of options and to someone who want to be treated holistically (whatever it means). Thanks again.
From the internet about Hyperthermia:ncbi.nlm.nih.gov/pmc/articl...
Hi. I was on Casodex for 2 years and took a vacation Feb 2017 with PSA<.01. By Nov 2017 it began doubling, a scan showed an oligometastatic tumour. Which was zapped but there has been tumour activity ever since. Makes me think I should’ve stayed on it and doubled down. Just my example. Good luck.
When you stay on ADT, your cancer is working to eventually become castration resistant to it.
Treatment has improved the detection of where the cancer is, resulting in the potential to eradicate it or significantly slow it possibly for years or decades in some cases.
If you have a very slow increasing PSA off ADT, you may go years, many years enjoying a normal life or near normal life. Essentially adding no risk and much reward.
You have to become your own expert on your cancer. Doctors will put you on SOC, and SOC today leads to death.
We often forget that it's the treatments for PC that destroy your QOL. Not the cancer itself.
You lose the ability to take potentially curative actions while in ADT, everyone must measure their own risk reward, in determining their care based of their PSA it's doubling time, location, previous care, potential future care, etc. Your own decision on what is the best route over time may change based on current data.
If you have a doctor that is not of the mindset towards cure your going to be on ADT for the rest of your life. Most oncologists are just regular people following someone else's script. They don't know any better.
In addition to the points made above, it depends on the state of your PCa - whether you're high or low volume (mets) and symptomatic (have pain) or not. I'm high volume and have some mild pain from bone mets so there is no sense in me considering taking a vacation from the ADT and Xtandi that I'm on. Yes, it makes me feel like cr*p and will inevitably lead to CRPC but I can only hope that will be several years rather than months down the road.
I have been on the same therapy for almost 10 years. I took a treatment break and it lasted a year. I let the PSA rise 3 consecutive times and went back on treatment. PSA dropped again and stayed there.
what ADT and ARi are you on for the ten years? It’s interesting that … well I thought we all have dormant cancer stem cells and also non PSA senescence cancer cells. It’s interesting you’re cancer stem, and non PSA cancer cells never woke up.
Are you doing any special diet or supplements or exercise?
Thank you for your important input
I’m on my present holiday about a year. PSA still undetectable. T only at 50
My $.02 and reinforced by my MO is that we with #4 APc need to buy time for new drugs and treatment regimes to become available. Interrupting ADT could shorten your wick. I have ADT/Abi SE's and aside from exercise and Venlafaxin, tell myself on a regular basis "Suck it up buttercup." My dad and uncles all had APc and toughed it out under treatments that are primitive in comparison to what we enjoy today.
I don’t think there is very solid proof that says one may go resistant sooner on cADT
That is my ONLY concern about cADT. If I find the answer to this question, I would never take a vacation and stay on it for life. It OBVIOUSLY works in killing PC.
There is a large random element in PCa outcomes. Some people never get treatment and live for years to expire from something else. For #4 APC ADT/Abi buys time (but one's mileage will vary). We see tons of posts about things people do but without RCT's its impossible to tell if its random luck or caused by whatever they are doing. (RCT = randomized controlled trial).
I think it depends on whether the radiation therapy was for cure which I assume it was. If that is the case then there are various protocols but recent data suggest 2 years of therapy of anti Testostetone therapy is better than 1.
3+ years and I'll continue as long as the blood results show no progression.
Have you had distant metastases? When we’re you first diagnosed? Was your prostate removed or radiated?
A little background helps us put your holiday in perspective.
Thank-you
If you have not seen my posts on TET (testosterone) and PCa, take a look...it appears that the SOC does not consider that its not necessary to take TET to zero...a lot of our symptoms while on ADT come from having no TET...see if this helps. I am done with my ADT treatment and stopped at 21 months total...if my PSA comes back I will go on intermittent treatment but under a BAT (bypolar androgen treatment) regime...I dont want to live with zero TET again. Rick
healthunlocked.com/active-s...
Had IMRT and ADT, then rapid rise, cancer went metastatic and castrate resistant. Had Provenge treatment and spot radiation to the one vertebral met. PSA dropped to unmeasurable.After 3 yrs on ADT, and PSA undetectable for 1 yr, my oncologist reluctantly agreed to let me take a vacation, with the agreement that I'd go back once my PSA hit 10 - he said that would be 9-12 months. Vacation lasted over 6 years!!! Interestingly, I'm now castrate sensitive again. so the vacation may have re-sensitized the cancer.
It's a good question, and many answers by experience that pretty much spell the path out clearly. It is a question, despite my unusual and persistent presentation of MY PCa, that I've also presented to my MO. His answer was never! Lol...
I've experienced few of the side effects other than some serious fatigue. I'm trying to combat that the usual ways. But to know that if you take your foot off the gas and let the cancer catch up... Is a concerning place to be. My PCa has come back, or been persistent despite surgery (RP), then salvage RT & ADT, then Surgery which found StgIV mets, the Chemo, and then ADT... Now recently blasted what was found with RT, added and ARSI to the ADT, plus icing on the cake with BRCA Drug Olaparib on top! So far so good... But I would be uncomfortable to take my foot off the gas! As much as I want, really want to try an alternative path, like BAT, or even a short vacation, just to "see" what happens, I'm not sure I'm brave enough to try any more. As noted above, if it works, keep at it! Why change a thing?
I know, that the drug therapy line, can eventually instill resistance, as is the way with things, but still. And these are the questions that really take us to talking about the use of drugs, and maybe requiring the "Minimum Effective Dosage" rather than the "Maximum Tolerable Dosage"... Lol. Is crazy when you venture down that rabbit hole (Pharmacokenetics). I might, just might go more explicit in this regard with my next go-round with my team. Discuss monthly blood draws and see if reduced dosages maintain the same response(s) by my body... As always, is a conundrum... And everyone is different, don't forget that!
So as the Captain of the Titanic proudly shouted! "Band Keep PLAYING we are just taking on a little water!!!"
Hahahaha, Keep on Truckin'
Best Regards
Thank you for you post and question! I too am considering a vacation due to side effects of Lupron. Is anyone experiencing pain and swelling in feet and hands? I have the hot flashes throughout the day which I expected but hands and feet are getting a bit much.
I run 15 to 20 miles a week I don't want to my legs and feet hurt but running work out makes it not hurt so much, just me it might not work for you.
You may find that your swelling can be reduced greatly or completely eliminated by aerobic exercise. Cycling or running, How much your able to do may determine how successful you'll be. I found on ADT it was no possible for me to run due to weakness in all muscles, and weight gain from ADT.
But cycling would prevent swelling. I cycle alot, several hours per day, 4 to 6 days a week. But when I stop exercising for many days swelling often returns.
My hubby has been on an ADT break since June of last year after just 18 months of treatment per his doctor. His scans have remained clear and PSA undetectable. Next scan in May. Testosterone is presently at 118 following an all time low of 7.4.
Don't break a take!!!
j-o-h-n <===<<< Senior management is about to spike my spikes....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/06/2023 5:46 PM DST
j-o-h-n,
cool your jets old man. 50% of a j-o-h-n is better than 0%!
Never take a break!
If you read kayakbob above it is yet another one of many examples why your blanket comment doesnt apply to everyone. This disease is so unique to every individual. Some of us can take long vacations and see no downside while others get progression rather soon. The moral of the story is, imo, know your own cancer very well as it’s probably different than most everyone else’s. Persue your treatment plan accordingly. Part of knowing your own cancer is to pay attention to the stories on this blog and study those individuals whose cancer is similar to your own and learn from their experience.
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