I'm just starting my journey which will involve ADT and RT. The RT is scheduled to happen in early July and ADT to start soon. No spread according to Pet scan. Gleason 4+4 and PSA 7.9. Absolutely no symptoms whatsoever, feeling good for a 65yo. RO doesn't seem to be in any hurry.
I have a few important events coming up from March to the end of May that will require my health to be as good as possible and so I am loathed to start Eligard, as I have heard that it can be pretty brutal. I am going to start Bicalutamide 50mg for a few weeks prior to starting Eligard.
My question is, could I hold off taking Eligard until early June and just remain on Bicalutamide for 3 months until early June when I would then start Eligard?
My reasoning is, that taking Bicalutamide may be much more tolerable as far as side effects go but at the same time hopefully should help slow down my prostate cancer until June / July.
By the way, Bicalutamide has a review score of 8/10 for side effects & overall efficacy Vs 4/10 for Eligard. That's according to Drug.com.
You can do that but you should take 150 mg Bicalutamide instead. Or three 50 mg pills. Studies show that 150 mg Bicalutamide is almost as effective as Eligard.
I would encourage you to follow the treatment advised by your doctor; or ask your doctor the pros-cons to make a change and see if he/she offers an alternative.
I did NOT ask my doc for changes for a 4 year program of Lupron/Eligard/bicalutamide despite wondering if I would experience all the negative aspects of ADT side effects. While some, perhaps even many, experience some degree of side effects from ADT, I decided that to not follow my doctor's recommended treatment would be a BAD action. For 4 years, I had NO ADT side effects - you may not either. I chose not to risk my doctor's advice and believe it is the right choice. I wonder what adverse impact my health may have been exposed to if I had not followed the treatment plan? My doc also discussed treatment options with me but she did not waiver one iota about the ADT program that was part of her main recommendation.
I’m doing tri modality .. brachytherapy, LINAC, and on my 9th month of Bic+Lupron.. I was diagnosed with a Gleason 7. I wouldn’t screw around and find out.. best to aggressively attack the cancer ..I was given ADT immediately .. which made my PSA drop from 18 to .1. 6 months is a long time to wait .. you have this important chance to squash this don’t think short term.. you will be impacted by the ADT but for me not super bad .. some hot flashes , emotional outbursts, lost libido .. but hoping when finished these symptoms will go away . Best of luck to you . Read as much as you can here.
There is this saying, I most highly subscribe to: "A single experiment is equivalent to the collective opinions of ten (10) experts.
The experiment: Take the standard 50mg/day Bicalutamide dose for 2-3 weeks one month-tops and have your PSA tested before and after. The % PSA drop will tell you your sensitivity to this drug. You may get a huge surprise finding out how little you need to keep your PSA at bay. Silly doctors treat all people in a "one size fits all" manner. Nothing more stupid than that. To give you a hint, you have been advised on a monotherapy at 150mg/day dosage. Go to this link to learn what 150mg/month ***Yes, NO typo here, 150 mg per MONTH*** does to me.
You can also get monthly Firmagon (Degarelix) injections which have less side effects than eligard and you don’t have to take bicalutamide prior to the eligard because there is no testosterone surge with the antagonist hormone therapies. Even better, there are antagonist hormone therapies in a daily pill with mild side effects. My advice is not to wait. Gleason 8 is high risk and more aggressive.
I was told when I was first diagnosed that bicalutamide is prescribed to stop the testosterone flare often associated with ADT drugs. It was not recommended as a mono-therapy due to unfavourable clinical trial results. It was also suggested to me that after a couple of months bicalutamide loses its efficacy and starts working in reverse stimulating the prostate cancer. I have been on Zoladex (goserelin) for a very long time (9 years and 8 months) with very few side effects. Eligard is not the only ADT option. Another possibility is Firmagon (degarelix) which prevents the testosterone flare. I was on Firmagon for a year as well but switched back to Zoladex which only requires an injection every three months as opposed to monthly. Hope that helps.
RyderLake1 ---- Agreed, one reason is that bicalutamide is prescribed for a short period before the first injection of Lupron or Eligard to minimize initial flares. I also remember from my doc that bicalutamide is prescribed for extended periods because it blocks PCa cells from uptake of testosterone to "feed" on. Lupron/Eligard minimizes/ stops testosterone production. Because testicles are not the only body part that produces testosterone, bicalutamide is there too because it theoretically stops cancer cells of taking in testosterone from these other sources.
Hi everyone who took the time to answer my query. I really do appreciate your time,
It appears as though I do need to do a bit more research into this. You may be asking what I am worried about with all this ADT stuff,. Well take a look at the link below and you will understand why I am not that keen to start filling my body with poison.
Yes I am fully aware that the alternative of not taking it, is worse - but in my case it is just a matter of the timing of taking it and looking for an option that might work. When you read that nearly 60% of the reviews on drugs.com clearly state that Eligard is a dreadful drug, with some saying it should never have been approved, - you do get a little nervous about putting such stuff into your body.
You don't seem to understand that (1)adjuvant side effects are different from permanent ADT side effects or that (2) some side effects rarely occur whereas some side effects (e.g., loss of libido and hot flashes) are more common. Anecdotes are no way to find out what to expect.
I really hope that is the case, but after reading what the majority have said on the website i sent, I'm kind of thinking that these are real life people providing real life experiences. At what point do we say this is no longer anecdotal but actual reality? If only more people would come onto these forums and review sights and say they found ADT quite ok to handle, then I and probably many others would take some comfort. But alas - not many are very positive at all and many are outright scathing of this particular drug. Its a bit of a minefield really. You know you have to walk through it but you don't want to be the one that person who steps on the mine!!
When Lupron was approved for adjuvant ADT, hundreds of patients provided their real life experiences. Why do you only believe these few? People write on forums like this one are not a good indicator of the average response. People usually post on a forum if they've had bad experiences.
Why do you think any of it applies to adjuvant ADT vs permanent ADT?
Thanks for your reply, it does make sense and does give me some encouragement to man up and give it a go!! I hope to be one of those who can take it all in their stride. Thanks again 😊
I resisted ADT for at least 8 months before my HDR-BT treatment.
I seemed to be ok at the moment. After learning more from the good people here and at MSKC I feel that was a very bad choice. What I possibly risked by delaying treatment scares me to this day. My reason for delaying was loss of libido. What a foolish reason to delay treatment for a life threatening disease. What I believe now is to attack cancer with all the weapons I can as early as I can.
Like reviews of anything….people are inclined to report the negative over the positive…particularly when you consider that this is an advanced PC forum……I spent a long while avoiding ADT and it wasn’t until my pcma that I had to man up and use it( prior CT scans and bone scans had been negative but psa kept rising)……Do not assume that you will get all the possible side effects that are reported here…..I am 5 months in with no side effects beyond a little sweating at night and moderate weight gain…..my sexual desires had quieted enough at age 72 that I have not found the additive effects of ADT particularly troubling…….in a word,there are usually more more reasons to use these drugs than not. BTW I am on eligard along with abiraterone and prednisone…..yes I might get other side effects as time goes on…..but keep in mind that the cancer itself brings a whole host of side effects along with it….most worse than ADT.
My husband has been on Elligard for 4 years prior to his RT; will decrease frequency to 6 month shots, only takes 1 Zytiga; doesn’t seem to have any serious symptoms; typical things, a little brain fog, fatigue, achey joints, no hot flashes, psa undetectable now for 10 months, RO is certain he got a curative dose of Radiation, wants him to stop all ADT; see if T comes back. Casodex was a breeze for him, just an FYI from someone who had good experiences with ADT
Yahoooooo. at last, someone has given me some confidence that not all is doom and gloom with ADT and particularly Eligard. Thank you so much for sharing this info. Tall Al, you are correct, - We must try our best (as hard as it is) to stop honing in on all the negative comments about ADT and realize that maybe for every 1 bad experience that we read, there may be 10 that cope quite ok.
Thanks again for sharing Keeper70 and all the best for your hubby.
Thank you and good luck to you as well. There is a tremendous benefit and value in following this forum as it had led us to the knowledge and empowering strength to seek out the best information available on the internet.
Hi, I remember thinking as I took my first Bicalutamide tablet prior to starting Zoladex that it was all a death march from here on. That was six years ago.
I still heliski, spend a month hiking in Italy and do reformer Pilates every morning .
In short, I can maintain a body that supports a lifestyle that I never imagined having in my 70's, regardless of PCa.
Side effects exist and hot flushes/sweats are the bane of my sleep time, but muscle and bone health can be maintained through exercise.
If it was a stroke, aneurism etc your lot, if any, would be way worse. View this point in time as the start of your next life and embrace the opportunities it offers.
I soooooooooo hope that this will be me - except for the heli-skiing - again another great positive story. The more I hear these the less I'm panicking!!
Remember that the point of all of this is to stop the cancer by eliminating your testosterone. I believe the side effects come from the lack of testosterone, not from the drug itself, so if biclutamide is successful in suppressing your testosterone you will have the same lack of testosterone side effects as if you took Eligard.
(I'm almost 9 years into this and still skiing, but not the heli kind)
My husband Gleason 7=4+3 and PSA 10.4, with very bad Decipher score of 89! had a similar timeline to yours. Diagnosedin late April, biopsy in June, redults in July, meeting with various 1st, 2nd, 3rd opinions in August. He was going to get a 3-month shot of Lupron, but after I did some research I convinced him to do the 1-month, which seems to have fewer side effects. He had none.
Second month he had another 1-nobth Lupron shot, no side effects.
3rd and 4th month he was on oral Orgovyx. He loved it (as much as one can live ADT). A little bit of fatigue, some loss of libido, and a couple of "feeling funny", not like himself. No hot flashes or headaches, just kind of blah.
At the same time (end of month 3) he had begun RT and was not feeling much difference - yet.
Into month 4 and still not many changes, except fatigue and some loss of memory, more like mental fuzziness. Again,could've been RT.
At month 5 his Orgovyx was cancelled and he went back on 1-month Lupron. His biggest complaints were constant fatigue (he did not keep active!) but we knew at this point it was the RT kicking in.
Then RT ended and came the final ADT shot - a different doctor gave him Eligard. It was a 1-month shot, also. Biggest side effect was a very sore hip for a few days.
We actually saw the RT effects after treatment ended this mid-December. He returned home (he had the treatment done out of town) and he was a space case for the holidays. We went to a couple of daytime parties for New Year's Eve, and he fell asleep, sitting up. That was the worst off it. Now, a month later and with all? of the ADT out of his system, he seems to be slowly getting back to his normal self. He's going for walks again and sometimes goes to my yoga class with me. His memory is definitely improving.
Side effect folklore is always skewed towards negative, as has been noted.
Testosterone suppression will produce side effects regardless of the drug. Yes bicalutamide sides are milder, but Lupron, Eligard, Firmagon etc are mild too in the short term. Unique problems with bicalutimide monotherapy come eventually.
What you need to consider is ways to minimize the sides that aren’t rooted in the delivery system. T suppression wastes muscles, no matter the drug. It also exacerbates any co morbidities you may have, but even if you have none you need to improve your health and watch your numbers.
You have heard/read about all the side effects by now. Fatigue brings the most complaints. Blood sugar may well rise; insulin resistance is a threat. Metabolism slows, fat gain is likely unless caloric restriction is implemented. Depression and cognitive impairment are possible. Hot flashes are common.
Your overall health, and especially your strength and cardiovascular fitness, can lessen or worsen every one of these side affects far more than all other factors combined. Certainly far more than which drug you take.
Included in ADT folklore is the myth that severity of side effects are random. They are not. Mitigating or even eliminating them are the one thing within your control.
If your exercise habits are good-including weight lifting- you should have no problem. Do more. If not, start now. ADT without intervention accelerates aging dramatically and swiftly. Don’t let it happen. Great luck to you!
Wow. Great answer and great advice. It seems like it’s all about having the right mindset going into this phase of our life. For all those who are naturally fitness gurus - great!! - for all others, time to get with the program or suffer.
My understanding is that the primary benefit from ADT comes from time after RT. I have heard that some men need to shrink their prostate prior to treatment so they are on ADT for several months before as well. You might ask your RO if you can just defer starting ADT until the end of May. As others have said, exercise, particularly resistance and weight bearing will mitigate ADT side effects.
Also you might inquire about Orgovyx instead of Eligard. It starts faster, T recovery after treatment is over is much faster, and it has fewer cardiac side effects. However it can be much more expensive (depending on insurance) and requires strict compliance - it is a daily pill and you must not miss a dose.
I am a Gleason 9. I had 8 months of lupron prior to RT. I am now in month 17 of 24. Some people it affects more. I find it to be tolerable. For me, more days don't suck than do.
When I was put on ADT in 2015, Bicalutamide had been on the market for about 5 years, but was, at that point, deemed significantly inferior to Eligard. That seems to have changed in the intervening years.
That's good news, because the SEs are, indeed, far more tolerable. I did Eligard for 12 months into a 24-month sentence, but I quit because I was so miserable I could no longer function as a human being.
I'll put it plain and simple, if I had been told about Lupron SE's, I would not have taken it. Reading posts like this leave me with more and more guilty feelings. My side effects are on because I am lazy, I don't want to go to the gym. I do not eat healthy, I do not do enough to take care of myself. In other words I deserve to suffer side effects. NOT SO. I am so tired of the rhetoric, I am so tired (pun intended) of being blamed. By the way, I notice that most of my posts are deleted here. Is it because I don't fit?
Don't believe anyone, including the doc, about the side effects. Yours will be different, guaranteed. The only issue is that Lupron/Eligard take a while to "turn on" and also take a while to turn back off. If you have severe side effects, even if you stop the injections, it can take ~90 days for the medication to wear off.
HOWEVER, side effects aren't always brutal. Give yourself the best chance to live the longest with the least effects from the cancer. Best of luck.
I was on Casodex for 2 years. Side effects zip nothing. PSA 54 at start Mets to 3 location. After 2 years PSA 2.5 . Two locations nothing on MRI. L5 asleep. Did SBRT and IMRT. Off Casodex now for 3 months. Did lab last week will get results Thursday.
You can stay on bicalutamide (50mg) and combine it with dutasteride (1mg/day) on an ongoing basis without Lupron/Eligrd or similar. This approach is called "peripheral androgen blockade" and it is a recognized acceptable alternative to standard ADT. It can work for quite a long time for some before mutations inevitably make it fail and PSA starts rising. It worked for 4.5 years for me. You still have circulating testosterone so the side effects profile is much better for most. If 50mg is effective then you don't need to take 150mg.
The problem with worrying about side effects is that you then will more likely get that side effect. There are studies on attitude and outcome. Most cover Positive attitude giving positive results but there are some that cover negative attitude and results. Ask for the side effects by percentage reported. Do not focus on negative focus on Positive. It does work.
Bicalutamide was also previously used as monotherapy to treat localized prostate cancer (LPC), but authorization for this use was withdrawn following unfavorable trial findings.” - Wikipedia
Ty reacher...in my case i was 6'4 and bulletproof ..i wasnt into working out as i swung a 22 oz hammer most days...they gave me casodex prior to staging pc...and after 2 day i had what felt like the worst flu of my life...its been all down hill since then physically.....this group was dif. 7yrs ago....soc was different....and only a cat named nalkrat( sp? ) and a few others preached excercise...but live and learn.....now i' d lift some, walk some, ...stroke me pecker EVRY DAY.....but i havent stopped living..i just settle for a little less quality...and dont spend much time infront of a mirror....good health to ya..ya look good..bwP.s...attitude is the key to beating apc..
I’ll weigh in too. Been on Eligard for 3 years. Other than hot flashes and night sweats I never noticed much initially or even 3 years down the road. I didn’t get the fatigue because I kept exercising and no weight gain because I watch that closely. There are effects, but nothing that made me even consider stopping. Having said that we are all different.
Talk to the ones wearing the white coats......... they need the money to pay for dry cleaning those coats.
Please would you update your H.U. bio.........all info voluntary but it helps us help you and helps us too. Thank you.
Good Luck, Good Health and Good Humor.
j-o-h-n
Thank you to everyone above who responded to my question. I am overwhelmed by so many of you taking the time to reply.
The answers received range from "I'll never take ADT again, my life is ruined TO - SE's were ok, not to bad quite tolerable". So I'm going to give this walk a go and see what happens.
Thanks again everyone and all the best to you all.
You and I are almost identical across the board. My experience with ADT was not so bad. The lower your testosterone is before ADT it makes it an easier crash with less side effects. I had a Prostatectomy, Chemo, ADT, Bicalutamide, and radiation. Metastasis to the local lymph nodes then up to farther ones. To me the worst thing from a side effect standpoint was radiation causing hematuria, bladder blood clots, fistula, and leakage in both places. Prostatectomy caused ED, and mild incontinence.
TA has great replies. I strongly suggest that you ask your pharmacist or doctor for the side effects and percentage that reported them. The ones you are worried about, other than hot flushes, libedo and energy, are low %.
Tall Allen has stated his treatments for libido and energy. They work if you work at it! Hot flushes and night sweats are the same thing and there are treatments if you must treat. I didn't and many do not. You get by. My case after 4 years of Lupron no hot flushes any more.
We all recognize the power of positive thinking helping but the reverse can be said about negative thinking. Anticipating bad side effects can make them happen some times.
What we expect to happen can shape what actually does happen.
Expectations can be about something beneficial or something bad.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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