I am resistant of the Lupron treatment my Doc is going to propose next week. Am i wrong to be concerned? Is it no big deal? I just dont want people messing w my hormones. How big a risk am i taking, if i dont do it?
Lupron: I am resistant of the Lupron... - Advanced Prostate...
Lupron
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AcousticEagle
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Are you high risk? Probably increases your chance of a cure by about 50%
But you've said in the past there is no cure for prostate cancer. Lupron is a treatment nothing more.
There is currently no cure for metastatic prostate cancer. Localized prostate cancer can be cured.
• in reply toTall_Allen
Until its no longer localized.😉
PET revealed no cancer elsewhere, ONLY in Prostate and near lymph nodes (base of skull to mid-thigh). G9. PSA28.6 down from 34.2 (with no treatments yet - confusing). Prostate biopsy (13 samples) oddly came back negative (clean) which delayed me starting treatment. Sounds like people have a variety of responses to Lupron. Sounds like it's a needed tool and I need to suck it up and try. Sounds like, at 57, I have a longer fight to prepare for than some which is why I'm trying to decide "how much how fast". Also been through UC and my wife's lung cancer. Doc wanted me started on it yesterday. Told him I wanted to talk to somebody first. Friend recommended this site which has been helpful for feedback (even if conflicting at time, all part of the process). Already working at the fitness and training aspects.
How can "Prostate biopsy (13 samples) oddly came back negative (clean) "? Just before that you wrote that it is "G9" The only way to know a Gleason score is with a positive biopsy.
G9 is from a follow-on lymph node biopsy
After having Gleason 3+4 biopsy at age 54, I've used every available tool in the toolbag and am very glad I took that approach. It's a life long battle for quantity and quality of life.
Your right it is different for everybody. The only way to know is to start it. I was diagnosed at 56 and felt the same way you did. Was on it for 2 years, off it a 1.5 yrs and back on it now. I personally haven't had some of the more common "bad" side effects like fatique, brain fog, or hot flashes but did have shrinking junk and loss of body hair. Worked hard to keep weight off the first time and lost 40 pounds on it. Working to lose a few pounds this time and is working so far but I may just be lucky that way. Staying active is very important, universally agreed on, because the drugs giveth and taketh away.
Yet you say "There is currently no cure for metastatic prostate cancer..."? Am I misreading what I see as conflicting statements?
The OP is not metastatic.
Sorry, what is "OP"?
OP=original poster
Thanks. How do we know his is not metastatic?
Because he wrote "PET revealed no cancer elsewhere, ONLY in Prostate and near lymph nodes (base of skull to mid-thigh)"
Yet there could be metastases too small for the scan to pick up?
Therapies are based on what has been detected, not what "could be."
Not always. I had Taxotere and radiation of lymph nodes without any visible tumors. I'm currently debating whether to wait to see tumors or have more systemic treatments.
You were treated outside norms based on trials. Taxotere adds little when there are no visible metastases.
prostatecancer.news/2019/02...
I got 4+ years of PSA < 0.01 after Taxotere + radiation (lymph nodes above the local area) + 9 months of Lupron. For me, 5+ years with no ADT is great success. Virtually every doctor I've spoken with says the earlier you get a specific treatment, the better it works.
The problem with relying mostly on studies is that they are funded (read affordable) only for impact on late stages over relatively short time periods. Many treatments may work much better when received in earlier stages. That's what my oncologists have been seeing.
If non-pelvic LNs, then you are Stage M1a (metastatic). Docetaxel only works on rapidly dividing cells. Read the article.
Hi
I was faced with the same issue 5.5 years ago. Lupron had ceased working and my PSA was climbing; I entered the realm of “castration resistance “ (G-d I HATE that term!). I was at a crossroads. I figured it was a good time to stop any more treatment and I stated that in this group. I was met with discouraging comments regarding painful metastasis to my bones. So, I decided to keep on fighting. I was on Erleada for close to 5 years until new side effects made me stop taking that drug.
To be honest, the whole time you have been on Lupron your hormones were being messed with. Did you ever experience hot flashes, night sweats and/or changes to your emotional state? Another med won’t change that fact. Keep on fighting my brother. Don’t give up. You are relatively a novice here compared to others. And very important, if you don’t like what the doctor says or suggests, seek a second opinion. If you don’t like the doctor, find another one. Please update us on your progress.
I think the OP is saying that he is personally resistant to the idea of ADT. He’s never been on Lupron, not castrate resistant.
As for the original question, you have to think about what living is worth to you . ADT is the start of a journey that has prolonged the lives of most of us in this forum
@MJCA Sorry, but I am a little confused with your answer. So, are you on ADT now or not? And which one if you are. Thanks.
Yes, over the 17+ years I have had this mother, I have been on Lupron 4-5 separate times. This round, I have been on Lupron > 5 years and expect to ALWAYS be on it.
Think very very carefully about what you're suggesting , there are serious repercussions . Yes there are side effects from Lupron, but there are also benefits. Basically is a trade off, prolong your life on one hand and side effects on the other. I did two years on Lupron and about 31 days on EBRT, I won't say it was easy. Would I do it again for the benefits? Yes if i had to. Best wishes.
Here's my take, if you are a member of this forum then your PCa is advanced, maybe high risk, stage 4. That is a hand grenade inside you with the pin pulled. Dally and worry about side effects but its the *bang* that seems to me to overwhelm such considerations, and the exponential growth and spread of PCa tumors means time is of the *essence*. You are in free fall in a dense fog and thinking about the side effects of whether or not to open your parachute. ADT is the parachute, not guaranteed to cure anything, but odds are very high it buys you time to think about options should your PCa one day resume metatasizing. Good luck all my fellow PCa rocket-men!
Lupron did mess with your hormones. Other ADT drugs will continue the fight.
I agree with Teleguy: "I think the OP is saying that he is personally resistant to the idea of ADT. He’s never been on Lupron, not castrate resistant. "
If you avoid Lupron with radiation you run a high risk of recurrence. And recurrence after radiation is difficult to treat - except starting with life-long Lupron then. Lupron has shown to work in synergy with radiation and you should do it as your doctor recommends.
I’m a 60 YO G9 localized just started radiation. Been on ADT for 9 weeks. I don’t love it but if it helps with the cure and I can get back to my normal life in 22 months it’s a no brainer
My oncologist says he is seeing far less severe side effects with relugolix with the same effectiveness as Lupron.
medlineplus.gov/druginfo/me...
yes, that’s true but Relugolix oral is not always accepted by insurance when you still have Degarelix shot.
I tried relugolix and it did little to pull my testosterone down for nearly 5 weeks. Not everyone responds to a medication the same. Always worth a try, keep tabs with your urologist and oncologist. My oncologist has several patients relugolix did not provide enough effectiveness. I moved to a 1 month Firmagon shot, now on 6 month Lupron shot. An occasional hot flash is about all I deal with, a bit of fatigue cured with exercise.
Thank you all for your comments. I have not started anything yet. Sorry, I shouldn't have used "resistent" to describe my feelings.
Going to Radiation Onc Wednesday for first time. PSA 28.6. Lymph nodes in play. Gleanson=9. I'm just getting through the shock of it and reading all kinds of stuff. Hard to know what applies and what doesn't.
I appreciate the direct words Derf4223
Tall_Allen 50%, wow!
I'm hearing you guys.
AcousticEagle wrote -- " Thank you all for your comments. I have not started anything yet. Sorry, I shouldn't have used "resistent" to describe my feelings ... "
Nothing to be sorry about!!! 8 years ago this week was my diagnosis. I too was resistant to taking ADT DRUGS so instead I had an Orchiectomy.
AcousticEagle also wrote -- " ... I just dont want people messing w my hormones... "
It's not people messing with one's hormones BUT instead it's the DRUGS. I did not want the DRUGS in my body so instead had the offending body parts removed. ALSO, instead of proceeding with SOC treatment I chose to be an EXPERIMENT at the time. I was the FIRST to be offered my Dr.'s experimental immuno injection following Cryotherapy for my GL10 and then had Testosterone Injections begin 1 month later.
My suggestion is to research and proceed with treatment based on the information you gather for your diagnosis. Many will respond with helpful information BUT remember that your diagnosis is not theirs and your Genes are not theirs.
As you have a Gleason 9, you really have to get ADT for 18 or 24 months after radiation. Otherwise the radiation will probably be not successful. The synergy effect is directly following radiation, you cannot say: I will think about it. Then you missed the chance.
> 'Lymph nodes in play. Gleanson=9.'
Gah, both of those say you need to do everything in your power to get it slowed down! I've been on Lupron-D for years, yes, it has some effects you will feel, but these are nothing like how you will feel with fully developed prostate cancer. You want to do everything you can to slow it down!
If the pelvic lymph nodes are involved you need to do radiation plus 2 years of ADT and abiraterone, based in the STAMPEDE trial.
My regimen. G9, biopsy showed about 35% involvement of prostate, RP only showed 1 lymph node with cancer activity. No treatment after RP for almost 4 years, PSA undetectable. In Nov 2021 PSA starting a slow rise. PSMA scan in Jan 2022 showed 1 small spot in pelvic area. Put on hormone and abiraterone prior to radiation in May and June. Tolerating treatment very well, latest tests all negative, PSA undetectable. Exercise is a large component. Helps ease the possible side effects and lessens cancer spread and growth.
By "resistant" do you mean you don't want it? The side effects really are minimal. Ask the doctor for a list of the side effects and the % reported. You will find that even the most common, hot flushes, is a fairly low % of men reporting it. And the flushes are not that bad.The thing I find is Attitude. A Positive Attitude and choosing to not fear or "have" side effects makes a good difference. Your choice on how to live.
’The side effects really are minimal’
I’m a believer in both in the benefits of ADT and that the side effects can be well managed, but to say that the side effects are ‘minimal’ is a bit misleading.
Hot flashes are extremely common on Lupron. Fatigue is just as common. Sarcopenia is tough on the body, and one’s overall health going in is key. One needs to be ready and willing to counter the strength loss and slowed metabolism that is intrinsic to LHRH drugs like Lupron.
Some caloric restriction should be considered, but of particular importance is exercise habits. Cardiovascular and strength training exercise is the key to minimizing the side effects. Those who have co morbidities, obese or are sedentary and remain so when starting Lupron are much more likely to have a difficult time. Exercising through the fatigue works wonders-simple but not necessarily easy.
In addition, complete or near complete loss of libido is extremely common as well and should be noted.
Again, I feel as strongly as anyone that Lupron-despite the potential challenges of the side effects- is completely worth it due to the positive difference it makes as a part of treatment. But for most the side effects would probably not be described as ‘minimal’.
Finally, the OP is ‘young’ at 57 years old, so the side effects are likely to be more noticeable. Yet his relative youth (especially if he combines it with good strength and fitness habits) will provide a likelihood of indeed making side effects minimal while the drug does its all important work.
I don't know where your case/characteristics would fit within this review of radiation results as a function of ADT duration, but the the results shown in this review may be what was referenced re the 50% improvement in cure rate with extended duration ADT?
ncbi.nlm.nih.gov/pmc/articl...
It is not tHAT A shorter duration of ADT never works. May I suggest that you ask your Doc about the possibility of using estrogen patches at the same time that you are on ADT with Lupron or Eligard or ??? Some are suggesting that it is the lack of estrogen, not Testosterone, that is responsible for the severity of many side effects. Unfortunately, not aware of radiation studies where estrogen patches were used along with Lupron,etc. There is currently the ongoing PATCH trial that you might review for some additional background on use of estrogen patches.
Transdermal E2 is something that you should try. I've been using it for almost 5 years and my PSAs have been undetectable.
No one hates Lupron side effects more than me. MY vote says take it, and not because I want you to suffer. but rather live.
What is your PSA and its doubling time. This is the key concern. If your doubling PSA is low or doubling time long then ADT may not be needed right now. See this...
healthunlocked.com/active-s...
ADT will damage your penile tissue and give your permenant ED; it happens fast. It also suppresses your ability to make your own testosterone after you stop and delays your ability to start back up after you end your treatment. No one told me any of this before I started what would be 21 months of ADT.
Yet, ADT will also save your life and extends BCR for sure. Its a toss up...if I could go back I would delay the use of ADT until I absolutely needed it. Watch out for your ED; you will live longer than you imagine and at some point ED becomes a concern...what you do going forward affects your options in the future. If you need to know more about my background and this issue look it up; I spilled my guts on this forum to help others going down the path I traveled. TNX
“ADT will damage your penile tissue and give you permanent ED.”
Not necessarily. But the maintenance required to prevent it is often neglected. I would have worked harder at this in retrospect.
For me, the fact that I required adjuvant ADT soon after a prostatectomy was the bigger issue. I was faced with rehabbing a shorter, thinner penis that was just barely coming back to life. It was like getting knocked out immediately after taking a standing eight count.
As high risk, radiation with ADT as primary treatment would have clearly been a superior choice for me. Especially for preserving sexual function.
When advising anyone with similar pathology I say “leave the gun, take the cannoli”.
That is, leave the RP, take the ADT.😀
I have been on Lupron for over 7 years...when I read the people screaming about it and saying they would rather die than continue it was concerning. You see, the large percentage of people who do well on Lupron never post, only the cryers. Some hot flashes they come and go....big deal....I lift, paddle board, Peloton Row, and bike, trail bike, golf , eat well, and fly my Husky with my girl Gracie....I was once playing golf with a radiologist friend. He was 14 years older than myself...He looked at me and said...." When I lost my libido I was set free" thought he was crazy.....however now I understand, So Grasshopper, seek exercise, fun , good food and let the Lupron do its work...Blue Skies, Sky King and Penny ( woof) as a side note. Two bouts of Radiation, Proton, SBRT, Xtandi added to Lupron, 5 rounds of Lu-177 India....Gleason 9.....Suck it up brother....!!! Great attitude prevail.....!!!
So you are saying you've been on lupron for over 7 years. May I ask why? Why not just have the prostate removed?
Really???? what does that have to do with it...??? Orchiectomy is what I think you allude too....
I was stage 4 when diagnosed. I already had multiple Mets and n my skeleton. My dog c said it was inoperable at diagnosis. I’ve been taking Lupron/Eligard since 2010. It’s keeping me alive.
12 years AS PSA 54 Mets Spine and lymph node and rib. That was 18 months ago. Started Casodex. 2 months ago newPET scan showed rib and lymph node that there any more. L5 non active. Prostate active. 18months ago Istarted a more off the shelf product. Is it killing my PCa I think so. I've added a natural product that shows the possibility of killing more cells. I have refused Lupron for a more natural approach. Take care
Good point about reduced libido. I know everyone is different on this but for me to no longer be ruled by my sex drive most definitely has its advantages.
Also good point about the dissatisfied having a much bigger megaphone. My wife puts too much stock in online reviews of just about anything. I argued this point with her once to no avail. So reviews often guide (or misguide) us to products, Air B &B’s, services, restaurants etc.
And my life couldn’t be better. As most happily married men will tell you, endeavoring to change your wife is is the ultimate fool’s errand😀
Love this post, Pilot52 😊
• in reply topilot52
People fighting cancer and suffering the side effects of medication are not "cryers" as you would call some of them.
I went with Orgovyx instead of Lupron and glad I did. Also, you can consult with an endocrinologist about hormone imbalance.
I love what pilot 52 had to say. He sums it up just how it is stay active as much as possible and enjoy life while you can. I'm 16 years out been on lupron for two years my psa has been zero.for now the beast is at bay. Good luck.
I was prescribed Lupron, 6month injections. Totally suppressed TestosteroneTriggered my Atrial Fib, which I had not experienced for 10 yrs, but 5 weeks after first injection Atril Fib recurred. After the 3rd injection Atrial Fib became permanent and persistent. I would get other options of options.
I would ask if you could do Orgovyx since it is a newer drug with less side effects and it is a pill which eliminates doctor visits. It also wears off much faster once you stop taking the pill. I've been on it for almost a month and I have no side effects so far. It's more expensive so your doctor may have to fight to get it approved. Good luck.
unfortunately if you want to live a few more years with this disease, they have to reduce your testosterone that feeds the cancer and Lupron and ELIGARD is the only options that seem to work that I’m aware of. I’m on ELIGARD as my cancer has spread to my lymph nodes. Today I do a blood draw to see if is working on keeping my PSA down. Now this was my 2nd shot. Other than minor hot flashes, and some tiredness it’s not a problem for me. As of now I get a shot every six months and that’s it. Your doctor should talk to you about the after effects etc. please be aware that these drugs kill your desire to want much less have sex, everything else about you will be normal once you get accept that .try to maintain a decent exercise plan. A simple 10 -20 minute walk everyday is a great start. I wish you the best of luck in this sad journey . Keep a positive attitude and remember you still have a lot of life in you ,it’s just a new norm.
You can have the cancer, that's your choice. Everyone reacts differently as you can see on this forum. Be a big boy and do it; if you have an adverse reaction, discuss with your doc.
GS9 with two pelvic mets. After Casodex for 4 months, Lupron starting 4 months ago + 20 sessions radiation, Xgeva starting two months ago and Zytiga for one month PSA went fom 11+ to 0.01. It works. Worst symptom is short term memory loss but I'm 82 so could be expected anyway. I can still put in a good half day of work. Can't lift stuff >20lbs because of muscle loss and previous back injury. Do some light weight exercise and can still walk 2 mi in 40 minutes.
BTW I was scared from what I read too, but I did tell my ONC I wanted agressive treatment. Too old for triple ADT with chemo.
Spouse fell into deep depression w Lupron. Finally got a decent MO who insisted on injecting rear end instead of belly. No depression from then on. This is "known" -- just not by mediocre physicians. He didn't get estrogen patch either which we both think he would have benefited from especially as he was asking constantly "what's going on w my estrogen". But Covid etc, he was just grateful to be getting any treatment.
In November I was told I needed to take hormones before my radiation treatments. I freaked out of course. The knowledgeable people on this site said it was definitely in my best interest to take them. I’ve been on hormone therapy since January. Hot flashes and loss of interest in sex are my biggest side effects. My reluctance was the sex issue. After researching and reading through a lot of helpful post on this site I decided the biggest risk would be not taking the therapy.
Good Luck
Thank you! That about how I'm starting to feel.
Yours is a valid question and concern.
None of us can answer that for you. None of us know anything about your PCa, its staqing, its Gleason number and all the other things that allow you to calculate your risk. You are young and your risk from that alone is higher than mine at 79. One of the important purposes of these forums (yeah, I know, the plural of forum is fora) is for you to own your disease. No one else--not even your doctors--can own it for you. Get educated.
That's exactly why I'm here and appreciating everyone's input. You last sentence is one that I live by, having been through other battles.
I’m younger than you and I did 26 months of Lupron + Apalutimide. All in all it wasn’t that bad. The hot flashes and near zero libido were the worst part of it. I listened to the work out advice and I think it helped a lot. I lifted weights and cycled alternating days twice a week and walked 5-6 miles per day. The time passes quickly.
Been on Lupron 2 years. Had RP 5 years ago and 35 radiation treatments 3 years ago. PSA came back again and scan showed a small "possible" met on my Ischium. Side effects for me are a little fatigue, loss/thinning of body hair(chest, legs and armpits) and slight weight gain. While I would like to go off, my research on here and elsewhere tells me I might be taking the water off the fire and letting it rekindle. For me, I am on Lupron for life, or at least until science comes up with something new. Best of luck!
Tough question we all face AE. It prolongs life by slowing the growth of PC. But in the long run it creates the circumstances for its own failure (castrate resistance) in one to five years usually. Two average. And is accompanied by debilitating and discouraging side effects from loss of testosterone. For some this is mild and tolerable, yet for others severe. The only way to assess for yourself is to try it. Short term ADT added to salvage radiation regimens appears beneficial to outcomes and may be more acceptable knowing it is short term.
An alternative to full ADT is to use a “lutamide” androgen receptor blocker as monotherapy without Lupron/Eligard etc. ADT. Side effects are usually milder with this approach as you still have high circulating testosterone. Main SE is breast tenderness and some gynecomastia (which can be prevented with breast irradiation or ongoing Tamoxifen). Bicalutamide has been mostly used for this approach, and more recently Xtandi or Nubeqa. These regimens often also fail after a few years do to mutations, and the drug starts feeding the PC and this approach must be stopped.
It is all a personal evaluation of pros and cons to be discussed with your oncologists. For most of us it is a long road to be navigated. -MB, a fellow traveler
In May 2014 I was diagnosed with Gleason 8, PSA 5.6 age 52. I had surgery in July 2014. After surgery PSA dropped to 0.05 and then started an upward climb. When PSA reached .08 in May of 2015 I had 32 radiation treatments to my prostate bed. My PSA dropped to .06. My MO recommended Hormone Therapy (Lupron) after surgery and again after radiation. Because my numbers were low I declined the hormone treatment and we decided to monitor the progression. I was not ready to give up my QOL in exchange for treatment at that time. I was also concerned about becoming castrate resistant and not qualifying for future treatments or clinical trials on the horizon. Between 2014 and 2022 we monitored the cancer with PSA tests every three months and PSMA scans. In December 2021 my PSA had risen to 3.6. and PSMA scan detected one lesion in my sacrum. In December 2021 I started radiation treatment (22) to sacrum. In January 2022 I caught COVID and completed my radiation treatments in March 2022. Follow up PSA test June 2022 was 10.59. Auxmin scan performed in July 2022 revealed that radiation to sacrum was successful however I now had four bone metastasis to my spine and one my occipital bone. In August 2022 FDA approved the use of NUBEQA, Docetaxel (Chemo) and ADT for metastatic hormone sensitive prostate cancer. In August 2022, I began the Triplet Therapy with NUBEQA, Docetaxel and Lupron. My latest PSA result taken March 2023 is less than .05 and I’m still hormone sensitive. Side effects from ADT for me today are very tolerable. My decision to not start ADT for eight years worked out for me. I chose quality of life and the hope for new treatments instead. Both happened. Whatever decision you make is yours with no regrets. Best wishes
I've been on Lupron now for almost 2 years along with Erleada. So far both PSA/T are undetectable. My concerns about the treatment have faded away as there has been no growth in the mets so far and I work full time with some minor side effects (of course, minor to me, may be a bigger deal to others).
As I understand it, testosterone is the food for prostate cancer. Eliminate the testosterone and you eliminate the ability for prostate cancer to spread. Yes, there are side effects to the Lupron (A.K.A. "testosterone/prostate cancer killer"), but I'll take hot flashes over death from prostate cancer any day. Life and medicine is a series of personal choices. You must evaluate those choices yourself and make decisions accordingly. I wish you the best. Choose wisely!
I've been on Lupron for a year and a half. I had my last shot 4 mo ago. It is a big deal. I have gained 12 lbs and I have lost a lot of ambition but I have maintained 0.01 for 20 months. My Oncologist said now we wait and see. I've started a new diet and bought an e- mountain bike while I am "waiting and seeing".
Notice the Manufacturer of Lupron ended the name with "ON" which means you'll be on it for a long time. Which means you'll be around for a long time. Take it and forget it......
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/27/2023 1:24 PM DST
if you decide to begin adt the best advice i can give is to start low and go slow, For example start the bicalutemide at 50 mg rather than 150 and see how you do and what your labs show regard to progression when starting the lhrh agonist or antagonist start with daily pills if available or a thirty-day injection rather than three months and see what labs and scans tell you and the MO
Have him prescribe Orgovyx, it's an oral medication with better results and less side affects.
ADT can be a bitch, and I hated it, but I hear that dying is even worse. Unfortunately, options for treating PC are fairly limited at this point. We need to support PC research so that future treatments improve. I'd say bite the bullet and live long and be prosperous! Good luck to you! 🦊
I too, recommend Orgovyx as opposed to Lupron. Testosterone AND PSA dropped like stones within 2 weeks and after almost 6 months now, virtually no side effects other than mild hot flashes.
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