Do ALL men get side effects from Lupron shots?

Posted by firespooks @firespooks, Nov 26, 2023

Do ALL men get side effects from getting Lupron shots.?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I think in 2022 there was a webinar where Kwon indicated that of the 44,000 PC patients, there were 2,200 unique treatment paths. The professionals are keenly aware that an over abundance of treatment paths creates a trying landscape, so in many ways we are all travelling on a path that is optimized for our situation, education, and outlook. We are in this together, that is for sure!

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@philipsnowdon

Hello,
Like most patients with Prostate Cancer, their experiences in both treatment and recovery can vary dramatically. The surgical versus the radiation treatments are as different in scope and utilization as they can be along with everything else associated with the aftermath of each.
First and foremost, there are absolutely NO GUARANTEES when it comes to treating PC and or continuing to be in remission. Anybody or physician who tells you differently is simply misinformed!
As for LUPRON and other similar therapies etc, there are NO GUARANTEES that your cancer won’t come back. This is a fact backed up by the evidence from patients who utilized “ADT,” ANDROGEN DEPRAVATION THERAPY with radiation and their cancer returned. Logically, it makes sense to lessen the possibility of your cancer returning if you can reduce the amount of Testosterone in your body. Pretty much everybody is in agreement that once you have PC, increasing the Testosterone in your body through “TRT,” TESTOSTERONE REPLACEMENT THERAPY will feed your cancer cells and promote the growth of your cancer. Hence, any patient on “TRT” who contracts PC will almost universally discontinue his “TRT” immediately. However, once he is successfully treated with no more detectable cancer and his PSA levels are also undetectable there are no more cancer cells to feed. Of course, nobody can guarantee that every cancer cell in your body has been removed even though no more cancer cells are detectable resulting from the surgical or radiological treatment options.
The thinking regarding TESTOSTERONE and PC has changed dramatically in recent years. Physicians are now prescribing Testosterone to PC patients after their initial recovery to assist them with a better and more full recovery by utilizing the appropriate amounts of Testosterone.
FACT: Every man needs to have a certain level of “T” in their bodies to maintain overall good health and well-being, maintain muscle mass and bone density, reduce depression and maintain their libido.
Of course LUPRON, does the opposite of everything discussed above.
Like most things regarding PC, patients make their personal choices on treatment and recovery options based upon a number of factors in their current life when considering their overall health and wellbeing in addition to assessing their risk attitudes and personal preferences.
Without going into great detail, I had been on “TRT” for 11 years before contracting PC. Due to prior health challenges, discontinuing “TRT” and pursuing radiation with LUPRON was never going to be a viable option for me.
I had my Radical Prostatectomy 13 months ago and started my “TRT” again 5 months after my surgery. My PSA continues to be undetectable at < 0.014, (taken the day of my surgery) and has not changed as of today.
Personally, my overall health and wellbeing would absolutely plummet if I were participating in “ADT!”
and be a total disaster.
Of course, I monitor my PSA on a monthly basis and continue to do so along with my other blood tests every 2-3 months. The other reason I chose the surgery first option is that it provides me the radiation option later should my cancer ever return which is not available the other way around. They just don’t perform surgery after radiation treatments in PC patients. (It’s done but very rarely and reluctantly)!
So, in the end, every patient must do what they need to do if their cancer returns. If this happens to me, I will assess my options at that time and go forward with treatment.
There is no right or wrong answer when it comes to utilizing LUPRON or not! However, there is always your own best, personal choice.
Best wishes and good luck to all of my fellow PC Patients,
GODSPEED

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So as not to give people the wrong impression, salvage surgery is done after a failure with photon or proton radiation. Your urologist may not do it but there are urologist that do. My physician told me after I returned from my two months of proton beam therapy that all looked well and psa will be monitored after the ADT therapy is finished and if there is a recurrence he can do the surgery if I choose to do it.

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@northshorepaul

So as not to give people the wrong impression, salvage surgery is done after a failure with photon or proton radiation. Your urologist may not do it but there are urologist that do. My physician told me after I returned from my two months of proton beam therapy that all looked well and psa will be monitored after the ADT therapy is finished and if there is a recurrence he can do the surgery if I choose to do it.

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Hello northshorepaul,
You are correct in your statement and or clarification to my previous comments regarding the option for salvage surgery following radiation and the return of Prostate Cancer to a patient. To further clarify……..Salvage Surgery is not a very high percentage option and the majority of surgeons do not do it based on the past experiences and outcomes of patients who
have utilized it. Again, surgery or radiation as your initial treatment is and remains a very personal choice. The surgery first option creates most of the incontinence and ED issues experienced by most patients immediately following the procedure. These symptoms come more slowly but do manifest for patients who choose the radiation option first as well. However, they generally manifest and progress more slowly over time. Obviously, any final decision is determined on a case by case basis. As I stated previously, there is NO best option for any Prostate Cancer patient. There is only the BEST option for them based upon their evaluations in the decision process.
The statistics I’ve read, researched and studied point out the fact that salvage surgery comes with certain risks based upon all of the dead tissue caused by previous radiation. Surgeons in general don’t like to perform salvage surgery on the dead tissue caused by the previous radiation and the further complications that the surgery can cause in the post surgical recovery stage. Again, this is a choice and option that the patient and their surgeon make together. I would never tell or recommend to any patient that they shouldn’t consider it or choose it. However, I would advise them to do sufficient enough research to evaluate the risks and outcomes associated with it.
Obviously, like all the choices and considerations made by any Prostate Cancer Patient whichever initial treatment you choose affects whatever your available secondary options may be if you need to make one if your cancer returns. In addition, there is always the personal option not to do anything at all.
All medically related decisions are made as a matter of personal choice along with the recommendations made by their surgeon or radiologist.
It’s been my experience that either surgery or radiation emerges as the best choice for a patient after considering all of the facts in their case and the degree and seriousness of their cancer when it’s first diagnosed. Some patients don’t have as many options if their stage of cancer is more serious and has spread outside of their Prostate into their nodes and other surrounding tissue. From a personal perspective, I made the surgical option primarily because all of my cancer was still limited to my Prostate. I also preferred to have all of my detectable cancer removed if possible which thankfully, it was.
It also provides me the secondary option of radiation if my cancer returns. Again, I made my personal choice based upon the facts involved in my specific case in addition to my own personal risk assessments.
At best, all of us can hope that our cancer remains in remission so we don’t have to make any kind of secondary options.
I send my best wishes to you in your journey and to all of our fellow Prostate Cancer Patients for the best outcome possible, (living the rest of your life with your cancer in remission).
GODSPEED

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Hello Al,
Thanks for your reply to my previous comments and post. Indeed, all of us as PC Patients are on our own journeys. We are also a community of patients dealing with PC the best we can along with the expertise and experience of the various treatment protocols we pursue with the aid of all the physicians and specialists who treat us.
Just a little background on myself and the past 30+ years of personally experiencing serious disabilities resulting from CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
You’re exactly correct about my passion for facts and straight forward information. If I come off a “bit too strong” and or appear to be “too aggressive” in my comments and assertions etc. A lot of that has come from my experience of dealing with the above maladies.
There has been so much mis information, disinformation horriffic assertons and assumptions along with excessive doubt and disbelief that these serious illnesses were not even considered as legitimate disease states until about 10-15 years ago. Give or take 5 years on either side of those time periods depending upon which disease and aspects related to them one is discussing. Partly because CFS and FIBROMYALGIA share a lot of the same characteristics and symptoms. Without question, my personal experience along with my fellow patients have been instrumental in shaping my zealous nature for the facts.
When patients like myself were simply dismissed as “psychologically impaired” and everything we were experiencing was “just in our heads” and we didn’t really have any legitimate medical problems etc. That will have and has had a tremendous influence on me personally as well as the community of patients who’ve experienced much of the same “illegitimacy” and “personal dismissal” etc, As you can imagine, this lack of compassion along with no standard methods of diagnosis, causes for these diseases and or effective treatment options for a recovery will in fact…….get one pretty fired up!
Now that 30+ years of studying and researching these diseases have finally determined and recognized their legitimacy and have been accepted by the majority of the informed medical community etc. Everything associated with them are viewed in a much different light!
The exception being CHIARI MALFORMATION which wasn’t so much dismissed as it was more in its infant stages of understanding and available treatment options.
I am still and remain seriously debilitated from these disease states.
Ironically, when I got my PC diagnosis, I was and remain much more relived about it because there is a lot of history and experience in the diagnoses and treatments for it.
Of course, nobody wants to get a cancer diagnosis or go through all of the treatment options for it. However, as a patient, you are never doubted that you have the disease or dismissed as a person for contracting your PC.
Thankfully, after my Radical Prostatectomy in October of 2022. I am still in remission and my PSA has remained at < 0.014 since my surgery date up through and to today.
When other PC Patients on this website, (all at different stages in their disease and experience), ask a question which I feel I can be of some assistance or benefit to them by responding to their concerns through my own experiences. I will certainly do the best I can to empathize and inform them based upon my knowledge and or experiences about it.
As you so eloquently described in your comments, I don’t hold myself out to be an expert about anything related to PC. However, I have taken the time and made the commitment, (I still do), to be as informed and educated about it as much as I can.
I’ve learned a lot by reading the comments and posts made on this website by our fellow PC Patients through their experiences and knowledge. I love the fact that all of us in our hearts and minds are just trying to be of service and assistance to anybody we can whenever and wherever we hopefully have something of value to offer.
Thank you again for your comments and insights.
I wish you and all of our “brothers in PC arms” the very best in their personal journeys for the best quality and quantity of life we can all hope for.
Kindest regards always,
Phil

REPLY
@philipsnowdon

Hello Al,
Thanks for your reply to my previous comments and post. Indeed, all of us as PC Patients are on our own journeys. We are also a community of patients dealing with PC the best we can along with the expertise and experience of the various treatment protocols we pursue with the aid of all the physicians and specialists who treat us.
Just a little background on myself and the past 30+ years of personally experiencing serious disabilities resulting from CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
You’re exactly correct about my passion for facts and straight forward information. If I come off a “bit too strong” and or appear to be “too aggressive” in my comments and assertions etc. A lot of that has come from my experience of dealing with the above maladies.
There has been so much mis information, disinformation horriffic assertons and assumptions along with excessive doubt and disbelief that these serious illnesses were not even considered as legitimate disease states until about 10-15 years ago. Give or take 5 years on either side of those time periods depending upon which disease and aspects related to them one is discussing. Partly because CFS and FIBROMYALGIA share a lot of the same characteristics and symptoms. Without question, my personal experience along with my fellow patients have been instrumental in shaping my zealous nature for the facts.
When patients like myself were simply dismissed as “psychologically impaired” and everything we were experiencing was “just in our heads” and we didn’t really have any legitimate medical problems etc. That will have and has had a tremendous influence on me personally as well as the community of patients who’ve experienced much of the same “illegitimacy” and “personal dismissal” etc, As you can imagine, this lack of compassion along with no standard methods of diagnosis, causes for these diseases and or effective treatment options for a recovery will in fact…….get one pretty fired up!
Now that 30+ years of studying and researching these diseases have finally determined and recognized their legitimacy and have been accepted by the majority of the informed medical community etc. Everything associated with them are viewed in a much different light!
The exception being CHIARI MALFORMATION which wasn’t so much dismissed as it was more in its infant stages of understanding and available treatment options.
I am still and remain seriously debilitated from these disease states.
Ironically, when I got my PC diagnosis, I was and remain much more relived about it because there is a lot of history and experience in the diagnoses and treatments for it.
Of course, nobody wants to get a cancer diagnosis or go through all of the treatment options for it. However, as a patient, you are never doubted that you have the disease or dismissed as a person for contracting your PC.
Thankfully, after my Radical Prostatectomy in October of 2022. I am still in remission and my PSA has remained at < 0.014 since my surgery date up through and to today.
When other PC Patients on this website, (all at different stages in their disease and experience), ask a question which I feel I can be of some assistance or benefit to them by responding to their concerns through my own experiences. I will certainly do the best I can to empathize and inform them based upon my knowledge and or experiences about it.
As you so eloquently described in your comments, I don’t hold myself out to be an expert about anything related to PC. However, I have taken the time and made the commitment, (I still do), to be as informed and educated about it as much as I can.
I’ve learned a lot by reading the comments and posts made on this website by our fellow PC Patients through their experiences and knowledge. I love the fact that all of us in our hearts and minds are just trying to be of service and assistance to anybody we can whenever and wherever we hopefully have something of value to offer.
Thank you again for your comments and insights.
I wish you and all of our “brothers in PC arms” the very best in their personal journeys for the best quality and quantity of life we can all hope for.
Kindest regards always,
Phil

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Good afternoon Phil. Seems like we're becoming great friends fast! (Smile). Yes Phil thank you for acknowledging that we're all are on our own journeys, and we use this platform to engage with one another, and share and get insight from each other. I'm greatful for this community. Just knowing that I'm not out here all by myself, and I have a (Band of Brothers), that care and at times helps me through my day. Because as you know having PC, can be mentally, and emotionally overwhelming at times, constantly thinking of your PSA numbers, your other treatment options etc.....Oh by yhe way congratulations on your numbers being < 0.014 since October 2022. That wonderful man. I also want to say thanks for sharing some background on yourself, 30+. Phil sincerely I'm humbled. I respectfully and truly see where your passion comes from. It must have been very frustrating and difficult dealing with the misinformation, disinformation, assertions, and assumptions that professionals weren't even acknowledging those were not considered legitimate diseases 10-15 years ago. That's crazy!! Phil I implore you to keep up your zealous nature for the facts. Phil I'm quickly realizing your a wealth of knowledge, and a student of wisdom, knowledge, and understanding! You have a ("Beautiful mind"), and who I'm I to tell you anything contrary to your teaching nature! Please keep up the commitment and self education, because this community needs your voice, and input. Phil it's refreshing conversing with you, because I to like yourself, seek knowledge, wisdom, and understanding. I study, and do my homework on most topics that involve my life, and life it self for that matter. Phil I must say that PC, gas thrown me for a loop at times, because of the many variables, treatment plans, fluctuating PSA numbers, mental and emotional battles, doctors appointments, ie oncologist v.s urologist v.s hematologist side effects
etc.... just a lot of moving parts! So Phil it is refreshing to hear your fact based views, opinions. Please continue your commitment to excellence, snd in service to this community, we're greatful to have you as one of our ("Brothers in PC arms") PC ("Band of Brothers") Phil I hope to talk to you soon or contact you on this site directly? I'll have to try to figure out how to do that?? (Smile)! Wishing you the best in your journey as well, and to the whole PC community. My best regards my friend Phil. Your Buddy Al

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Hi Al,
Thank you much for your support and personal appreciation of my intentions to serve our fellow PC Patients in every way possible. You may feel few to contact me through my email address.
(sagehawkmz@aol.com)
Even though I’ve never met or personally spoken to any of the people on the MAYO website, I consider all of them to be friends and comrades.
Please feel free to contact me through my above email address. I also extend that invitation to anybody on the MAYO website to share a “one on one” conversation with me if interested.
Thanks again for your warm embrace and feelings of friendship.
I certainly share those sediments with you as well.
In friendship, hope and well-being.
Your friend,
Phil.

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@philipsnowdon

Hi Al,
Thank you much for your support and personal appreciation of my intentions to serve our fellow PC Patients in every way possible. You may feel few to contact me through my email address.
(sagehawkmz@aol.com)
Even though I’ve never met or personally spoken to any of the people on the MAYO website, I consider all of them to be friends and comrades.
Please feel free to contact me through my above email address. I also extend that invitation to anybody on the MAYO website to share a “one on one” conversation with me if interested.
Thanks again for your warm embrace and feelings of friendship.
I certainly share those sediments with you as well.
In friendship, hope and well-being.
Your friend,
Phil.

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Hello my friend. Phil I just want to say thanks for the invite to converse on our email address, I truly appreciate it. You have proven to be a real stand up guy, and a already a pillar in our MAYO community. It would be nice to converse via email sometimes, so we're not always in the vain/thread of the original post. Because I do have some questions that are more direct. And personalized that are not always on topic with our MAYO post or conversations. I do study, and research myself but still it doesn't have that personal touch or confirmation as it where. Also as you know the urologist-oncologist-hematologist aren't always going you unconditional facts, to the extent, to always instill hope in you, which I understand, they don't want to give you that gut punch, or box themselves into guarantees, or the obligation of meeting all of the PC patients expectations etc..... So that said I'll still connect/converse with you over this MAYO Site, But I'm going to send you a test run to your email address, and lock it in on my phone/laptop email address, and uou can lock mine in as well. Sincerely Al

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@al2

Hello my friend. Phil I just want to say thanks for the invite to converse on our email address, I truly appreciate it. You have proven to be a real stand up guy, and a already a pillar in our MAYO community. It would be nice to converse via email sometimes, so we're not always in the vain/thread of the original post. Because I do have some questions that are more direct. And personalized that are not always on topic with our MAYO post or conversations. I do study, and research myself but still it doesn't have that personal touch or confirmation as it where. Also as you know the urologist-oncologist-hematologist aren't always going you unconditional facts, to the extent, to always instill hope in you, which I understand, they don't want to give you that gut punch, or box themselves into guarantees, or the obligation of meeting all of the PC patients expectations etc..... So that said I'll still connect/converse with you over this MAYO Site, But I'm going to send you a test run to your email address, and lock it in on my phone/laptop email address, and uou can lock mine in as well. Sincerely Al

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Great Al,
I look forward to corresponding with you directly when appropriate for a more personal and confidential conversation.
Talk to you soon,
Phil

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