Lupron Treatment Duration: How long were you on it?

Posted by frankstags @frankstags, Jul 7, 2020

I have been diagnosed with Grade 3 prostate cancer with a 4 + 3 Gleason score of 7. This after having 2 PSA scores last year between 4 and 7. The cancer has not spread to the bones. I have received two Lupron injections 3 months apart and will complete 28 radiation treatments in the next couple of days. No surgery. I have tolerated the Lupron shots well with few but manageable side effects. I have an appointment to receive a third Lupron shot next month. My first PSA test after completing radiation won't be scheduled for 3 months. From researching Lupron, it appears that this is used for advanced stages of prostate cancer. From what I was led to believe, I was not advanced. My question: How long and how many Lupron shots might I need to go through? I will have this discussion with my urologist hopefully before proceeding with the next shot. Thanks for any information provided by the group.

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

Hi, my suggestion at this time in your treatment, I would find a GUMedical Oncologist ( genitourinaria) at a center of excellence close to you. He is the doctor that should be in charge of your treatment. Good luck on your journey!

REPLY

I have been taking Lipton since July of 2022. The treatments were once every four weeks. Followed by a Zometa injection every three months. I haven’t really had any problems with this treatment regimen. I take vitamin supplements along with extra calcium. I also take 160mg of Xtandi daily for a year now. I was diagnosed with stage four bone cancer. I had lost about 100lbs and was experiencing very bad back pain. I attributed this to my work schedule which was very difficult. I had a prostectomy back in December of 2017. This was followed up by 30 rounds of radiation therapy in 2019. However when the pandemic hit, I let my treatments, and follow-up’s fall behind. My family told me to get a check-up for the better part of a year. When it got to the point of where I was having trouble with my balance and felt tired all the time. I knew I had to do something. Unfortunately the cancer had spread to several areas of my bone structure. It’s been a year now with the current treatment I’m undergoing. My psa is now .02 for the last two months. And my overall health has improved. I still feel weak at times. But I’m still here. Trying to live for my wife and kids. I have retired on disability. My employer still pays my medical insurance but, I don’t know how much longer. I know medical costs have exceeded $200k. The Extandi for the past year has been around $124,000. Cancer really blows. I’m 59yrs old, I expected a whole different life. I’m not giving up hope. I will keep on doing what I have been doing, and hoping for the best.

REPLY

13 months Lupron and Erleada + RP now PSA .01 Testosterone 90. the meds were manageable and I have been off of meds for 6 months Presently feeling good but I expect the cancer to revisit Gleason 9, CR, advanced stage 3C.

REPLY

I was diagnosed with prostate cancer in March. I have cancer in my pelvic region on both sides and a small spot on my sternum. My first shot of Lupron was in May. My second is coming up. However, his morning at my doctor's appointment, the nurse tells me I will have to be on Lupron the rest of my life or until it no longer works.
Has anyone else been told they will be on Lupron for the rest of their life?

REPLY
@ronmcq1

I was diagnosed with prostate cancer in March. I have cancer in my pelvic region on both sides and a small spot on my sternum. My first shot of Lupron was in May. My second is coming up. However, his morning at my doctor's appointment, the nurse tells me I will have to be on Lupron the rest of my life or until it no longer works.
Has anyone else been told they will be on Lupron for the rest of their life?

Jump to this post

This advise is no surprise as I heard it many times and it probably will apply to me too,

REPLY
@ronmcq1

I was diagnosed with prostate cancer in March. I have cancer in my pelvic region on both sides and a small spot on my sternum. My first shot of Lupron was in May. My second is coming up. However, his morning at my doctor's appointment, the nurse tells me I will have to be on Lupron the rest of my life or until it no longer works.
Has anyone else been told they will be on Lupron for the rest of their life?

Jump to this post

You may want to consider throwing the BS penalty flag on that nurse.

Why would she say that...I would say long ago and far away that was the standard of care...no longer.

First question, based on the clinical data you provide in your post, is your medical team doing more than monotherapy? If not, do some reading about doublet or triplet therapy - https://pubmed.ncbi.nlm.nih.gov/36058809/

Next, read the NCCN guidelines, those are the baseline or standard of care for the various stages of PCa.

Then, do some reading about intermittent versus continuous ADT, it may not be inferior in terms of overall survival and have some advantages, reducing the chance of becoming castrate resistant, quality of life when off ADT....https://pubmed.ncbi.nlm.nih.gov/26378418/

Rather than pre-supposing a lifetime of ADT, I would let the clinical data decide. Your initial treatment may be 18-24 months (remember the doublet or triplet, not mono therapy!), based on your response and the clinical data, you could discuss coming off treatment, actively monitoring with labs and conults every two to four months and decision criteria for going back on.

Here's my clinical history, my medical team knows not to throw "lifetime ADT" into their recommendations, neither should yours at this point in your journey, so old school.

Kevin

Shared files

NCCN PCa Guidelines (NCCN-PCa-Guidelines.pdf)

REPLY
@ronmcq1

I was diagnosed with prostate cancer in March. I have cancer in my pelvic region on both sides and a small spot on my sternum. My first shot of Lupron was in May. My second is coming up. However, his morning at my doctor's appointment, the nurse tells me I will have to be on Lupron the rest of my life or until it no longer works.
Has anyone else been told they will be on Lupron for the rest of their life?

Jump to this post

I had stage 4 but with metastasis to 1 distant lymph node and several areas in the pelvis. My scan is now clean (after 16 months on Lupron, 6 rounds of chemo and radiation.)
…And I was told that I’d likely be on it 2-3 more years depending on my future scans an bloodwork and my tolerance.

REPLY
@ronmcq1

I was diagnosed with prostate cancer in March. I have cancer in my pelvic region on both sides and a small spot on my sternum. My first shot of Lupron was in May. My second is coming up. However, his morning at my doctor's appointment, the nurse tells me I will have to be on Lupron the rest of my life or until it no longer works.
Has anyone else been told they will be on Lupron for the rest of their life?

Jump to this post

I am myself diagnosed with PC and just did my 5th day of EBR today, and 32 more to go. I took the first shot, and the doctor told me that i'll have to be on it for at least two years. To which I told him about the side effects I became aware of. This pushed him to admit that there are side effects.

My goal is to avoid taking even the second shot. I did (and am still doing) some homework and use on NATURAL alternatives to using Leuproreline (same function as Lupron) and thus keep my body free from PC and keep my PSA low.

A friend of mine, who had cancer but is now cancerfree, recommended me to keep my body in an ALCALINE state. Cancer cannot prosper in an alcaline body. He (and now me too) uses Apple Cider Vinegar, two teaspoons everday in a cup of water. He and I drink it through a straw to go strait to the throath and avoid the bitter taste.

Next to that on a daily basis I make tea from Moringa Leaves and eat the beans (3).
Also I eat soursap and make tea from the leaves.

Yesterday in a conversation with a relative we found out that he had PC 5 years ago. He's using moringa beans and soursap leaves and it has kept his PSA under 4. This made his doctor remark that he doesn't know what my relative is doing, but it works. This for me is a confirmation that what I'm doing will help me achieve my goal, which is to be PC free and have a low PSA and not be on medicines and live a healthy life.

I have both a Moringa tree and a soursap tree at home. Thus I'm making full use of them on a daily basis. With the goal to not be needing to even take the second shot.

Google "Benefits of Moringa for Men"

REPLY
@ronmcq1

I was diagnosed with prostate cancer in March. I have cancer in my pelvic region on both sides and a small spot on my sternum. My first shot of Lupron was in May. My second is coming up. However, his morning at my doctor's appointment, the nurse tells me I will have to be on Lupron the rest of my life or until it no longer works.
Has anyone else been told they will be on Lupron for the rest of their life?

Jump to this post

Hi @ronmcq1, I add my welcome along with @hbp and @kujhawk1978's helpful posts.

I moved your question about how long to take Lupron and if it is a treatment for life to this existing discussion:
- Lupron Treatment Duration: How long were you on it https://connect.mayoclinic.org/discussion/lupron-treatment-duration/

I did this so you can see the previous experiences other members have shared and connect with them easily.

Lupron is a treatment that generates a lot of question in the journey with prostate cancer. When I used the Search in the group, I found over 60 Lupron-related discussions. I hope they are helpful as you continue to share your experiences.

REPLY
@robiveson

I have been taking Lipton since July of 2022. The treatments were once every four weeks. Followed by a Zometa injection every three months. I haven’t really had any problems with this treatment regimen. I take vitamin supplements along with extra calcium. I also take 160mg of Xtandi daily for a year now. I was diagnosed with stage four bone cancer. I had lost about 100lbs and was experiencing very bad back pain. I attributed this to my work schedule which was very difficult. I had a prostectomy back in December of 2017. This was followed up by 30 rounds of radiation therapy in 2019. However when the pandemic hit, I let my treatments, and follow-up’s fall behind. My family told me to get a check-up for the better part of a year. When it got to the point of where I was having trouble with my balance and felt tired all the time. I knew I had to do something. Unfortunately the cancer had spread to several areas of my bone structure. It’s been a year now with the current treatment I’m undergoing. My psa is now .02 for the last two months. And my overall health has improved. I still feel weak at times. But I’m still here. Trying to live for my wife and kids. I have retired on disability. My employer still pays my medical insurance but, I don’t know how much longer. I know medical costs have exceeded $200k. The Extandi for the past year has been around $124,000. Cancer really blows. I’m 59yrs old, I expected a whole different life. I’m not giving up hope. I will keep on doing what I have been doing, and hoping for the best.

Jump to this post

Do not give up. Fight for yourself and your family. They need you around. You are young. Do not think about mistakes. That’s in the rear view mirror . Be positive and hope for the best. We all fight. I will pray for you. And others too. Never lose hope.

REPLY
Please sign in or register to post a reply.