I have a question to those of us using Lupron

Posted by dpcarriere @dpcarriere, May 26, 2022

I was at Mayo Scottsdale today discussing my situation with a Radiation Oncology PA. I told her of my extremities pain caused by, in my opinion and 1 year experience, the use of Lupron. She told me that, according to Mayo data, I was only part of an 11% group complaining of pain due to Lupron usage. I question the accuracy of that data and so I ask for a response. The question being are only 11% of us experiencing extremities pain due to the use of Lupron?? Another way to pose the question. Could it be that Mayo is only aware of 11% of Lupron induced pain? Has someone asked 100 of us and received only an 11% positive response?

I might pose this question. If you are using Lupron are you experiencing pain in your arms and legs?? How many "no" answers are there among us??

This is an important question as 11% is not that significant a data response.

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

ken1946 I'm with you. May I ask where you are? If you're in my area we could go out for a beer. Have you had the PET scan with Prostate tracers to know exactly where your cancer/s are? Also are you aware of upcoming research in antigen tagged cancer abatement? There are others on this forum who are far more knowledgeable than I who could explain these recent advances. You need to know exactly what your options are.

REPLY
@ken1946

I took Lupron for two full years after RP and 44 radiation treatments. I am extremely tired and weak. I work out daily and eat a heart-cancer healthy diet. My diagnosis was stage 4 aggressive. My cancer had spread to my lymph nodes. I was given three to five years to live if I followed the treatment plan. I am in year four. Please keep this discussion going.

Jump to this post

I was also treated with Lupron, but for only a short time. My oncologist stopped treatments due to side effects.
I started taking Relugolix this past October, and experience fewer side effects with a PSA number of 0.15.
My Doctor told me that eventually I will have to move on to more advanced forms of hormone therapy, and possibly chemo. There is something on the horizon called Theranostics that sounds promising. I wish you the best in your treatments. Hang in there! Phil

REPLY

I have a question for everyone? When the primary treatment(surgery or radiation)fails why do they mess around with Lupron when we know it does not kill the cancer. Why not move on to chemotherapy then like they would with breast cancer instead of waiting until the body is weakened by the extended Lupron usage making it that much harder to kill the cancer and tolerate the chemotherapy. No wonder the prognosis is so poor for chemotherapy patients since they have waited so long to start it.

REPLY

My prostate cancer was diagnosed at Mayo MN.. they gave me the first and it turned out only Lupton shot I would get. The shot was given to shrink the prostate before 20 shots of the high radiation was started to kill the cancer cells . That seemed to work.. I was very lucky.

REPLY

I am not a medical expert so this is just a layman's understanding.

First, the PCa cells are a heterogeneous group, some of which will die from the lack of testosterone, others will not. Those which "die" are part of a de-bulking approach.

2nd, mono therapy is not generally the standard of care, rather double or triple therapy.

That double or triple therapy can include chemotherapy which kills fast dividing cells.

A second ADT may be added which can either shut off the testosterone coming from the adrenal glands ), Lupron only shuts down the testicles) or bind with the PCa cells and prevent them from using any testosterone ( using their "receptors").

Finally, there is radiation which can be either "smart" or "dumb." My terminology I think of is smart as in laser guided bombs which can be delivered with extreme accuracy to a known target, in the case the site of where PCa is - in the Prostate bed, lymph nodes or organs based on imaging. Dumb means well, let's just radiate the prostate bed...(SRT).

A decision to do double or triple therapy is based on clinical data such as PSADT, PSAV, imaging, lab results that indicate bone health, liver health...life expectancy, any cardiovascular issues, co-morbidities and of course, patient preferences as well as financial resources.

I'm headed out to do the Garmin Unbound 50 mile gravel bike ride with my daughter this morning so don't have the time to provide a more detailed explanation which I have on my computer but that's the gist.

Like I said, if it's mono-therapy you're thinking of or your medical team is telling you, it may very well work for a long time. Still, I'd consider double or triple therapy, May produce better results and provide for a break from treatment with a durable progression free survival time.

Attached is my clinical treatment history. The triplet therapy has produced a four year break from treatment in my specific case

Kevin

REPLY
@round5

I have a question for everyone? When the primary treatment(surgery or radiation)fails why do they mess around with Lupron when we know it does not kill the cancer. Why not move on to chemotherapy then like they would with breast cancer instead of waiting until the body is weakened by the extended Lupron usage making it that much harder to kill the cancer and tolerate the chemotherapy. No wonder the prognosis is so poor for chemotherapy patients since they have waited so long to start it.

Jump to this post

By taking Lupron you are on a type of hormone therapy for prostate cancer. Prostate tissue (normal or cancerous) needs testosterone to grow. Lupron inhibits production of a hormone that, in turn, is needed for testosterone production. ... so, the Lupron is given to prevent cancer growth/spread.

It can be used in conjunction with a drug called Darolutamide, which binds to prostate tissue and blocks testosterone from binding. ... a double whammy.

Your doctor should have explained this to you. Ask him/her to next time.

I've recently started both. Not much I can say yet. Good luck.

REPLY
@round5

I have a question for everyone? When the primary treatment(surgery or radiation)fails why do they mess around with Lupron when we know it does not kill the cancer. Why not move on to chemotherapy then like they would with breast cancer instead of waiting until the body is weakened by the extended Lupron usage making it that much harder to kill the cancer and tolerate the chemotherapy. No wonder the prognosis is so poor for chemotherapy patients since they have waited so long to start it.

Jump to this post

Oh, an addition to my earlier reply. There is no chemotherapy available. Think of Lupron as a bridge treatment to the time a treatment is available. They have a new F18 radiotracer which specifically locates in prostate tissue. We need to wait for a research effort to replace the F18 with a radio-therapeutic isotope, clinical studies, and FDA approval. We just need to stay alive for it to come along. Have hope and do what you can do.

REPLY
@bburg

By taking Lupron you are on a type of hormone therapy for prostate cancer. Prostate tissue (normal or cancerous) needs testosterone to grow. Lupron inhibits production of a hormone that, in turn, is needed for testosterone production. ... so, the Lupron is given to prevent cancer growth/spread.

It can be used in conjunction with a drug called Darolutamide, which binds to prostate tissue and blocks testosterone from binding. ... a double whammy.

Your doctor should have explained this to you. Ask him/her to next time.

I've recently started both. Not much I can say yet. Good luck.

Jump to this post

I am very aware of all you said. Have been for a long time. Since I have just completed my 5th.round of treatment with 4 failures behind me I have become quite knowledgeable of the basic treatments and drugs involved. I think you have missed my point. The drugs you are on will not cure you,they will only neutralize the cancer for the time being and that comes with side effects. And yes there is chemotherapy available they just use it later as a last resort when the other drugs such as you are on quit working. By then the body is so run down from the years of ADT that no wonder the chemotherapy doesn’t work well. They don’t do that for breast cancer do they? They hit it harder earlier. Why not do that with prostate cancer for the higher grade disease with early reoccurrence. This was discussed by some doctors including doctor Kwon from Mayo during the PCI summit.

REPLY

My brother gets Lupron injections. I don't know the dosage but I do know he gets them every 3 months. He has never complained of pain in his arms or legs. He has back pain that was present prior to prostate cancer and his back pain has not changed. He walks multiple times a day for an average of 6-7 miles. He is prescribed other medications and he feels his muscle tone has decreased since starting these medications.

REPLY
@kujhawk1978

I did 18 months of Lupron

Side affects I experienced:

Hot flashes
Testicle and penis shrinkage
Joint and muscle stiffness
Mild fatigue

Throughout the 18 months I continued with my regular exercise program - riding my bike, swimming, elliptical,, walking, lifting weights, playing basketball.

Kevin

Jump to this post

Just wondering if you took any nutritional supplements to help with fatigue?
Thank You
Dan

REPLY
Please sign in or register to post a reply.