Beginning prostate cancer treatment

In 2017 I had 43 radiation treatments and took Lupron for 25 months. After treatment my PSA has been less than 0.03 but my body no longer produces much testosterone so my testosterone level is about 15 and I have very little energy and my legs are very weak. I tried a testosterone replacement recently and my breasts started to develop so I stopped it. I'm happy with my PSA level but very disappointed in my energy level. If I could do it over I would stop taking Lupron after about one year.
Wayne

You ask " do the benefits outweigh the side affects..!?" That may depend on your intent and the intent of your medical team. Is the end state "curative" or simply to treat and see if it works?

It may help the group to give a brief description of your clinical history, newly diagnosed, any imaging, PSA testing results...

A combined treatment of ADT for six months and radiation is not uncommon and more and more is common in clinical practice, The bicalutamide is for the flare associated with Lupron. You don't say where the radiation is directed, if you are newly diagnosed then prostate?

Instead of Lupron, you may want to talk with your medical team about Orgovyx - https://www.fda.gov/news-events/press-announcements/fda-approves-first-oral-hormone-therapy-treating-advanced-prostate-cancer. It's advantages over Lupron are:

Lacks the flare.
Lower cardiovascular profile
Quicker to return to pre-treatment testosterone levels.

As to the radiation, you don't say what type and where. I have two separate radiation treatments, 39 Rapid ARC-IMRT for 70.2 Gya to the prostate bed and 25 IMRT to the pelvic lymph nodes, 45 Gya. I have had zero side affects from those, testimony to the modernization of radiation treatment both in the deliver and planning (my radiologist showed me the 3D planning software, simply amazing).

There will be side affects of the ADT, zeroing out one's testosterone can cause the dreaded hot flashes, fatigue, joint and muscle stiffness...I did 18 months of Lupron, I remember never running the heater in my car, even in the dead of winter, having to step outside on the deck in the winter to cool off, swimming in the "unheated" pool at the gym...Most PCA travelers on this journey will tell you work though all that, exercise, keep an eye on your diet.

Attached is a chart I keep which summarizes my journey, find it handy when talking with my medical team or giving my history in these forums.

Kevin

Thank you very much for your prompt, detailed response.
At the time of my prostate biopsy in November, my PSA was 7.4
The cancer is contained within the prostate - no eveidence of perineural invasion.
I am considered to be in the unfavorable intermediate risk group: Grade 3, Gleason score 7(4+3)
My Pelvic MRI in December confirmed cancer limited to prostate only - no boardering tissues/glands/organs.
In mid-January, my radiation oncologist recommended a six month hormone therapy - bicalutamide and Lupron* injection - along with EBRT(moderate hypofracionation -which is considered by national guidelines to be the current standard of care for many men with localized prostate cancer). *It looks like Orgovyx was approved by the FDA in late 2020 for High Risk prostate cancer patients.
I am currently waiting to hear from Mayo Clinic on a second opinion as to the above proposed treatment plan.
In addition to my new cancer diagnosis, I have been dealing with a type of myelopathy since 2017. The lesion on my spine is of unknown origin and has affected my lower extremities: numbness and tingling from my toes up to my waist. I was a neurology patient at Mayo Clinic in Rochester(I live in Wisconsin) for two years. After dozens of tests and failed medications, I was recommended to the UDP - NIH in Bethesda, MD.
I was accepted last year, but the program has been paused during COVID. I have since been under the supervision of my local nuerologist until I can be seen by NIH. My current diagnosis is neuromyelitis optica (NMO). I am presently receiving two infusions of rituxin every 6 months. No improvement in symptoms to date ( four years ago I was running 4 miles a day. Today I have to use walking sticks to get around, with my mobility and balance continuous issues affecting the overall quality of life).
I also have chronic osteoarthritis in my left knee, compounding my mobility issues. I am a candidate for knee replacement, but only after the NMO is addressed.
I am also the primary care giver for my wife, who is in Year Seven of Alzheimer's disease. This has been absolutely devastating, as we have been married 47 years. I need to be at my best - physically/emotionally - for both of us.
Throw in COVID and we have the perfect storm.

I strongly suggest that you discuss alternative strategies with your urologist and radiation oncologist before beginning this journey. Recent online seminars from Mayo indicate that there are several emerging technologies that may be appropriate, under your circumstances.
ADT treatments by my urologist (mine was a TRELSTAR 6 month shot) can EXTREMELY impact your quality of life. In less than 3 months, my health and quality of life fell apart. Luckily, I was accepted by MAYO RADIATION/ONCOLOGY and received a carefully defined proton treatments schedule. 6 months after that, my PSA scores and Testosterone scores are within expectations. (Slow, but better.)
However, side effect have begun to have significant impact (energy loss, strength loss, incontinence, extreme diarrhea.) Maybe another ADT treatment might have been better, is it is appropriate. I have some good days, then some very uncomfortable days. Thankfully, the MAYO team is paying close attention and hopefully a new treatment program will come along soon and improve everything.
Best of luck to you.

Hang in there, I am on my third hormone treatment, good days mostly.. sure hot flashes but that saves on heating! Moody at times.. exersize / walk/ keep moving! Good luck

Sorry for your situation, mine is the same. I was recommended EBRT radiation +6 mo ADT (Lupron) back in April/21. I really did not know how long the Lupron was to be at first, Dr said "lets shrink and disable the cancer & then zap it with radiation" so not being a Dr myself I said OK and took the shot not fully understanding the SE. I did the 39 treatments of radiation with no problems and little SE from Lupron at first but by the time radiation was done and I went to my urol. for checkup he gave me another shot and said it would be the last one (I was so thankful for that to be the end). It is Feb./22 now and I am wondering when this nightmare will ever end. I understand if you are on Lupron for 6mo then it will take another 6mo to get completely over it. That is if your T comes back! I don't know how old you are but it is very difficult to go thru this in your 70"s like me and my T may not return so then what?
Good luck..

I can relate to your perfect storm comment. A couple of years ago I did the 2 years of Lupron along with 43 treatments of Proton Radiation Therapy for my aggressive and advanced prostate cancer. I have been done with the Lupron for a year now and can report that my psa and testosterone numbers are good. However, I have now been diagnosed with Myleodysplastic Syndromes (MDS), a form of blood cancer. Radiation oncologist claims that this was not caused by the PRT, but I am not convinced. In any case, I have it and will be starting down that journey for myself while also being a caregiver for my wife of 58 years who has Lewy Body Dementia (LBD) - similar to alzheimers. And then there is the covid too.

Given what you describe as to your health situation, the six months of ADT may be challenging whichever drug you use. The side affects are generally the same.

Here's a link which may show you are making the right decision- https://www.practiceupdate.com/c/131474/2/3/

I would ask your medical team about using Orgovyx, my medical team has never talked about it being used only in high risk, they use it in patients like you with other health risk factors because of the reason I listed.

As to the advice about exercising to mitigate the side affects,, not sure thee, perhaps your medical team can consider a physical therapist who can design a specific program for you?

Sorry to hear about your wife, it's not how any of want the "to death do we part" portion of our vows to go.

Kevin

I went through the almost exact same treatment that you describe. The only difference is that I had 43 radiations. My hot flashes and fatigue did subside, and my T has returned, but yes it did take 6 months or more for these side effects to abate.

Thanks for the link and the suggestions. Every bit of information is helpful.