Intermittent Hormone Therapy (IHT): How is it working for you?

I appreciate the good insight and sharing from everyone here. I’ve taken a riskier approach with IADT knowing what that could mean. Surgery in 2022 (Gleason 8) and PSA elevated 4 months later. PET scan and biopsy revealed metastasis to the lungs but the nodules were small and scattered so I was told radiation wasn’t an option. Went on ADT (Lupron and Darolutimide) in April 2023 and PSA dropped to negligible within 3 months. After a year of ADT and experiencing the effects described by everyone here, I decided to try IADT. One oncologist was skeptical of the approach and the other fully supported it. He said there was a lot of good data on IADT and my quick reaction to ADT was a good sign. I’m now 8 months off ADT with PSA negligible but checking it regularly and realistic about the eventual PSA rise. As most have said, life gets so much better off of the ADT but the metastasis makes it risky. We’ll see but as we know every case is different.

I started ADT with a PSA of 100+. That was 4 years ago.
Within 12 months my PSA went below 2 and stayed under 1 for 2.5 years. Last year it started rising again its up to 4.9 today. I fantasize about taking a break from ADT nearly every day.

The story of my aPC buddy Tom. We started this stage 4 PC journey about the same time. He couldn’t tolerate ADT well at all. Server sickness for 3 years. Two years ago, he took himself off ADT. How? He searched aground for an oncologist who could help him get off the stuff and support him on his intermittent ADT journey. Results? He works very hard at exercise, nutrition and mindfulness, meets with his oncologist every three months. They have an agreement to begin intermittent ADT whenever needed.

Hi J Marshall,
My story is similar to yours with a few variations. Surgery in 2009, GS 8, PSA started to rise 4 1/2 years later, had pelvic radiation 2018, long story short, started rising again 2021, 9 months Orgovyx 04/23-12/23, PSA was less than .1 after 2nd month. Off all treatment currently, check PSA every 3 months, latest check October, undetectable. HT was/is no picnic, but tried to stay active and was tolerable. My Dr. at U/Michigan is on board for whatever I want to do, so like you, I know the time will come when more treatment will be necessary, but until then I enjoy every day off treatment. I wish you well and hope we can continue the on IADT program for an extended period. Take care.... Bill.

Thanks for the suggestions. Actually, I've tried seeds, and they don't work. Probably because they are pumpkin seeds.

Ironically, I started eating pumpkin seeds years ago, and I remember reading that they can help "prevent" prostate cancer.

Oh well.

My urologist says that cyberknife is not an option for me because of Gleason 9. ??

I do have the luxury of taking my time and looking at various options. Compared to many others here, I seem to tolerate ADT fairly well. And hopefully I won't need to go shopping for a bra soon.

I m putting white button mushrooms in my hot tea daily- 500 mg- powder form. My ADT ends next month after two years. I see if it’s working then. Age 76. Gleason 9/10

what was your starting PSA and did you undergo Radiation or surgery? What is your PSA now?
Mushrooms are healthy and I frequently use in cooked food.

Psa got to 8.5, then RT BEGAN-28 trips, followed by ADT ZYTIGA/ prednisone. PSA dropped quickly to < .01 so far for 21 months. To be tested I. January 23 for PSA again. If no change, then d/ c. ADT drugs

Well I think you have to move on from your Urologist to a Radiation Oncologist and more than one of them.
Urologists can’t really offer you much at this point except surgery, which is probably very risky unless done by someone who does resection post radiation all the time.
From other men I’ve spoken with - and my own experience - find a young RO! They are not prejudiced by outdated studies and business as usual - they are up on the newest techniques made possible by advanced digital software and machines far better than even a few years ago. Best

I will share my experience with Hormone Therapy. However, I have a very different case of PC than most of you and require a different strategy based on other preexisting conditions and other medically related disabilities. I am currently 70 years old and had my “RALP” performed in October of 2022 after being diagnosed with PC the previous August. As my PC was still limited to my PROSTATE, the surgical option was still a viable option for me. The surgical labs verified that 100% of my verifiable cancer had been removed. My PSA went down to < 0.014 since October of 2022 and has remained the same through today, December, 2024. I have been severely debilitated and mostly home confined and bedridden for the better part of 22 years since August of 1991 due to CHRONIC FATIGUE SYNDROME , “CFS,” FIBROMYALGIA, “FM,” and CHIARI MALFORMATION, “CM.” I did have a combination of neck, head and brain surgery to address and improve the debilitating symptoms of my “CM,” which did help with my overall health and wellbeing.
However, I am still managing the debilitating symptoms of my “CFS” and “FM” as best as I can. To date, there are no cures for those disease states and very few treatment options with the ability to provide any measurable and or sustainable recovery options etc.
I was diagnosed with HYPOGONADISM in 2011 and started “TRT!” Although “TRT” does not treat any of my disease states, living with extremely low TESTOSTERONE levels was adversely affecting my overall health and wellbeing. Essentially, I am medically castrated if I am not utilizing my “TRT!” My TOTAL TESTOSTERONE levels are between 20-90! You want to sustain at least a level of 300 just to be on the lowest end of the minimally acceptable level of normal “T” levels. However, even sustaining a level of 300 doesn’t mean it’s adequate enough for any given individual to be at their best. Some charts document 760 to be at the high side while others use 1,000! Regardless………It’s important for any man to enable him to maintain the best level of overall good health and wellbeing that he can by maintaining his optimum level of “TOTAL T,” regardless of whatever number that is. Personally speaking. I do my best between 650-750. However, anything over 750 is detrimental to me just as anything below 500 does not optimally serve me as well.
When I had to totally discontinue my “TRT” a month before my “RALP” plus another 5 months following my surgery I felt absolutely horrible and measurably debilitated!
Although, still somewhat controversial but less so due to much more current and complete research and human studies etc. Continuing my “TRT” dramatically improved my overall health and wellbeing to my pre surgical levels within just 1 week after resuming my “TRT!”
One of the reasons I chose surgery as my initial treatment option was to have the radiation option available to me if my PC did not remain in remission.

All of my doctors kept asking me how I was doing and feeling after my surgery. Quite honestly, I told them that until I resumed my “TRT,” it would be totally impossible to determine.

Unfortunately, unbeknownst to my surgeon, there was a bladder wound resulting from the “RALP” and by Thanksgiving Eve just 1 month following my surgery, I had developed a very very serious urinary tract infection due to my catheter leaking urine into my body cavity. 2 more surgeries and a 10 day stay at the hospital and I was finally ready to go home and start to heal with an earnest effort and opportunity.
My apologies for the lengthly introduction but it’s very salient given the very different and personal decision process any man with PC is forced to address. What treatment options do I consider and ultimately choose?
Many physicians thought my decision to return to “TRT” was absolutely crazy following my successful surgery. To that, I simply stated that based on all of the recent and current information regarding “TRT” following surgery, there wasn’t very much evidence substantiating any measurable quality and quantity of facts that it was a dangerous choice to make and that my PC was surely going to return because of it! In fact, the absolute opposite is much more substantiated by the research and evidence being considered today.
Physicians are starting to recommend “TRT” to assist patients in their overall recovery process from the surgical procedure if their choice.
Every man’s situation and life circumstances are different. Due to my extensive debilitating health history, I had in fact been on the “Doorsteps of Death” too many times to knowingly choose any treatment protocol that would put me on that path again.
Given the fact that there’s a 30%-40% chance of a man’s PC reemerging after the first 5 years of his initial recovery etc. That’s pretty high in my estimation and that only accounts for me who aren’t even on “TRT!”
So………I would rather live however long si am going to live and at least be able to enjoy a minimum quality of life which is worthwhile and enjoyable versus the alternative which would be nothing more then “Living Death” from my perspective!
Of course, there are many other factors to consider as well. I wanted to share my choice as just an example of another approach based on personal life situations that can ultimately agent choose whoever course of recovery options you choose,
Best wishes and good luck,
GODSPEED,
Phil

I have an appointment with a radiation oncologist in about 3 weeks. My urologist begrudgingly agreed to it.