Optimal Duration of Hormone Therapy

@prettypass2000

Ask your doctor team about starting 600mg calcium twice a day and vitamin d at 2000IU. I personally take 5000IU with vitamin K included. Look up doc John Mulhal at Memorial Sloan Kettering on maintaining sexual function through the ADT process.

Here is one video.

Hi @jeffmarc, I’ve shrunk to 5’9 and am at 172.5. I guess I have to work harder!
Can you remind me of your thoughts about Turkey Tail mushrooms? I have some capsules my daughter sent of those and Lion’s Mane. Any thoughts?

@robertov
Someone in this forum is a real big proponent of Turkey tail mushrooms. They take a good amount of it every day and have been saying it has helped keep their cancer at bay. There’s been some studies that show it’s beneficial.

Here’s a long discussion of it
https://connect.mayoclinic.org/discussion/turkey-tail-mushrooms-and-fos-anyone-else-here-use-these/
If you go to the top of the prostate cancer before him and search for a turkey tail mushrooms, you can find a lot more.

@oldgreenpaint Thank you! He already started taking Calcium Citrate 500 mg twice a day and 1000 iU of vitamin D3 as another member here recommended. We will see his uro-oncologist on Wednesday since he was on medical conference oversea, so the RO prescribed the Orgovyx to him yesterday instead of having my husband waits for several more days.

@prettypass2000

All good! And you are researching, which is good also. I have no idea regarding how much you know about how adt affects men and their spouses? So I will just give you some of my random thoughts, after 5 months. I thought I knew a lot, but there is so much to know. Here is an excellent Canadian website that will help a lot. I am in USA and I emailed them and they allowed me to join a zoom meeting that they do I think every other month. You may wish to try and join an educational meeting. If Canadian, you get the book for free, but you can find it on Amazon. Really good book. One thing you need to understand is that 12 months of any adt will be hard on sexual health. Penile atrophy is a real thing. A man normally has multiple erections while sleeping, and the purpose is to keep the penis working. That will highly likely stop happening while on adt. So you need a plan to mitigate that, and your husband needs to understand this sooner rather than later. Highly likely that your oncologist will not have a plan for this, so you need to do your homework.
https://www.lifeonadt.com/

@oldgreenpaint Thank you so much. I always want to know more. ADT and radiation therapy are very new to us. Though I’ve spent 5 years researching, there are still more that I don’t know. I very appreciate that you inform me on all of this.

@jeffmarc Thanks Jeff. Great information.

A good question...

Studies and statistics say...!?

As my radiologist said when she sits on the hospital tumor boards, the oncologists are all over the map when it comes to which agents, how long and their rationale.

Generally, I see 6-36 months in guidelines and clinical trails if definitive treatment is a choice.

With indefinite, well, the lengthy decision is taken out of the equation.

So, if deciding on systemic therapy, with what, how long. We know the differences generally between Lupron, Orgovyx, Casodex... We also know the differences between say Nubeqa and say Xtandi. We can list the know side effects, questions unknown is which ones will we experience and to what degree?

What are the pieces of the systemic therapy therapy decision making...?

Well, there is the science, GS, GG, Biopsy report, Pathology report from surgery, lab results, PSA, PSADT and PSAV, testing such as Decipher, Genomic, Dexa Scans...low, intermediate, high risk...heck, GS 8 vs 9-10, is there really a difference in making our systemic therapy decision...the medical community says yes and points to data from clinical trails - PFS, RPFS, OS...

Then there is science associated with co-morbidities - cardiovascular, diabetes, kidney function, weight, pulmonary...

What about drug interactions,,,? My oncologist was hesitant to prescribe Xtandi until was my cardiologist was on board due to interactions with Eliquis.

Lest we forget insurance, national health system rules...

Don't forget our medical teams, some who may not be as current as we are!

Trying to apply the science, the NCCN and AUA guidelines plus clinical trails to our specific clinical data. Keeping in mind that because they are the science, the rigor required, they may be dates, they ARE population based...

This is a hetero, not homogeneous disease, my PCa is not yours, the SEs I experience and the severity may not be yours, my T recovery when de-intensifying may not be yours, my insurance is not yours...

Maybe most important, the outcomes we want, quality of life while keeping in mind longevity.

Will the side effects over time degrade the quality and quantity of my life? My radiologist once said "Kevin, if you die of a heart attack, we have succeeded in you not dying of PCa...!"

All that's before we get to the discussion of duration of systemic therapy!

About that duration...

Both times I did systemic therapy, the duration was open to discussion between my medical team and I. In the case of my first time, 24 months Lupron in conjunction with six cycles Taxotere and 25 IMRT to the Whole Pelvic Lymph nodes was the agreed upon duration between Dr. Kwon and I. There were studies which pointed to 18 or 36 months. There were also studies which pointed to 18 months being as effective as 24 and 36. So, at 18 months, an early adopter of de-intensification if PSA drops to undetectable in the first 3-6 months and stays there, ok to come off treatment and actively monitor, we did.

The 2nd time is familiar to many of you. I wanted to do SBRT and six months systemic therapy, aka the SPORT trial. My radiologist agreed with that. My oncologist on the other hand advocated for the SBRT but 24 months systemic therapy, Orgovyx + Xtandi, yikes! We settled as you know on SBRT +_12 months Orgvyx, hold the Xtandi unless PSA did not drop to undetectable in the first three months and revisit a decision at 12 months to de-intensify or continue systemic therapy to 24 months. My radiologist supported coming off, my oncologist...we came off, my radiologist told my oncologist that I would actively monitor while off and would go back on treatment when the clinical data said it was time to do so. Here we are, 24 months later, the clinical data has not said so!

As to the question of "time to resistance..." Well, ditto.

My path has been to make hybrid decision, the guidelines are a starting point, we then look at clinical trails, review ALL the clinical trails and based on the question, is this likely to work for the next 3-5 years, decide. I am not sure of the value of a time horizon longer than that. As to the OS differences, well, just getting up in the morning means you are exposing yourself to situations that may end your time on this earth, that idiot who ran the stop sign,,,

I remember sitting with my mom when her oncologist told her at best chemotherapy could extend life six months but she may not like the quality of that life. She looked at me, me, my sisters and said, no thanx, tree weeks later, gone, albeit at home, hospice with all of us around.

Kevin

@jime51 Sounds to me you have a plan! I would use a stationary bike. While it is nice riding on our bike path, I also worry about my balance. I used a stationary at the gym when I was going and given the amount of time I was actually riding is was perfectly suitable and low likelihood of a fall :-). My friend and neighbor was put on a treadmill by his PT and fell fracturing bones in one leg. He is now laid up with no movement and he is much older than I. Sometimes these PT are not a smart as they should be.

@robertov Yes, trying an elliptical bike at my PT's suggestion was the cause of breaking my left hip. I can't tolerate a treadmill without holding on with both hands. I'll stick to the stationary for now, thanks!