Starting Hormone Therapy

I never want to start exercise but always feel better afterward. If he is a tradesman, he’s going to find that jobs take longer and he can’t complete as many each day. Absolutely talk to the dr. about depression. It’s worse without exercise but there are helpful medications, and no shame in asking. Blessings!

Madan

me
To
qaungtri72@aol.com
4:35 PM

Jul 1 at 4:35 PM
For those wishing to avoid or limit the use of ADT ADT in their treatment, I suggest googling Dr Sean P. Collins' recent presentation at the Grand Rounds in Radiology. He was my radio oncologist at Georgetown Medstar. In the presentation he's pretty strongly against lifelong ADT for all cases of oligometastatic lymph node and gives persuasive reasons. He also isn't wedded to the notion that anything above a certain number of affected lesions is no longer oligometastatic disease. For him any ones that can be treated should be.
https://www.google.com/search?q=sean+P.+Collins+grand+rounds&oq=sean+P.+Collins+grand+rounds+&gs_lcrp=EgZjaHJvbWUyBggAEEUYOdIBCTM0MDQyajBqN6gCD7ACAQ&client=ms-android-tmus-us-rvc3&sourceid=chrome-mobile&ie=UTF-8#fpstate=ive&vld=cid:58dc5d3d,vid:48FLZILBIZg,st:0
Another suggestion is googling Dr Ravi Madan, Chief Clinician at the NIH/NCI. He's exploring the notion that we may be overtreating oligometastatic disease on the basis of PSMA detecting the disease at very low levels of PSA. He reasons much of this disease is rather indolent and there's a real question whether some if much any needs ADT. Or that it may be sparingly used if needed.
https://www.urotoday.com/categories-media/2757-urology-tube-video-channels/asco-2025-vl/4947-psma-pet-in-biochemical-recurrence-when-to-treat-vs-when-to-wait-ravi-madan.html
Look up NCT05588128 for the Trial info. He's recruiting

I'm also in one of his trails involving the use
Enzalutimide and an immunotherapy drug. I was randomly assigned to the cohort that receives only the Enzalutimide. That alone has dropped my PSA from 3.7 to .2 in a month. NCT06096870

Radiotherapy treatment is allowed in
NCT05588128 but not in NCT06096870.

NCI leaves your current docs as the lead dogs on the sled and commos all their test results to them. But Dr Madan is open with you as to what the NIH test results imply.

I'm looking at Proton therapy at Georgetown Medstar for a lesion but would have to leave NCT06096870 if I take the therapy. I'm hoping my Gtown docs will think there's not much risk in allowing me to complete the full cycle of Enzalutamide in my trial and then administer the proton therapy. I've read that the Enzalutimide can be a great radiosensitizer.
We'll see

'But my chief point here is there's a lot info and practice out there now that's questioning the use of ADT for all cases or for all time if it's needed.

Strongly suggest contacting Dr Ravi's clinical trials. He's recruiting for both and they pay travel costs.

I just received my last dose of Degarelix - was on it for one year.

I’m 4+5 Gleason 9, suspicious of lymph node involvement. I has a prostatectomy in December.

I experienced weight gain, moodiness, fatigue, and decreased libido.

However, in April I started walking and swimming. Averaged 5.8 miles per day and was nearing a mile per session in the pool.

This was all despite zero testosterone. Unfortunately, I suffered a retinal detachment, which abruptly ended all that.

But the point is that 10 months into zero testosterone, I somehow found the energy to exercise vigorously.

My hot flashes were confined to my face. I’d get sweaty without warning but nobody seemed to notice.

Weight loss has been difficult. Sleep is ok. I’m waking once per night

All told it hasn’t been bad, yet I still despise it. But the payoff, which is living longer, is well worth it

Prostate cancer is a very slow growing cancer. While your husband’s case does seem extreme treatment can frequently give people in his situation many years of survival.

Your biggest problem is his depression. You really need to get him into a doctor to prescribe a medication that will Allow him to get relief. People have reported that Wellbutrin or Zoloft work real well to make life seem to be completely different, easier to manage. Speak to a doctor about it.

3 years ago in October started Lupron shots. Effective until Jan 2025. Very little side effects. Now added Xgeva and Xtandi. These have given extreme fatigue.
Best of luck.

Ask to switch to Nubeqa (Darolutamide). It works just as well and doesn’t have the fatigue problem that you get with Xtandi (Enzalutamide). I’ve been using it for a couple of years and I know a lot of other people using it and it works very well.

It also doesn’t pass the blood brain barrier, and therefore causes less Brain fog.

They do it to remove the source of the cancer. Saddened to hear it is on the move. ADT is intended to stop T which feeds the cancer. My suggestion is to find a way to push away from the chair, get moving and make the most of every single day. It makes me feel better the majority of the time. Best wishes on your journey.

Well, you've gotten a lot of good ideas and experiences from the forum so not sure what I can add.

Given his clinical data, high risk the guidelines such as NCCN and AUA suggest systemic therapy, doublet or triplet.

There can be a difference in which ADT agent, say Orgovyx vs Lupron, which ARI, Nubeqa vs Xtandi. Those differences can be in which side effects, to what severity. As @jeffmarc says, Nubeqa side effects may be "less" because of the brain blood barrier. Orgovyx has a lower cardiovascular side effect profile, no flare, higher sustained castration and faster testosterone recovery when, if, stopping.

Then there are issues surrounding insurance, approval, financial toxicity, co-morbidities...

Which one and whether or not to do doublet or triplet, chemotherapy, radiation. is a discussion with your medical team.

@icorps is highlighting the issue of over versus under treatment , too soon, too late, for how long, continuous or intermittent. Generally the high one's risk, the greater the likelihood of systemic therapy for longer periods of not continuous. Radiation is in play too, I've done it three times.

I would ensure I have a multi-disciplinary team, radiologist, oncologist, cardiologist.,.,

When making treatment decisions there is a plethora of choices based on one's clinical data, the science in the guidelines and data emerging from clinical trials. My takeaway is there is single "right" choices, there are "good" ones.

As to managing the side effects, in my experience and from what you read by others on this post. there are three things you control;
Diet
Exercise
Managing stress and attitude.

Your medical team can't do those but they are powerful tool in mitigating the side effects and longevity. Your medical team has some tools in their kit bags to help in managing the side effects such as hot flashes, one density, so speak up during those consults and make them do their job.

Finally, keep in touch with this forum as your journey goes along, there's a lot of experience, understanding, and layman's knowledge.

Kevin

Hello Ken, Thank you for the encouragement words. We are still recuperating after the RALP+LAD operation and it is hard for us to accept that it is in such an advanced stage.
I wish you all the best and most of all 0 numbers.

I take Bupropion, the generic version of Wellbutrin, and am being weaned off it now.

The immediate effect was that it helped a lot with brain fog and giving me more energy. My doctor said it's an activating antidepressant which is good for depression but not that good for anxiety. That in itself was HUGE as ADT really affected my memory and cognition a lot.

The antidepressant effect took several weeks to kick in and was subtle but noticeable.

Several guys in my support group said they take Effexor and that it helps with both depression and hot flashes. I never got those so I guess I was lucky in that respect.