Dr said Good news Bad news

@jeffmarc

No disagreement..

My point being that rather than making treatment recommendations on autopilot, do the work to get the clinical data to support the decision.

In my case, my urologist automatically said to take D3.

I said, well, I know the data that supports that but jet's get a baseline and then agree at what intervals and how we will check to determine if the baseline has changed such that we need to prescribe.

I did labs and imaging at 6, 12, and 18 months. There was no change in the clinical data.

So, taking D3 for 18 months may have not been of value, expensive urine as one of my medical team likes to say about supplements without a clinical reason to do so.

One of the idioms I used while in the service was "trust but verify..."

Kevin

@kujhawk1978
It is a fact that ADT weaken your bones. My doctors specifically recommended, calcium, and vitamin D to help offset that. The longer you are on ADT the more important it becomes.

That’s not the only thing to do to keep the bones strong. I was on Fosamax for six years And have been on a Zometa infusions for almost 2 years. They also keep the bones strong, which I need after eight years of ADT.

Did you had a DEXA scan to see what your bone density is like? Without that you really have no idea what’s going on. Are you really saying nothing changed after 18 months, That would be unusual. Are you saying your T scores didn’t change at all over that time?

@jeffmarc

Not taking issue with your statement..."It is a fact that ADT weaken your bones."

Nor that "My doctors specifically recommended, calcium, and vitamin D to help offset that." again, not the issue.

I do not dispute "The longer you are on ADT the more important it becomes."

What I am saying is the time periods I have been on it, 18, then 12, months, have not required me to be on D3 and Calcium. In part, maybe because I do resistance training almost every day. My diet generally provides what I need...

Maybe were I to be on ADT continuously, longer, perhaps the need for supplements would come in play.

I did have Dexa scans, no issues other than being old and the usual arthritis here and there..

I think you may not be focusing on my issue, automatically telling us to take supplements without assessing where we are and a plan to monitor throughout the duration of our treatment.

I had prostate removed 10 years ago, max radiation to prostate bed and 7 years of ADT. I like you want it located and then treated. My PSA is doubling every 6 weeks since August and had 4 PSMA PET scans that says no cancer. I’m stage 4 with no visual evidence and there is evidence that the cancer is not responding to ADT like it used to. I also feel your frustration

God is good!!!

@acoope What is your doctor suggesting at this point, since you seem to be castrate resistant? Nubequa is usually given if no metastasis is present (4 negative PSMA)…do they recommend a bone scan?
Phil

@heavyphil the only treatment suggested is Lupron. After 7+ years of ADT I’ve experienced chest pains, compression fracture and now all teeth are loose and surgery to extract next week. Evidently I do not express PSMA protein since it doesn’t show up on scan. I do not want to go back to ADT if there is another treatment available. I should hear back from M. D. Anderson any day now on clinical trials. I chose to stop ADT in late August and early September PSA was .1 now it’s approaching 5.0. It’s moving fast so if MDA does take me I want to be treatment free so they can start from scratch. The issue now is getting Humana and MDA to agree to treat me. Thank you for responding

@acoope hey brother, no problem…fingers crossed for you🤞🤞
Phil

@acoope
You should at least discuss with your doctor about using estradiol Instead of ADT.

It works just as well in reducing the testosterone, but has many fewer side effects. It does not affect bone density like ADT. The patch trials showed how effective it was.

I’ve never heard of anybody having loose teeth as a result of ADT. I wonder if it could be due to something else.

If you go to ancan.org And search for estrogen, you can find two different videos about using estradiol in place of ADT.

@jeffmarc I did research online concerning the loosening of teeth and yes it can happen with long term ADT. It has never been suggested that I take any type of bone supplement during over 7 years of ADT. This has happened in the last 6 months and includes all teeth and before they were very healthy. I know it can’t be proven but it’s a good possibility. I’ve talked to MD Anderson and Humane today and hopefully they can accept me as a patient. I have really great doctors here but their tools are somewhat limited. As you can see from the velocity rate in the PSA time is a factor. Thank you Jeff. The only thing they have offered at this point is to get more Lupron