Questions for your Doc re ADT option - Advanced Prostate...

Advanced Prostate Cancer

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Questions for your Doc re ADT option

maley2711 profile image
7 Replies

This may be useful for someone with recurrence..........

webmd.com/prostate-cancer/n...

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maley2711
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pjoshea13 profile image
pjoshea13

Thanks. (Be prepared for some blowback though.)

At the beginning of the PSA era, docs were getting ~$1,000 for a shot of Lupron. Naturally, the profit motive led to a belief that early use was good. A crazy view, since ADT is palliative - not curative - & classic ADT fails for most men in 18-24 months & induces CRPC.

When Medicare removed the profit motive, ("It was almost too much trouble" to give the injections, according to my doctor) early ADT became unfashionable, although some doctors continue the practice.

IMO, ADT as monotherapy should be initiated only when palliation is necessary. & BAT should be considered at the same time.

-Patrick

TheTopBanana profile image
TheTopBanana in reply topjoshea13

I’m still so confused regarding early treatment with ADL, the debate regarding aggressive treatment and oligo cure etc etc...The more information I get the more confused I get.

fluffyfur profile image
fluffyfur in reply toTheTopBanana

I am as well. In our case ADT was not suggested but I worry that it's a mistake. Sigh.

TheTopBanana profile image
TheTopBanana in reply topjoshea13

Some articals highlight the danger of ADL, some the complete opposite and the necessety of its early use. But Patrick you recommended BAT if I remember correcrly?

pjoshea13 profile image
pjoshea13 in reply toTheTopBanana

Yes, BAT should be discussed with one's doctor, since it can interfere with the cancer's ability to adapt to low levels of androgen.

I can point you to Sam Denmeade's rationale, but you can browse through:

pubmed.ncbi.nlm.nih.gov/?te...

Best, -Patrick

in reply toTheTopBanana

Patrick is right. There is a latent conflict of interest, especially in N. America, I hope that over here in Europe we a bit better in this regard. Picture following two cases:

Case a: Somehow, one finds a way to lower his PSA outside of SoC. Bells will start ringing: "PSA masking", "Treating PSA instead of PCa" etc.

Case b: Clinical trial involving and sponsored by some ridiculously expensive patented drug/s. "50% or 30% reduction in PSA is considered a positive reaction".

Bluebird11 profile image
Bluebird11 in reply topjoshea13

With each person reacting differently, this all becomes so personal. It takes a lot of personal work via research and personal query and introspection.

I can only go by what our experience has been.

My husband at 55 was diagnosed Stage IV. We did have a bias about the side effects of drugs, also what we consider not personalized dosing problems, length of time on drugs, and the exclusion the body/systems/organs as a whole being considered. The other problem we faced is lack of valid use of supplements that never get the testing they deserve.

My husband's psa was 234/alk phos about 450. Scans showed mets in 9 places in his body that later turned out not to be true although definitely T11, T12, L4, right rib and what they considered left hip femur/hip area. The left hip after deciding on a hip replacement after the bone biopsy showed no mets, with the uptake on the scan actually being severe arthritis and deterioration enough to merit a hip replacement. BTW, scans later never showed after all these years any mets occurring in the left hip.

In the last 6 years doing nothing to T11, it graciously disappeared from all scans. What happened, we haven't a clue.

The right rib pain which was the initial indicator that lead us to intially test has never bothered him again, though is still on the scans.

We went on Casodex without Lupron the first 10 days- his psa dropped from the 234 to 90. He was on Lupron for one year with his psa dropping to .01, alk phos came into range of about 80. We decided to do intermittent Lupron. At that time it was in controversy, though later studies showed it would not make any difference. We mainly did this to keep his testosterone at a decent level while off the Lupron to help the hip replacement heal better.

After another year his psa began to go up again. We jockeyed back and forth, did Lupron again.. we had dropped the Casodex which was a difficult drug for him. From day one of meds we also used supplements that were recommended. We had a team from each corner of medicine/alternative/conventional and a research doc from UCSF.

We did estrogen patches for 3 plus years, did DES, took breaks. Had a good quality of life though we were never, or at least I never left looking to the horizon for the back pocket, next movement protocol since I knew things could change rapidly.

We've also done cannabis suppositories for many years only at night. We've only done the 4:1, 3:1, CBD to THC that was recommended to us.

Instead of blood thinners we used nattokinase, and then cardiokinase. When estrogen wasn't working we switched to Honvan which worked for a good amount of years though we did it with one pill in a bottle of homeopathic immune stimulant and did 20 drops a day.

Wild right? Of course, he's dealt with breasts, with a pulled up testicle, muscle loss that most experience from side effects.

We are in trouble right now with pain.. we have never left having a local oncologist and another prostate specialist. We've done scans, spot radiation twice, though we've tried to incorporate keeping the body systems strong. Exercise when he could, which then became more limited, water, sun, supplements, massage, skin brushing .. basically attempting to detox and not overload the body. Also, food, though we were strict at times and then would enjoy a good BLT... so, I'm really saying we've done a lot of things, been all over the map, tried not to be rigid.. did a lot a mental and healing visualization..

We've been fortunate to have doctors who have helped us with our decision making ... who have supported us especially since what we were choosing was not detrimental.

Could we have had even better results going with other protocols? possibly! We don't look back. Now, we are creating another way of looking at things. We are doing some out of the box protocols. We have nothing to lose. I am sharing what we've done. I'm not recommending anything to anyone.

I learned a long time ago how differently everyone reacts and how very personal this journey is.

I hope my sharing is received with the intention intended which is simply to share what we've done over the last 13 years.

With Stage IV, it's been the steep path. It's not been without grief.. without money, this factors in... We have used our savings- We've come away with being dismayed at the prices of alternative docs, though they helped along the path. We've come away with great respect for our standard of care docs who are on the forefront of all of this and seeing some really hard stuff. The nurses and helpers of our docs we thank, honor and respect.

We choose to look at choices that were negative as answers to making a NO decision in the future, which converts almost everything into gratitude.

Love and Wishes for Strong Health, with being in the moment as much as possible...

My gratitude for this forum is boundless.

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