Question for biochemist types: What is the basis of cognitive problems with long term ADT? & debilitating fatigue? Detailed as possible.

[yamobedeh]

Physio/biochemical basis of cognitive & fatigue issues being on ADT. Drugs & supplements to help? On triple blockade Trelstar, Casodex, Avodart.

[efsculpt]

Thanks, Nalakrats, great explanation.

Craig

[cesanon]

Without contradicting nalakrats, I don't think they really know.

It apparently varies a lot from person to person.

My sister who is a physician tells me in the clinical setting many Docs will deny it is occurring and attribute it to depression.

They don't know how to deal with it, so they find ways to avoid dealing with it.

[EdBar]

Thanks Nalakrats, great explanation however I don't believe that statement on estradiol is quite accurate. Dr. Myers and now Dr. Sartor both have me using estradiol patches daily to help with side effects of ADT. They have helped greatly with the reduction/elimination of hot flashes and according to Myers it also helps maintain bone density, brain health and helps avoid blood clots that are caused by advanced cancer - it has been known cause blood clots in women but studies have shown it has the opposite effect in men (per Myers). I've been using them for almost 3 years now.

m.youtube.com/watch?v=KBpg_...(Not working as expected?)

This link should take you to a video on estradiol from Snuffy Myers.

One More Cast...

Ed

[yamobedeh]

Thanks Nalakrats.

[cesanon]

"nd I keep trying to direct people to the Memorial Sloan Paper of 1976--where 260 cadavers who died of Pca--their prostates when analyzed had enormous amounts of deposited Estradiol--this goes back to before the use of ADT----the cause of all these deaths were attributed to the Prostatic material to be appearing as Female Tissue, due to the levels of Estradiol. They never followed thru, in how the Estradiol got into the prostates---some of us have."

1 nalakrats, do you have a link to the study.

2 what is the follow up that you did?

[Dan59 in reply to cesanon]

Since so many of them were on pcspes, and estradiol/estrogen was the primary treatment for apc at the time, do you suppose this is how the estradiol got into the body of the cadavers?

[cesanon in reply to Dan59]

What is pcspes?

[Dan59 in reply to cesanon]

Pc spes was an herbal supplement Men used for apc. It was developed by botanical labs in the mid 90s and banned in 2002 when it was found to be laced with estrogen/estradiol.It worked for many for a while. There were lots of studies and trials on it by Eric Small, WKOH and others. Here is a link. mskcc.org/cancer-care/integ...

Various forms of estrogen have been used in APC for many decades before I saw myers 11 yrs ago.

[cesanon in reply to Dan59]

The Sloan Kettering 1970 study was done well priot to the 1990s. And probably at no time would a random sample of pca patients have many of them using an esoteric supplement.

Especially prior to internet availability. It would have been very difficult to find and to source. Not many people would know about it and where to buy it.

Certainly not in the years prior to 1970 when the alleged estrogen damage accumulated. You just couldn't drop by the local Whole Foods or Walgreens to purchase botanicals.

Back then few normal people took anything other than what their Doc prescibed.

So whatever evidence The Sloan Kettering 1970 study may have extracted from autopsies of deceased 1970s males. It can't substantiate anything about the effects of estradiol treatment. It just can't.

[Dan59 in reply to cesanon]

Huggins and Hodges began using estrogens in the 40s, and in 1960 DES was shown to be as effective as orchiotomy, here is the link

ncbi.nlm.nih.gov/pmc/articl...

[cesanon in reply to Dan59]

Dan59

1. What portion of patients in the 20 years prior to The Sloan Kettering 1970 study do you think might have been taking estrogens?

2. What dosage levels, compared to modern vivelle levels use by Myers and Docs who adopted his approach modernly?

[Dan59 in reply to cesanon]

When they used DES in those days it was primarily 5mg daily ,in later years they found smaller doses such as 1 mg to be nearly as effective with less of a blood clot issue, I do not have the percentages, but it was a common treatment after 1960. I would guess similar to what percentage of men nowadays are on zytiga , as there was even less options in those days. Lupron was approved in 1985. Before that I think it would be DES or Orchiotomy.

[cesanon in reply to Dan59]

"estradiol/estrogen was the primary treatment"

When Myers put me on estradiol in 2011, my research at the time found that estradiol was a very non-standard treatment. That it was not part of any standard protocol.

In fact the medical establishment thought it was kooky.

In fact I remember many many people complaining online that their docs would only prescrib one adt drug at a time, as opposed to the cocktail that Myers was using.

So I find it implausible that there can be any statistically valid clinically based evidence that it has adverse effects. Unless such a finding was based on access to Myer's clinical records... Or those of the minority of oncologists that were following his then cutting edge protocols.

[Dan59 in reply to cesanon]

I 100% agree! In fact for me I was able to successfully rechallenge with High dose climera estradiol patches and get a response for a significant amout of time 4 times when other trieaments stopped working and to me greatly contributed to my unusual survival.

[j-o-h-n]

Hard to find certain ????? when speaking.

Good Luck and Good Health.

j-o-h-n Sunday 05/20/2018 11:57 AM EDT

[EdBar]

Well, I’ll have to agree to disagree and go with what two of the top oncologists in the field - Myers and Sartor have me doing. My local onc who is also an excellent doctor who treats a lot of PCa patients also has never had a problem with it. It has sure helped with a lot of SE’s and improved my QOL. As for Myers, no he’s not god, but I give him a lot of credit for my current status, especially given my starting point. I’m gonna keep doing what’s been working and hopefully keep the beast subdued for a long time. On we go...

Ed

[J_Monacello in reply to EdBar]

I stand with you, EdBar. Plus, it's hard to argue with the incredible success you have had, as you say, given your dire starting point. The only downside I can think of with estradiol therapy is gynecomastia. Has that been an issue for you, or have Myers or Sartor ever mentioned that as a side effect of estradiol? Thanks.

[EdBar in reply to J_Monacello]

Yes, I have a bit of bilateral gynecomastia but who knows if it is from estradiol, Lupron or Xtandi or all of the above. Myers had me taking cabergoline to help with it but Sartor recommended I stop it in order to lessen SE’s. I work out daily and keep my weight in check which seems to help. Compared to other guys on the beach my age I don’t feel it’s that bad anyway. And if it is so be it, it still beats having the constant hot flashes etc. I was getting.

Ed

[EdBar]

No one asked you to, thanks and have a great day!

Ed

[cesanon in reply to EdBar]

I sort of did. LOL

[cesanon]

"They never followed thru, in how the Estradiol got into the prostates---some of us have."

Nalakrats, I meant the followup that you did?

[cesanon]

"84 Advanced Credits in Various disciplines in Chemistry, with 54 years of Naturopathic experience"

Who is this doctor you speak of?

[FCoffey]

"What if the easing of side effects kills you."

What if ADT kills you? That list you started with is comprehensive and accurate; and more than a few of those effects can be lethal.

Every choice comes with chances for both the desired outcome and bad ones. ADT is virtually guaranteed to produce more than a few bad ones - its more a question of which ones and how bad rather than if.

"Are we interested in treating the symptoms of ADT, or the Disease itself--I ask? "

I'm interested in treatments for the disease that don't require ignoring all quality of life considerations. I'm also interested in treatments that aren't likely to kill me or leave me with severe dementia should I live longer than the onc predicts. That eliminates ADT for me. Other men will decide that the costs of ADT are worth the chance that it will help. That's fine too - for them.

[Magnus1964]

My biggest problem was the sweats, but they gradually go way. Of course they start up again if you go on a new ADT drug, then the night sweats reduce in intensity. In spite of Nalakrats list of every side affect possible this is the one you should look for.

[yamobedeh]

The consternation around the cognitive and fatigue SEs from ADT is shared by most here. Thanks for all the responses......of all stripes to my initial post in this thread. In response to my urgent plea for some relief from the fatigue and cognitive ADT dog's breakfast, my RO at Dattoli, via the nursing staff, told me they are now recommending that patients take 800mg of creatine twice a day to help with the cognitive issues. Most sports and naturopathic stores have it. Not expensive in non -capsule form. My RO also reinforced the importance of nutrition and regular exercise at as strenuous a level as one can tolerate. My primary care doc is aware of my issues with ADD and dopamine deficiency related depression, nicely aggravated by the ADT. He prescribed Vavance 10mg as a sort of off label dopamine boost, intended to improve my motivation and focus.. After a couple of weeks of doing all of this, I can see improvement, although the SEs do appear and recede, as does the effectiveness of the foregoing, at random.

I'll repeat that the estradiol patches have eliminated the hot flashes & sweats from the time I started them. I do have some man boobs, having elected to forego preventive radiation on them, knowing I have the option to attend to that later via surgery. I'm OK with that. Thankfully, not many male pals try to pinch my nipples.