ADT Checklist (Before, During, After)

[billd50]

Here's a checklist that our UsToo Prostate Cancer support group in Colorado put together. Use it when talking with your doctors. It addresses the questions of what you should do before, during and after you receive ADT treatments such as Lupron, Firmagon etc.

docs.google.com/document/d/...

[JohnInTheMiddle]

One has to send a request for access via @gmail account

[billd50 in reply to JohnInTheMiddle]

It should be fixed. I opened up access. Let me know if you can't access it now. Thanks

[JohnInTheMiddle in reply to billd50]

Fixed now thanks.

[Scout4answers]

Thanks for posting

Re: 6) Recheck lipid panel after testosterone recovery has stabilized

my total testosterone has been below normal since I started on Lupron and Zytiga have you found this to be a normal reaction while on ADT?

[billd50 in reply to Scout4answers]

My T before Lupron was about 325. During ADT, my T was very low, like less than 10. It took 12-18 months for my T to return after stopping Lupron. It came back to about 300 and has remained there. I was on ADT for 24months. It takes a while for T to come back, and the longer that you're on ADT, the longer it takes to come back. For some guys, who are on ADT for 2+ years, it may never come back, just depends. Hope this answers your question.

[Scout4answers in reply to billd50]

Sorry i meant Cholesterol not testosterone

Re: 6) Recheck lipid panel after testosterone recovery has stabilized

my total cholesterol has been below normal since I started on Lupron and Zytiga (24 months) have you found this to be a normal reaction while on ADT?

[billd50 in reply to Scout4answers]

That's a good question. I don't recall total cholesterol being below normal either

before or after ADT. So, I'd have to advise you to talk with your doc. ADT can

have a lot of effects on our bodies.

[Darryl Partner]

What they don't tell you about Androgen Deprivation Therapy (ADT, hormone therapy)

youtu.be/zYWbaEx4x4U(Not working as expected?)

[Leeroy21 in reply to Darryl]

Great info! Well done! Nailed it! This video would have helped me 4 years ago when I needed to make the choices for treatment. All my doctor said was..."we're going to turn you into a big wussy" he was right.

[cancerfox in reply to Darryl]

I only had a urologist and a radiation oncologist advising me, and I did get a gloom and doom briefing ahead of time from my radiation oncologist during which some of the treatment side effects were mentioned, but after that they were pretty much unsympathetic to any concerns I mentioned regarding the ADT or radiation side effects. Their attitude was pretty much "Yep, those are expected complications. Good luck to you!" It seems to me a more holistic approach is needed. I did get a little support from my general practitioner, but not much. And telling people to exercise and rely on friends is all well and good, but hardly specific to PC and its treatment issues, and more like generally sound advice for dealing with most medical maladies. Seems like we can do better! 🦊

[addicted2cycling]

You-all having ADT via Lupron, Firmagon etc. have it rough. I just went for surgical castration and life has been a breeze. 😏

BTW OP - great info. 👍👍not for me but others - THANKS

[maley2711 in reply to addicted2cycling]

are you saying that SEs are only from the drugs, not the low T?

[London441 in reply to maley2711]

SE’s are from low T.

[addicted2cycling in reply to London441]

The ADT drugs themselves have SE's in addition to those from Low *T*

[London441 in reply to addicted2cycling]

Yes, but orchiectomy is not different to the degree many wish it was . The problem for most men considering it is the reality that orchiectomy is 100% permanent .

I get its appeal as a preference though. Certainly for an athlete at your level side effects will be far less with either.

[JWS13 in reply to maley2711]

the sidev effects are ONLY from low T ! ADT has minimal if at all side effects and that's where the " smoke and mirrors ' is from most docs...they will tell you that the SE on adt will recover approximately the same time as you are on the drugs..and that is just not true...25% or more will never get their t back and never recover and it is like a life sentence on adt even if you are on it 4-6 months it can become for life . ADT HAS NO SIDE EFFECTS EXCEPT LOWERING YOUR TESTOSTERONE AND MAYBE REDNESS FROM THE SHOT.

[maley2711 in reply to JWS13]

so, to be clear, you are saying that if your T recovers, then your SEs will dissipate or disappear? ADT Does in essence result in SEs, as ADT results in low /zero T. I don't know that there are conclusive studies as to the SEs from the different drugs as opposed to the SEs from low/zero T alone? are there such studies? Otherwise, ust conjecture IMHO.

[billd50 in reply to maley2711]

As your T recovers, many of the se will go away, not all. If you don't proactively address things like gynecomastia (man boobs), you'll have to deal with that separately. Other se such as penis size loss are usually not reversible. Talk to you doc and have him/her give you the whole story.

[Mike1971]

Great list - thank you!

[RMontana]

Thanks for posting this. There is so much here that I would have definitely acted on. Had I known it before I started my two years of hormone treatment. The medical system in general has a “fix it when it breaks “attitude so prevention is on the patient. Finally, someone had the courage and clarity to specify the damage that hormone treatment does to penile tissue, and to a man’s ability to have erections. The highlights for me of the following...

Before; .Baseline testing that is suggested in points one through five. Bravo. I did not know to ask for much of this testing it did not receive it. Others I did ask and had to force my doctor to give me for example, a Dexa scan. Definitely you need this baseline testing. How you know if you’re getting better if you don’t know where you started.

During Dr Mullhall a good place to start and there are others as well. Check out my posts on my website there are other references. Point number 15 is important to understand. Reduction in size is permanent. It is not reversible. For patients that are going to be on hormone treatment for extended periods of time, one to two years or more, consideration should be given for a penile implant ASAP. This is the only mitigation you have to long-term, permanent loss in size. But you need to do it before you lose it because the implant will not give it back to you afterwards. You should also know that Hormone treatment could end your ability to have natural erections if it lasts any longer than six months. Also, it needs to be clarified that the use of a vacuum pump, or injections, is important to try to maintain size and stretch and oxygenate penile tissue. If you don’t do this, during treatment your shrinkage will be more extensive and faster.

After. .Point 3 needs to be clarified. Long-term use of hormone treatment (1-2 years) could permanently damage your ability to generate your own testosterone. Up to 30% of men will never be able to make their own testosterone again. This needs to be clearly understood. Also, loss of libido can be permanent

In summary, if you need this medication, take it. But do it with your eyes wide open. Hormone treatment should be taken if it’s needed. It should not be used as a prophylactic, or preventative. You should not take this treatment “just in case.” Understand what you’re doing and proceed.. This medication can, and will save your life, but it will be a different one that you need to expect, plan for, accept and live with.

Added later; ask for a Decipher test and ask in that test for "Gene Grid Report." See the study below for information. This report will tell you 1) if you will benefit from ADT and 2) how effective the treatment will be...if the odds in your genetic background are against both, why take a "therapeutic poison" as Dr Mulhall calls it...Rick

See MIN 17:25 and MIN 19:03 in this study; healthunlocked.com/active-s...

[cancerfox in reply to RMontana]

An oncologist told me that the genital shrinkage would be reversible once the ADT ended. Based on what I see two years later, he either lied or was badly misinformed. 🙄🦊

[RMontana in reply to cancerfox]

Sorry. He misinformed you. At best, wishful thinking. At worst placating you so you would accept the treatment compliantly. But my heavens was he wrong. The loss of size is permanent. But if we know this then an implant at the start of long term treatment will fix the size prevent loss. For many this choice is gone. Along with size. And yeah, size does not matter… whatever.

[maley2711 in reply to RMontana]

" Hormone treatment should be taken if it’s needed. " Well, what about men who are told t do ADT in combo with radiation? While we seem to know that ADT generally increases the effectiveness of radiation as an initial treatment, it is NOT true that radiation alone is never enuf for a quite large number of men. So , how does the patient determine if he NEEDS it??

[85745]

Taking the peanuts out of your M&M's is complicated at times, Anybody hear of Vitex seems the Monks take it to lower their T- libido,

[Lewellen]

This is wonderfully helpful for me.And it's a terrific reminder for me to try (again) to find an advanced PCA support / discussion group!

[Lightjunkie]

Thanks so much for sharing!

[cancerfox]

In the After ADT Ends section, I would add to check both total and free testosterone to Item #1. The free testosterone test is relatively inexpensive and indicates how much of your testosterone is usable by your body, normally about 1.5%. It's possible to have a high total testosterone level but a low free testosterone level, resulting in nearly the same situation as having low total testosterone. 🦊