Happy New Year and Update: Update: I... - Advanced Prostate...

Advanced Prostate Cancer

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Happy New Year and Update

Scout4answers profile image
44 Replies

Update: I took what I hope will be my last Lupron shot which will work until March 5 /24. I will have had 31 months of Lupron with mostly undetectable PSA. I will have had 29 months of Abiraterone at that point. Had IMRT radiation 24 months ago

Both my MO and RO are interested in whether they have " CURED" me of Oligometastatic stage IV, Gleason 9. f-18 axumin PET scan showed only spread was to 2 adjacent Lymph nodes.

(Their definition of CURE is that cancer does not return for 5 years)

So we will stop all drugs and see what happens.

Wishing you all a positive journey through ‘24.

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Scout4answers
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treedown profile image
treedown

Good luck.

Scout4answers profile image
Scout4answers in reply totreedown

How are you doing?

treedown profile image
treedown in reply toScout4answers

Doing well, but will know more by the end of this month. Just hoping things stay where they were end of Oct.

TJS-1 profile image
TJS-1

🤞and wishing for you a fond farewell from this brotherhood. That would be a stellar launch into 2024, Amigo!

Scout4answers profile image
Scout4answers in reply toTJS-1

Thanks

Glad to see Daro is working for you as a mono, best of both worlds, low PSA and highT.

May be my next course if they did not find the cure.

great picture! Home stretch! So you had an Auximin scan and a Pylarify scan and both showed avidity in lymphs?

Scout4answers profile image
Scout4answers in reply to

Thanks for catching that I changed it to f-18 axumin PET scan. I did not escape the brain fog and memory issues associated with ADT ;-)

Cyclingrealtor profile image
Cyclingrealtor

Scout -

First, CONGRATS! I am looking forward to the day I am able to stop adt. It's a wrecking ball of metabolic health for sure and any break would probably be nice.

You state that you have had "mostly" undetectable PSA over the 31 months. Have you used standardized .X or an usPSA of a .XX or .XXX?

I have been on Lupron since July 2022 and have a 4th adt shot for the 15th of this month. I also have been on abiraterone too since January 2023 but my MO did cut it down to 1 pill daily. I have had one usPSA and it was < .006 which I like but I am anxiously excited to hopefully stop the adt/ abiraterone in July 2024. I would be about 24 months adt and 18 months abiraterone.

All the best!

Scout4answers profile image
Scout4answers in reply toCyclingrealtor

2 decimal points , <.01 , all from same lab in US.

The "mostly" comes from experimentation with the SARM - RAD140, which definitely hiked my PSA.

swwags profile image
swwags in reply toScout4answers

Scout, pease clarify. What hiked your PSA? The SARMS RAD140? Please expand on those thoughts. What you wrote in your initial post is too abbreviated for me to get a grasp what happened over time. With SARM, how do you know you're getting a quality product? Last thing I read was this old information:

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

Scout4answers profile image
Scout4answers in reply toswwags

see my profile for details

swwags profile image
swwags in reply toScout4answers

Thanks but didn't answer my question and seems like a less than caring reply to a fellow member. If you don't want to help, that's fine too. Your profile says you started SARMS 10/22 and quit after a month because PSA rose, then again you note that you restarted it 7/23. No mention if you still take it and nothing that addresses my question. about quality, whether the SARMs was the culprit to your PSA rise in 2022.

Scout4answers profile image
Scout4answers in reply toswwags

Sorry you feel slighted, I can not answer your question about quality I have no frame of reference. I stopped after second rise in PSA as it seemed clear to me that RAD 140 was the only variable that had changed.

Note:

Went back and looked at profile ...on 3/7 23 it does say that I stopped for the second time. I decided SARMS were not working for me and have not taken them again.

swwags profile image
swwags in reply toScout4answers

No matter. In any event, I hope you move from hearing the word "remission", to "cured". Best of luck.

Scout4answers profile image
Scout4answers in reply toswwags

Thanks

swwags profile image
swwags in reply toScout4answers

thank you

Cactus297 profile image
Cactus297 in reply toScout4answers

You are in remission, correct? and are hoping for a cure? I just want to make sure that I have my facts straight. Thanks so much.

Scout4answers profile image
Scout4answers in reply toCactus297

I don't consider myself in remission or cured. I am still on ADT therapy + abiraterone and prednisone. Therapies will end in March and then I will find out what my status is.

Cactus297 profile image
Cactus297 in reply toScout4answers

Thank you and I hope you will be in remission. You did feel taking SARMS at one point made your PSA go up right? My son has given some thought to taking it and he’s on ADT too.

Scout4answers profile image
Scout4answers in reply toCactus297

they are not all alike, I took RAD140 and it spiked my PSA.

Cactus297 profile image
Cactus297 in reply toScout4answers

Thanks. I read up on it and the RAD140 I guess it is the most powerful. Maybe that’s why your PSA went up.It’s hard to say.But I’m happy you had a happy ending when you stopped talking it. I hope that this is your last injection of Lupron and that you’ll be in remission. Best of luck to you for a remission.That word is music to our ears!

Scout4answers profile image
Scout4answers in reply toCactus297

Thank You

timotur profile image
timotur

Congrats on making it through these treatments. Just looking at your labs, your cholesterol is very low with a statin. I would .suggest reducing the dose or getting off a statin completely, for several reasons— one is very low cholesterol is associated with early onset dementia. You do enough exercise to have good lipid numbers it appears, as well as a good diet. CV risk is more about APO-B and lp(a) than raw LDL numbers, read the studies and form your own opinion about it rather than blindly taking a statin. Hate to see someone doing well with everything else and needlessly being on a statin.

Scout4answers profile image
Scout4answers

Thanks, and thanks for your concern.

The statin I am taking Pitavistatin also has been shown to slow progression of PCa. I will start checking for APO-B and IP(a).

Kaliber profile image
Kaliber

great photo brother. Coco looks lovely as usual. We’ll keep our fingers crossed for you being in remission. Where’s there hope for you, there is hope for all of us.

Best in ‘24

❤️❤️❤️

Scout4answers profile image
Scout4answers in reply toKaliber

Thanks Kal the best to you as well

Kaliber profile image
Kaliber in reply toScout4answers

❤️

Mike1971 profile image
Mike1971

Fantastic - well done!

Scout4answers profile image
Scout4answers

Thanks, I am a lucky guy

dockam profile image
dockam

That's Wonderful news Brother and really Awesome to have PSA undetectable for a significant time💙

And What a Gorgeous Couple you two are 😁

youtu.be/RtIl1CGRu4M?si=Lv_...

QoL on

Dance on

Love On

Congrats and Much Aloha and Love to you Both

Scout4answers profile image
Scout4answers in reply todockam

Thanks Randy

dockam profile image
dockam in reply toScout4answers

Awesome Brother, that could be a conversation starter - Make that Ripple💙

Had the frame made a few yrs ago as a PSA for PCa😜

QoL on

Dance on

License plate frame
fmenninger profile image
fmenninger

awesome. Congrats!

Scout4answers profile image
Scout4answers in reply tofmenninger

Thanks

Yzinger profile image
Yzinger

such great news.

Can someone expand on the statement of using DARO as a mono therapy and moreso that it can keep PSA low yet increase T?

MoonRocket profile image
MoonRocket in reply toYzinger

Darolutamide (Nubeqa), Apalutamide(Erleada) Enzalutamide(Xtandi), bicalutamide(Casodex) basically work my attaching to the Androgen Receptors thereby preventing T from attaching to the AR. So if one is not taking ADT ie lupron, Eligard, firmagon, etc, T is not suppressed and floats around the blood stream with little to do.

Yzinger profile image
Yzinger in reply toMoonRocket

but if T is not suppressed why then does it not raise our PSA?

Apologies if I am being thick here ;)

MoonRocket profile image
MoonRocket in reply toYzinger

The prostate cancer is Androgen driven (T). By blocking the AR Receptors, the T cannot bind depriving the prostate cancer of necessary fuel to grow. Simple explanation since the mechanism is complicated.

Yzinger profile image
Yzinger in reply toMoonRocket

Ok, so...drugs like Lupron stop the production of T from our balls - but, drugs like DARO stop the actual binding of T from the AR receptors?

MoonRocket profile image
MoonRocket in reply toYzinger

Correct. And if a man is on Abiraterone Acetate (zytiga), that works differently. It blocks an enzyme that is required for the conversion of lipids to T. The patient gets a deeper level of T suppression.

Yzinger profile image
Yzinger in reply toMoonRocket

Thanks - very interesting. I will try to remember this and see if it might be option for me down the road after Chemo

KocoPr profile image
KocoPr in reply toMoonRocket

All good info but I would worry about all that T floating around which I would think would funnel more down the aromatase pathway to create extra estrogens. I would definitely measure my E2 on a regular basis and the phase 1 estrogens and make sure they are being metabolized through the kidneys (urine test).

My estrogens just one month from PCa diagnosis in 2013.
mababa profile image
mababa

Scout4answers, I read through your bio, appreciating the care and detail used to chronicle your PCa progression and experiences. I’m stage IVa myself, diagnosed 8/2/23. Still fighting denial, but am scheduled to start something in February. My great concern is loss of quality of life just at a time when world travel and long hikes are my and my wife’s primary activities. Your recoveries of sexual function and zest for life are very important to hear and give me hope that recovery from ADT is possible. I have to be optimistic that the IMRT won’t overly damage my GI and urinary tracts. Anyway, you’ve inspired me to chronicle my own journey on this road for others to read, once it begins. Thank you!

Scout4answers profile image
Scout4answers in reply tomababa

Happy my profile was of help to you . I did it also so that I could remember the stops on my journey, as memory issues have been a side effect that hardly gets mentioned but for me is real. Fortunately my GF has been involved in every step and all discussions so she is able to tell me how I appear to the world as I have found it is much different from the inside.

I am willing to answer any questions you have. I would emphasize resistance training and all exercise as one of the best ways to overcome the side effects of ADT and radiation.

Do not stop having sex, It may not be great every time, but every now and then it can be awesome.

I wish you all the best in your journey.

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