My experience with hormone treatment - Advanced Prostate...

Advanced Prostate Cancer

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My experience with hormone treatment

31 Replies

Been on zoladex and zytiga for 21 months. psa was 2700 and now .o33. I am 72 years old.

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31 Replies
Tall_Allen profile image
Tall_Allen

Great response!

in reply toTall_Allen

I was looking death in the face and was told to get my affairs in order. The radiology oncolologist promised 12 months pain free with Zoladex and the medicine oncologist promised more time with zytiga. So here I am. The ontario gov. does not help with Zytiga until stage four but because the cancer is through all my bones and lymph nodes the drug company is giving it at no cost. I do remember the pain and am not looking forward to the day it returns. I am not afraid to die but I am afraid of the pain.

ctarleton profile image
ctarleton

WooHoo!!

SPEEDYX profile image
SPEEDYX

Into the mystic..Van Morrison....keep it down!!!

in reply toSPEEDYX

It's a marvelous night for a moondance! Thank You

Wonderful!

Kaliber profile image
Kaliber

Good for you, hang in there .

💪💪💪💪👍👍👍🌻🌈🌼🦋🌸🌵🌵

treedown profile image
treedown

Wow

Damirm profile image
Damirm

Congratulation keep forward , my father 76 old PSA 5800 before 1 month fall to 14 .

DarkEnergy profile image
DarkEnergy

I was diagnosed with PSA 1000+ with extensive lymph nodes, pelvic and spine metastasis. Had a tumor extending from my prostate, invading the bladder, the pain and blood while urinating was horrible.

After two years from above, now, PSA <0.02, no symptoms, my Oncologist has agreed to stop ADT, I'm so excited to feel normal again. Hormone Therapy (AKA Castration) is hell, but it's better to live another day...

in reply toDarkEnergy

I get hot flashes about every 35-40 min with sweats. Put on a few inches at my waist. The biggest side effect is the development of many secondary feminine attributes. It now feels like I am looking through the eyes of both a male and female. Being in a male body with no male hormones is actually a very interesting experience. I must have a high natural estrogen count.

ctarleton profile image
ctarleton in reply to

I sometimes look at it as no longer being so "testosterone poisoned" after living over 50 years in that condition. I did some glorious things living with the testosterone. I did some really stupid things while driven by the testosterone. At my original diagnosis in my mid-60s I had a testosterone of 908 and a ridiculous PSA around 5,000. I'm 72 now, 7 years later.

I also once quipped decades ago during a celebration dinner for a (mostly lesbian) women's soccer team that maybe I was a lesbian trapped in a man's body. We all had a big laugh at that, including my future wife who also played on that team with her friend.

At our age with advanced prostate cancer, I've found similar things in common with some women who are also on hormone-related treatments for their cancers, and also, of course, with all older women who ever had hot flashes during menopause.

I'm doing much better now with saying simple things like, "I'm sorry. You were right, and I was wrong." I still have some "mansplaining" tendencies, but my Dear Wife still keeps calling me on it. She cuts me a lot of slack for the advanced, incurable cancer and all, but she does have her limits. Ha. Ha.

God, I love her!!!

Bodysculpture profile image
Bodysculpture

That's a very good result let's keep that going

ctflatlander profile image
ctflatlander

Great results!

Magnus1964 profile image
Magnus1964

Hugh response. Have you had any scans? What is your Gleason score?

in reply toMagnus1964

I have had two bone scans, two ct scans and one mri. I only know my psa level. I go for blood work every two months and the dr. gives a pain consultation and tells me my psa level. Last one was 0.033. The lowest was 0.0019.

Magnus1964 profile image
Magnus1964 in reply to

Great, I take it the scans are clean.

in reply toMagnus1964

The bone scans showed the hot spots and the second one was done after a few months into the therapy. It showed that the cancer had not advanced any further. The mri showed that my internal organs at that time where free. I really don't know anything about the ct scan.

Magnus1964 profile image
Magnus1964 in reply to

Sounds like your doing good.

Healer73 profile image
Healer73

I at 75 also am on Lupron & Zytiga at 21 months. At my diagnosis PSA was 3,193 and now it is 0.01. Also have Mets on total spine and pelvic girdle. Had palliative radiation of spine & shoulders and Proton pencil beam to ablate the Prostate and Prostate bed. So, keep up the good work and enjoy each & every day.

in reply toHealer73

So far I have had no radiation. Just hormone therapy. I have slight pain but do not know if it is arthritis or the therapy. I do not know if there is any extensive damage to my bones other than they are full of cancer. So far my internal organs are ok.

j-o-h-n profile image
j-o-h-n

Greetings c-m,

Please tell us your bio. Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)? Thank You!!!

All info is voluntary, but it helps us help you and helps us too. If you do respond copy and paste it in your home page for your use and for other members’ reference.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/09/2020 6:29 PM EST

in reply toj-o-h-n

I can say that I am on zoladex injection every three months. I take 1000mg zytiga daily along with 5mg prednisone. Before I started psa was 2700 and was 15 after a month then down to 5 after another month then down to 0.5 after the third month. I dropped lower through the months but rose the last time but is still below zero. I am at almost 22 months on this treatment. As for the other info I will keep that to myself

j-o-h-n profile image
j-o-h-n in reply to

Thank you for your quick and detailed response. Of course keeping that "other info" to yourself is what we mean by "all info is voluntary" and it's yours to withhold. Keep up the good work and post here for lots of helpful info and camaraderie...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/09/2020 6:55 PM EST

in reply toj-o-h-n

I would like to add something hopefully for people with open minds. My oncologist will not listen and cuts me off. I have found that having no male hormones in my body I feel much better about myself. In my research into Zoladex I have found that it is also used in the UK for transgender male to female hrt. I guess over there they understand Gender Dysphoria better than here in North America. I have spent my whole life trying to understand what was wrong with me. Now it took being on treatment for prostate cancer and researching the treatment to find the terminology related to my life long question. Gender Dysphoria is a very real thing and I can testify to that. Born in 1948 and growing up in an Italian catholic community there was no information about such things. So I have felt like a total freak all of my life. So there is a certain plus side to my having cancer. I will die knowing .

MateoBeach profile image
MateoBeach in reply to

Thank you for sharing that perspective so clearly. It is valuable to recognize that. I was terrified of losing my male sexual identity from ADT. Now, after experience over time I feel quite comfortable and at peace with myself with castrate T levels and no libido. And realize I am still a man, perhaps a better one, and still deeply loved and in love with my wife. We share a wondrous and adventurous life while the fight against APC continues. Paul

j-o-h-n profile image
j-o-h-n

Born in 1948 and raised in an Italian catholic community really meant that the closet doors were locked tight. Well now you don't have to feel like a freak and all it took were some nasty tiny genes to make you feel the way you should have these past 72 years. I believe that every cloud has a silver lining. So be yourself and laugh that you won one for a change. My next question is only because I live in NYC and hung around "Italian neigborhoods". Where were you brought up..... No need to answer if you don't want to.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/09/2020 7:25 PM EST

in reply toj-o-h-n

Niagara Peninsula, Ontario, Canada

Thorold where the steamships climb the mountain

I am not Italian but everyone else was

j-o-h-n profile image
j-o-h-n in reply to

Geez and I though that everyone in Canada was either British or French.... (shows you how much I know)....

Here’s a cute one (hopefully you don't know it)...

A big burly man is in a supermarket in the US and he is eyeing the melons.

A young American stock boy walks past the burly man. The burly man says to the stock boy "excuse me son where are these melons from?" The boy says "from Canada? and I always thought that the only thing that have in Canada is prostitutes and Hockey players"

The burly man says, "better watch it kid my wife comes from Canada".

The boy says, "err err oh what team does she play for?"

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/09/2020 7:50 PM EST

in reply toj-o-h-n

Many Thanks

Jbooml profile image
Jbooml

I have a theory if your interested. Osteoblastic APC (OBPC) is much more responsive to hormone treatment.. that’s it

I had a late Diagnosis with sky high PSA and crashed to undetectable with mostly non visceral OBPC...dumb luck

One thing ..don’t know if it’s somehow related

High normal K+....Which I wonder contributed to a kidney stone I recently passed...oooouuuch.

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