ADT Effectiveness: I know everyone is... - Advanced Prostate...

Advanced Prostate Cancer

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ADT Effectiveness

JWPMP profile image

I know everyone is different. However, my understanding was that ADT could be effective for many years. I recently read a post that for metastatic men, it's usually only effective for months. I am deflated. My husband has been on 4 month Lupron since Jan 2021 and Abiraterone 1000mg since March. His original regimen was ordered for 2 years, but doesn't sound from what I read that it will be effective that long. Any feedback is appreciated.

His PSA has gone from 51.3 in Dec 2020 to 0.3 in May.. should get another test this week. Now I'm very scared of results.

Our RO has also been slow about getting him in to start his Radiation to the prostate. He said to expect a call the beginning of June. Nothing yet. The care coordinator yesterday said she will check into it and call...like she had no idea Jim's supposed to have treatment. And she hasn't called yet. Jim thinks if there was urgency they'd have us in there by now, so don't pester them. I'm panicking and want to pester them. If they don't radiate the lymph nodes does the prostate and bone met even matter?

Sorry this is run on, I'm very churned up right now.. i was actually more upset his coordinator didn't know about the RT plan than the delay itself.. The RO himself called us three times the end of May, then nothing.

Thank you all

Paula

37 Replies

Everyone is different. You can't read about someone else's experience and just imagine that will be your husband's experience.

Hello, Who says it is not working? A PSA that has declined from 51.3 to 0.03 makes me think it is working pretty well. As my oncologist has told me many times; once you get on the androgen deprivation train you stay on the ADT train. You might add things to the train and you might take things off the train but you stay on the train. If you get off the train you are back to square one! Good luck!

JWPMP profile image
JWPMP in reply to RyderLake2

He's actually 0.3 not .03, sorry about that.Yes it's working. But what I read is that for the majority of metastatic PCa men it only works for months, and we're approaching six months. My original impression was it could work for several years. So I was quite disheartened to read its generally months. And of course the one consistent theme I've read of this whole mess, is everyone is different. But I was hoping the scales tipped toward years not months.

Yes, my husband is resigned to staying on ADT. He says as unpleasant as it is, it's much better than the alternative.

Thank you very much

Fightinghard profile image
Fightinghard in reply to JWPMP

Every person is different glad to hear it is working right now

Try not to stress or worry too much

Just enjoy each day that God blesses you with

JWPMP profile image
JWPMP in reply to Fightinghard

Good words, thank you

Muffin2019 profile image
Muffin2019 in reply to JWPMP

I have been on ADT Lupron since 2018, told it is for life by my oncologist, now after on just Lupron my PSA went to 15.5 in 2020 so added arbitrone to bring it down to .8 which makes both of us happy. Luckily I have very small side effects, more intense hot flashes and a little tiredness that exercise takes care of. More important is that the train keeps going and does not run off the track, when this starts to fail at some point then back to chemo. My recent scans show no progression so I will take that and enjoy life.

ppulatie profile image
ppulatie in reply to JWPMP

Been on ADT for almost 5 years now. Lupron, Zometa, Casodex and then Xtandi. PSA was down to .29 last Friday. And when Xtandi finally fails, others to start.

redbank profile image
redbank in reply to JWPMP

I personally have been on Lupron for the past three years and it has worked for me holding steady at 0.05 mets to lungs and my last scan showed no cancer . It is different for everybody but stay the course and hopefully it works out well.

Amen to that! A PSA drop down to 0.03 PSA is a blessing that the PCa is in a dormant state. Don't wake that beast up. If it's working, don't try to fix it or worry too much about tomorrow. Everyday you are safe and have another day to enjoy!

There are many men who have been on ADT for ten years or more keeping their cancer under control. But on the average it works for about two to three years.

JWPMP profile image
JWPMP in reply to dac500

That makes more sense. Even though his original time frame was two years when it was with "curative intent" , and they didn't indicate they would shorten it when the bone met was discovered, and that wouldn't make sense if it only worked for months in most cases. Just have to take a deep breath and wait. My mind has been running away lately as we wait wait wait for next treatment.

London441 profile image
London441 in reply to JWPMP

Your anxiety is completely understandable, but at the end of the day it makes absolutely no difference except to your well being and that of your husband.

How long for me, how long? This question is posed all the time with regards to ADT and pca survival in general.

Yes 2-3 years is average but can be 10 or more easily.. Want to know where he falls in the range? Of course you do!

Sadly you can’t know, and you won’t until you do. However, once you begin to truly understand and accept this it will cease to be a cause of such worry.

Yes we are all different, but as you can see from the comments the common thread is there is no way to know how well or for how long we will respond to these treatments. The disease is truly Heterogeneous to the max.

Be strong as you can and lean on the experience here, it may not provide definitive answers but can be very therapeutic.

My husband was diagnosed with stage IV in 2004, surgery that December, and first Lupron shot February 2005. He's been on the 6 month dosage for many years now. He leads a normal life for being 72, still very active. He's in his 17th year with no Lupron vacations. His doctor is thrilled and so are we. Chin up. Live life. Stay as positive as you can. Aloha.

JWPMP profile image
JWPMP in reply to bluepacifica

Thank you! What kind words. I totally understand every case is different, but truly appreciate knowing the possibilities. Jim is Gleason 9 so I don't expect miracles or even exceptional results like yours, but it does seem several years, living life for a while and a positive outlook is possible. Thank you again.

bluepacifica profile image
bluepacifica in reply to JWPMP

Les, my husband, is Gleason 10. His prognosis was awful. They threw everything at him, things they didn't use back in 2004. He's had 3 years of Casodex, 7 weeks of radiation with additional beams directed at his tailbone which was full of cancer, 2 weeks of radiation on spots on his ribs, and a year of Zometa infusions. Now he just gets Lupron.

JWPMP profile image
JWPMP in reply to bluepacifica

Wow!! What an ordeal. Incredible results, so happy for you two! (well you know what I mean). Jim can only have limited radiation. He had testicular cancer in 1992 and they did radiation from his sternum to his thighs. He also has a metal hip replacement and a metal plate in his pelvis. So they won't radiate in his nodes, or his pelvic bed. They will radiate his prostate and his bone met.

Still, Jim's RT plan sounds somewhat similar to your husband's. What a road you two have had!

Anyway, hopefully that and the ADT will be sufficient for a while.

Thank you again, really appreciate hearing your story. Amazing

Just take it one day at a time. Advances are being made and survival rates are improving. Try not to dwell on it. Feel free to contact me anytime. We're retired and live on Kauai. (I think that helps, too!) Joy Franks

JWPMP profile image
JWPMP in reply to bluepacifica

What a beautiful place to retire!I visited Kauai with my Dad in 1982. Hanalei Bay, his friends raised Taro. Lived on a dirt road across from the beach. My Dad moved to Molokai and lived there almost 20 years.

Thank you so much for the wise words.

Paula

bluepacifica profile image
bluepacifica in reply to JWPMP

Yes it is a beautiful place to retire. The people are just as wonderful!! Oh, the taro farm is still in operation, owned by the same family. We live in Princeville, 1.5 miles from Hanalei.

JWPMP profile image
JWPMP in reply to bluepacifica

Love hearing that!!! 🥰

I have been told the average for Lupron and Casodex is 2 years, but for some men it can last up to a decade or even for their whole life. Everyone is different and it's impossible to predict, too many factors are involved.

There are a few of us that are using transdermal estradiol (tE2) as our only form of ADT with excellent results. Richard Wassersug (my tE2 mentor) has been using it for about 20 years and still has undetectable PSA's. I have been using it for over 3 years and my last PSA was 0.003. Some gynecomastia is my only side effect.

Hang in there, Paula, and DO PESTER them. Only you and your hubby can advocate and expedite as needed. God bless and keep you both...

JWPMP profile image
JWPMP in reply to sm60

Well I "pestered" It does sound like he slipped through the cracks and they are expediting. Appointment for set up Friday morning and they may be able to cut some time off the two week planning period. So relieved (and yes scared) Be glad to get this part done for now.

Thank you

treedown profile image
treedown in reply to JWPMP

Lesson learned, its not a popularity contest. Stay on top of them, you probably doing them a favor anyway.

JWPMP profile image
JWPMP in reply to treedown

Thank you! I really thought I was being obnoxiously persistent and they were just hoping I'd go away.Wrong! The tricks my mind plays.

Yes, lesson learned. I'm sure I'm the "least popular " patient's wife ... I've pestered all his doctors since last August...hoping I can take a break from the advocate role for a while and just go with the flow. I get a little wound up 🙄

treedown profile image
treedown in reply to JWPMP

Your husband is lucky to have you fighting for him. Sounds like he would have a much harder time getting adequate care where your at without you!

JWPMP profile image
JWPMP in reply to treedown

He might have done better without his overreactive wife, but he's stuck lol. UCSF is where we started and they are Very responsive, but I had a million questions and why's...his Radiation therapy is being done by a local (Modesto CA) RO that is working with the Drs at UCSF, and that's where the ball got dropped. but the train seems to be back on schedule now, and seems I was freaking out for nothing.

Sure happy to have this group and real life experiences and people to be encouraging And DIRECT when necessary. thanks again

Looks to me like you are doing well.

I wouldn't worry until you have something to worry about.

Get some second opinions, including sbrt radiation treatment vs imrt radiation treatment.

JWPMP profile image
JWPMP in reply to cesces

He actually is going to have SBRT to the bone met. EBRT to the prostate. Thank you!

J, I feel your desperation. The waiting is so hard. My husband has been on Lupron for 7+ years following surgery and radiation. It worked for 5 years, then he had Provenge immunotherapy and added Xtandi when it was complete. It's all had its challenges and I know tough times are ahead. If I learned anything over the last 8 years since his diagnosis, it's to not waste energy worrying about what's to come. Enjoy today. There is a lot to be hopeful about. That said, I know how difficult that is. Wishing you all the best.

JWPMP profile image
JWPMP in reply to Yank66

Such a great perspective. Worrying is so exhausting and this is going to be a much rougher road if I don't get a handle on my thoughts/reactions. And none of that improves the situation one iota.Thanks for sharing. I appreciate it a lot.

Those first few months are so very hard - you read all the reports and only remember the bad ones. My husband at at 4.5 years on Lupron/Zytiga and has a stable psa of .1.

In those first few months I was sure I would loose him within 2 years, and here we are, about to start his 5th year which, according to stats, he had only a 20% chance of reaching.

Mindfulness can help. And this is from a realist (who is more of a pessimist! LOL).

I'm a moderator for a FB group called: Women Affected by Stage 4 Prostate Cancer if your interested at some point and time. It can be hard to read, but there is a lot of support.

Sending positive thoughts and prayers!

JWPMP profile image
JWPMP in reply to Union98

Lol!!! I've done waayyy too much reading about stuff I don't understand. Probably time to dial it back for a while. Glad to find a "kindred" realist (though I have a wild imagination ugh). Yes these initial months are hard and hope I learn to roll. PSA tests once a month since March and his fourth is coming up and my heart pounds wildly each time.thanks for the offer of the group, I may look in at some point.

thanks so very much.

I have been on Lupron and Casodex since diagnosis in 2012. The Casodex was stopped in 2016 when we moved to Florida and the Lupron has continued. My current PSA is 0.05. I had been warned it would be effective for 2-3 years. I am a Gleason 8. I was metastatic and, therefore, a prostatectomy and/or the radiation was off the table. You may find my previous posts on natural supplements of interest.

JWPMP profile image
JWPMP in reply to CalBear74

yes I will check in to your posts, I totally believe natural supplements can be helpful for so many things!thank you

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