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Is there an end to this train ride? and how will they know?

Posted by lacraig1 @lacraig1, Dec 9 9:52am

I had my prostate removed in April. My PSA wasn't zero but rapidly rising.
So I am on ADT (Lupron and Zytiga) and will start radiation tomorrow.
But then what?
What will it take for doctors to say that you are cured? Or even in remission?
Will I be seeing oncologists and having PSAs the rest of my life?

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lacraig1 | @lacraig1 | Dec 16 8:16am

I didn't want to get on the train. I knew there were no stops. I like all the people at my oncologist's office and the radiation center, but still.

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jrs619 | @jrs619 | Dec 17 10:44am
In reply to @ecurb "@lacraig1 I think your statement here is correct. For a pun: we’re not on the Midnight..." + (show)
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@lacraig1 I think your statement here is correct. For a pun: we’re not on the Midnight train to Georgia: We’re on the Back to the Future train to a cliff, with No hoverboard.

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Ha that’s about it. No turning back now. All ahead engines full

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jrs619 | @jrs619 | Dec 17 10:48am

Don’t worry it is a shock of reality. Being honest with you I felt the same ups and downs. You’ll get used to it. 20 years and counting

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Jonesfit65 | @jonesfit65 | Dec 17 11:00am
In reply to @kbrz "@bonanzaman Always request the "Cash" price." + (show)
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@bonanzaman Always request the "Cash" price.

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@kbrz I had been looking @ GoodRx.com for many years, when my husband was first put on ADT in 2021, to see where I could get our meds locally for the cheapest, or mail order. We started out about $300/mo & ended up paying about $130 in early 2024. I finally talked the Dr into trying him off it. Just recently asked to try being off the Lupron, also. None of our Drs ever hinted about being cured or in remission. We have to take the bull by the horns, it seems! Oh, and that goes for the pharmacies, too!

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jimgaudette | @jimgaudette | 6 days ago
In reply to @lacraig1 "so the train doesn't stop until the passenger dies." + (show)
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so the train doesn't stop until the passenger dies.

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@lacraig1 Usually, but as long as you are alive, you can be grateful for what you do have and enjoy every moment.

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bryanta | @bryanta | 6 days ago

High, Medium, Low grade of biopsy should indicate the path forward.
Am unlucky to have high grade both in Lymphoma and prostate cancer.
annual ct pet scan and 3 month genetic tests and how I feel will see things returning.
Sorry for your suffering. Might find a cancer support group.

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ganway | @ganway | 5 days ago
In reply to @bryanta "High, Medium, Low grade of biopsy should indicate the path forward. Am unlucky to have high..." + (show)
Profile picture for bryanta @bryanta

High, Medium, Low grade of biopsy should indicate the path forward.
Am unlucky to have high grade both in Lymphoma and prostate cancer.
annual ct pet scan and 3 month genetic tests and how I feel will see things returning.
Sorry for your suffering. Might find a cancer support group.

Jump to this post

@bryanta

Get the best oncologist you can find

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jimgaudette | @jimgaudette | 5 days ago
In reply to @jonesfit65 "@kbrz I had been looking @ GoodRx.com for many years, when my husband was first put..." + (show)
Profile picture for Jonesfit65 @jonesfit65

@kbrz I had been looking @ GoodRx.com for many years, when my husband was first put on ADT in 2021, to see where I could get our meds locally for the cheapest, or mail order. We started out about $300/mo & ended up paying about $130 in early 2024. I finally talked the Dr into trying him off it. Just recently asked to try being off the Lupron, also. None of our Drs ever hinted about being cured or in remission. We have to take the bull by the horns, it seems! Oh, and that goes for the pharmacies, too!

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@jonesfit65 I have been off Lupron and Abiraterone for 15 months. My PSA has remained “undetectable”. I do understand that the cancer can return and I may need to go back on, but I am right now just hoping that my testosterone comes back enough to limit or stop the side effects. Many of the side effects are from low testosterone, not ADT.

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Jonesfit65 | @jonesfit65 | 5 days ago
In reply to @jimgaudette "@jonesfit65 I have been off Lupron and Abiraterone for 15 months. My PSA has remained “undetectable”...." + (show)
Profile picture for jimgaudette @jimgaudette

@jonesfit65 I have been off Lupron and Abiraterone for 15 months. My PSA has remained “undetectable”. I do understand that the cancer can return and I may need to go back on, but I am right now just hoping that my testosterone comes back enough to limit or stop the side effects. Many of the side effects are from low testosterone, not ADT.

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@jimgaudette I know, it's a pitiful shame!! It does so much more than you know what! Thanks so much for sharing. We don't go for PSA check till Feb & then every 3mos. Please let us share progress reports over the time it takes to come back? We plan to go a whole different route when & if it does!

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jimgaudette | @jimgaudette | 4 days ago
In reply to @jonesfit65 "@jimgaudette I know, it's a pitiful shame!! It does so much more than you know what!..." + (show)
Profile picture for Jonesfit65 @jonesfit65

@jimgaudette I know, it's a pitiful shame!! It does so much more than you know what! Thanks so much for sharing. We don't go for PSA check till Feb & then every 3mos. Please let us share progress reports over the time it takes to come back? We plan to go a whole different route when & if it does!

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@jonesfit65 Last week I had my blood tested.
Testosterone 93
PSA undetectable

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