Newbie - Introduction: My husband, age... - Advanced Prostate...

Advanced Prostate Cancer

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Newbie - Introduction

Frizzee
Frizzee

My husband, age 58, was diagnosed July 2016. PSA 477, Gleason 9.

Oncologist advised against any treatment. Urologist started with Firmagon, monthly.

He suggested Docetaxel - oncologist later agree and chemo treatment started - treatment was tolerated well. Different treatments were introduced:

Prednisone was added to the Docetaxel Flutamide was prescribed for 6 months.

Firmagon was replaced by 3 monthly Suprefact.

PSA at its lowest July 2018, 2.6. Started rising to 9.9 December 2018.

Xtandi was introduced. PSA January 2019, 6.6.

Hot flushes are terrible, but in general doing well, cycle everyday, training for Cape Town Cycle Tour March 2019.

15 Replies
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Great job

Darryl
DarrylAdministrator

Welcome

Boo, on the oncologist, who did not want to initially treat. You are in range of finding long term survival. Consider getting Gene Mapped, to Identify any Mutations, so that if any are in existence, certain drugs are now available, as agents against a few of the popular Mutations, that may be Identified. You did not mention anything about scans--there must have been---what was seen?

Nalakrats

Frizzee
Frizzee in reply to Nalakrats

They did a scan: enlarged lymph nodes were found. One lymph node affected the kidney, causing hypertension. Latest scan showed the lymph nodes shrunk.

I've read that many doctors in South Africa avoid treatments, particularly chemo. You may wish to look into the availability of Ac-225-PSMA-617. That treatment was used in a pilot study in S. Africa:

pcnrv.blogspot.com/2018/01/...

Frizzee
Frizzee in reply to Tall_Allen

Thank you so much - will have a look.

CalBear74
CalBear74 in reply to Tall_Allen

Please explain the medical reasoning of physicians who say no to treatment, as we see in Frizzee's situation. What could possibly justify that decision?

Tall_Allen
Tall_Allen in reply to CalBear74

I can't. There are some weird medical notions in S. Africa. There was much resistance to antiretroviral therapy for HIV there, even though S. Africa/Lesotho has the highest per capita incidence of HIV in the world.

Frizzee
Frizzee in reply to CalBear74

The oncologist explanation was that he should go home and enjoy a quality life as Chemo will not have any positve effect on his life.

Wow that is good progress ! Enjoy Cape Town !

You may want to find a different oncologist. Did yours say why he did not want to treat it when your hubby had a high PSA and Gleason score?

Frizzee
Frizzee in reply to Litlerny

The oncologist explanation was that he should go home and enjoy a quality life as Chemo will not have any positve effect on his life. He is avery experienced and well liked oncologist. However the urologist insisted, as my husband was otherwise in very good health. Yes, we did go to another oncologist - however the 2 oncologists did communicate before treatment started.

I was diagnosed with Gleason 9 at 58. Did IMRT radiation and full ADT. In remission for more than 10 years with Dr. Myers. At the time, I was doing triathlons. Dr. Myers told me to either ride a recumbent bike (which I don't like) or at least stand up every five minutes for thirty seconds to allow blood to flow. Still try to stand up on the bike as much as possible.

Roland

Your oncologist sounds like a lazy SOB. Why does he think any of the many treatments aren't good? What does he do while at the clinic if all he can say is go home and don't bother me?

Good on you for continuing training for the Cycle Tour; be sure to let us know how you do in it. We're rooting for you to win!

youtube.com/watch?v=Fh4j11g...

Have your husband run over the oncologist...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/16/2019 6:24 PM EST

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