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Still not on ADT again - should I be worried?

Posted by briang1958 @briang1958, Aug 8 3:05pm

Been away for a while, this is all too depressing for me.
My new Clinical Oncologist did another PETScan and found 4 additional metastasis foci, says 2 are too far north to zap, 2 are too close to previous Photon Beam and 39 Salvage treatments.

PSA still rising, meeting with him next week. He thinks we should still wait on ADT seeing ans my previous experience was so terrible.

See chart - should I be worried?

I know if I went back to Mayo the RO would zap me in a heartbeat.

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Jeff Marchi | @jeffmarc | Aug 10 11:26am
In reply to @deccakid "Yes, I have questions about continuing ADT as well. I've posted here before: 68 Y.O., started..." + (show)
Profile picture for deccakid @deccakid

Yes, I have questions about continuing ADT as well. I've posted here before:
68 Y.O., started with stage lll, dd the external radiation coupled with Casodex and Eligard. I knew immediately that the ADT compromised my CV system...narrowly avoided heart failure and subsequently moved to Firmagon. Even with Firmagon, it affected my CV system, narrowly avoiding a stroke....

There have been times I've suspended the Firmagon after Chemotherapy (Taxotere) because I knew the combination was overloading my body. I've gone 3 months without ADT at times and BP and blood sugar returned to normal.

I continued the Firmagon after the PSMA-PET scan showed metastasis yet again (L4 and the prostate gland itself) and subsequently added Pluvicto infusions. Here I am again: the Pluvicto seems to be effective but the combination with Firmagon once again caused me to suspend the Firmagon. It's been 2 months off Firmagon and 3 infusions of Pluvicto. I'm due for a 4th Pluvicto soon and have to decide whether to continue Firmagon or any ADT...I will s/w my oncologist re: Estradiol.

Bottom line, it seems that everyone reacts differently to these (continued) combinations and, eventually, must make their own decision based on the efficacy of the combinations coupled with the body's reaction...mine always seems to be CV issues...

Prayers are with all of us!!

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@deccakid
Have you considered using Orgovyx Instead of Firmagon. It’s supposed to be better on the heart. Are you on a blood thinner so you don’t get a stroke? Sure can relieve the anxiety.

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briang1958 | @briang1958 | Aug 10 1:02pm
In reply to @jeffmarc "@briang1958 Definitely go to Mayo in Minnesota and speak to Dr. Heath. She is a really..." + (show)
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@briang1958
Definitely go to Mayo in Minnesota and speak to Dr. Heath. She is a really great oncologist that speaks at many meetings and is really loved by her patients. You would have the best options for treatment from her.

You might want to ask about using estradiol instead of ADT. That can avoid a lot of the side effects you had but also work to reduce your testosterone. It definitely sounds like you need an ARPI, Darolutamide would be the best.

Get yourself a really good oncologist, One that specializes in prostate cancer. You have a very advanced case and you don’t want to encounter the pain that prostate cancer can cause if left untreated.

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@jeffmarc

Got an appointment with Dr. Heath next week. Feeling better already, thanks again Jeff.

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deccakid | @deccakid | 6 days ago
In reply to @jeffmarc "@deccakid Have you considered using Orgovyx Instead of Firmagon. It’s supposed to be better on the..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@deccakid
Have you considered using Orgovyx Instead of Firmagon. It’s supposed to be better on the heart. Are you on a blood thinner so you don’t get a stroke? Sure can relieve the anxiety.

Jump to this post

@jeffmarc
Thanks Jeff. Yes I have considered it and the Oncologist has as well, but in the past I've had incidents of nasty chronic diarrhea (life-threatening low potassium and high creatinine) with pills that I won't take any pills anymore. My bowels are working very well now and I like to keep them that way...Perhaps another of my body's quirks...apparently.

BTW, No incidents of constipation with Pluvicto...Dry sinuses and throat...incredible tiredness, of course, but nothing else.

At my treatment stage it seems I'm extremely sensitive about certain combinations...More to keep a watch...

Blessings

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