On the Possible Advantages & Dangers ... - Advanced Prostate...

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On the Possible Advantages & Dangers of Making Certain Dosing Decisions

SeattleDan profile image
9 Replies

According to Pylarify PSMA scan at beginning of 2022, I am mCSPC (lymph nodes only, but beyond oligo), and am now on the oral ADT antagonist Relugolix (Orgovyx) and Apalutamide, both of which my oncologist recommends that I stay on for as long as they work for me. I’ve also been fortunate enough to be eligible for the manufacturers’ cost assistance for both meds this year, but that is not guaranteed to be available in 2023 and even with Medicare and supplemental, there is some degree of financial toxicity to be concerned about. So though I know it likely is at best an art rather than science, I wonder what others are actually doing on a day to day basis with dosing to spread out the supply of meds. (So far, my onc has said that he does sometimes recommend a partial dosage of the pricy Apalutamide, but no specifics beyond that). For example, what if I were to take 3 rather than 4 Apalutamide pills per day, and to take a once-a-week Sabbath break on my daily dose of Relugolix? Is this tempting fate and unwise? Might it actually help me stay castrate sensitive even longer? What do you guys think?

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SeattleDan
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9 Replies
Tall_Allen profile image
Tall_Allen

Do not miss Orgovyx doses - testosterone returns very quickly.

SeattleDan profile image
SeattleDan in reply to Tall_Allen

Recommendation noted and appreciated

watertender profile image
watertender

Apalutamide may significantly reduce the blood levels of relugolix, which may make the medication less effective in treating your condition as it may reduce the plasma concentration of the relugolix.

At least this is what my MO has indicated to me, you may want to ask next time you speak to your MO. I am on Orgovyx only and had asked about apalutamide. Good luck with your treatments.

SeattleDan profile image
SeattleDan in reply to watertender

Thanks. I had seen commentary that theses two meds did not cohabit well, but my MO thought I’d do well with both (I had preferred Daralutamide to Apalutamide because of better blood-brain barrier, but insurance refused it). I do take the A in the morning with breakfast, and the Orgovyx in the late afternoon…

MateoBeach profile image
MateoBeach in reply to SeattleDan

FDA has relatively recently approved Nubeqa for metastatic hormone sensitive PC. You could ask your MO to have insurance denial reconsidered in light of that.

Look for a possible trial of Lu-PSMA (Pluvicto or equivalent) for mHSPC. With PSMA positive lymph-node only disease you may be in a good position to benefit from that. Going abroad is another option but would be entirely out of pocket.

Personally, I would consider half dose of any AARI drug (whether enzalutamide, apalutamide or darolutamide) as long as your PSA is not rising on it. But no skipping Orgovyx. Many will disagree.

SeattleDan profile image
SeattleDan in reply to MateoBeach

Thanks. Glad to at least have some options!

tayninhtom profile image
tayninhtom

When first taking Erleada, potassium rose to 5.9. The MO had me stop for four days. Then I resumed the four pills every evening. Potassium again rose, but only to 5.5. The MO took me off for another four days. Potassium returned to normal. The MO then had me take three pills per day because my body weight is only 145 pounds. After months on the drug, kidney function is normal. By the way, you can get the meds through the VA if you have ever been in the service. I get mine for free.

SeattleDan profile image
SeattleDan in reply to tayninhtom

Interesting. That didn’t happen to me, but I did become hypothyroid on it.

tayninhtom profile image
tayninhtom in reply to SeattleDan

yeah, it’s such a new drug there’s a number of unknowns. Another guy in my neighborhood is on the same regimen and is not affected in any way other than additional sleepiness. Of course he weighs twice what I do.

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