Repeat Please?: I am on firmagon... - Advanced Prostate...

Advanced Prostate Cancer

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Repeat Please?

spencoid2 profile image
16 Replies

I am on firmagon, abiraterone and prednesone. My next shot is tomorrow.

Today I feel great. I took my usual 3 mile bike ride to the mailbox. This is my test, I know exactly what gear and what boost from my ebike I need to get up the very steep hill (down is easy) I did really well on the bike and actually did some power pedaling. That would not be possible even a few days ago.

Is this likely to be because my T has risen? I hope to get it tested tomorrow. I guess I will know a few days after the shot. If it is not rising T I need to figure out what I did right. I am still having hot flashes but muscle weakness and instability is virtually gone. Short term memory is really bad still, in fact it is getting really bad.

So I still have side effects but why have the muscle issues disappeared?

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spencoid2 profile image
spencoid2
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16 Replies

It's unlikely that your T has risen at all, and very unlikely to a level that would give you more endurance, muscle strength, etc. Don't know how long you've been on ADT, but the side effects are somewhat cumulative. It does help to exercise though so that makes a difference.

It's a real possibility you'll forget yesterday so focus on today.

Schwah profile image
Schwah

Highly unlikely your T went up that quickly to any significant extent. You said you’ve got bad short term memory still. Maybe the muscle weakness didn’t disappear. You just forgot. Just kidding. Stop over thinking. Enjoy that you’re feeling better. Exercise is the key elixir my friend. We all have good days and bad. Enjoy the good and fight thru the bad.

Schwah

spencoid2 profile image
spencoid2 in reply to Schwah

So I should work on worsening my memory. Whatever happens I won't remember. Sounds like a plan. Now what was that plan?

Jvaughan0 profile image
Jvaughan0

Hope is the force that moves us toward tomorrow. It contains no knowledge of the future, only the determination to seek higher ground in a storm. It is a gift that we must give ourselves, often without reason. What you did right was to pedal to the mailbox.

jtspitfire profile image
jtspitfire in reply to Jvaughan0

What a wonderful statement. May I share it with others (of course not the last line :) ?

Jvaughan0 profile image
Jvaughan0 in reply to jtspitfire

Of course, but the real wonder may have been in the last line.

spencoid2 profile image
spencoid2 in reply to Jvaughan0

Yes pedaling to the mailbox is my challenge as long, as I accept it I am not accepting defeat.

louschu profile image
louschu

I seriously cycle at least 100 miles a week. I'm on daily Firmagon and have been on Lupron before. My T stays at undetectable.

spencoid2 profile image
spencoid2 in reply to louschu

Never heard of daily firmagon. I get monthly shots. Impressive biking. I live in the mountains, 100 miles would be a real challenge. Did that when young living in SF. Lots of places to bike nearby. Biking was my main form of transportation. I created a bike map That is still published. It shows the grade of every block. Biked hundreds of miles measuring streets. Got to see pretty much all of the city

louschu profile image
louschu in reply to spencoid2

Daily firmagon is a pill called Orgovyx. Was fda approved in January.

spencoid2 profile image
spencoid2 in reply to louschu

i think my MO might have mentioned this but there was some reason i am getting shots? Any idea what that might be? My next MO visit is in a few weeks? Can ask

louschu profile image
louschu

Insurance maybe. Its medicare part D. Starts out expensive then dropped with my plan. I had to push my doc. I think Firmagon has fewer side effects but hate the sub q injection

spencoid2 profile image
spencoid2 in reply to louschu

it was not likely insurance we have supplemental that covers pretty much everything, must have been side effects? will ask MO. BTW Firmagon is "billed" at some outrageous rate and insurance pays a significant part of that, I pay almost nothing. However when I was in Paris and need a shot I paid with no insurance coverage (not even worth submitting even though we have international coverage) genuine name brand Firmagon was something like $100. We sure have a fucked up way of supplying drugs. We pay our taxes for development of drugs and then get screwed with the highest prices in the world. I am seriously considering moving to Paris (Dad has a great apartment) when my father passes (he is 95 but will probably outlast me) and if Covid allows us.

louschu profile image
louschu

This is treated as a prescription which also affects how your dr is compensated

spencoid2 profile image
spencoid2

i sure hope that is not the reason. if he can give me no other reason that makes sense i am changing MOs.

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