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Waiting for the Numbers...
Hello folks.... I am just back from the Dr and have been told that after 31 days on Orgovyx and Abiraterone my T is 20 and PSA is 2.8, down from 435 and 55.8. So looks like the ADT is working and right now the side effects are not impossible to deal with. Actually lost 5 lbs. What is more interesting is the information I gathered on this site helped me read the biopsy and pet scan results with more understanding.... here is what I learned: out of 14 needle cores 12 were positive for cancer, 9 were 4+3=7, between 60% an 95%, cribriform present in all 9. 3 were 4+4=8, all 3 100% and all 3 had cribriform present. 2 needles were benign. The pet scan: 16 (between 5 and 10mm) nodes showed uptake between 10 and 35 SUV. Of the 3 Drs that saw me during the first several months not one sat down and explained what this meant. I think it is safe to say I have a serious case of pc.... I am a good example of a bad example...lol. I am here to thank all of the people that helped educate and encourage me to get started on the ADT. I was dragging my feet, holding on to my old life instead of jumping into my new one... Dr today told me I would be tested every month, in a few months have an MRI and then another PET Scan. What lies ahead? ADT until it quits working I would guess, then perhaps chemo? Idk. Pretty happy everyday right now, I feel good, am active and enjoying life, pc sure gives a person a different view point; the moment you hear "you have cancer" everything changes.
I come here everyday to read of the travails of some and the successes of others, I am grateful for my relatively uneventful experience. Any thoughts or opinions are welcome and again, thank you all who commented to my posts and thank you to all those that post their experiences here.... good and bad.
"Misery loves company, as long as its good company" Lol....thats from a book I read about pc cancer.....thanks for reading this post...
Ill be reading yours!
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Hi and welcome to the club!
My husband got diagnosed a year ago with PSA almost 300! No symptoms other than peeing a lot and some ED but we had a lot of stress in the family so we didn't think much about that part.
But the PSA results triggered a pelvic CT scan which showed cancer outside the prostate then urologist biopsy and most Gleason scores were 8 and 9, my husband said he felt like he got raped with a broom handle!
Then a long wait for oncologist and urologist had said he'll probably have to do ADT! My husband would rather die than lose his manhood! I was furious, at the cancer and at him! Who cares about a hard on...I'd cut off my boobs if needed, I've given birth to 4 children and I'm now late 40s so my body is surely not the same! He finally relented. But first he got a psma pet scan and it looked like he lit up like a Christmas tree! It was everywhere!!! Prostate, pelvis, bones, spine, lymph nodes, lungs!!! He was ready to die!
Oncologist said two different ADT plus chemo would give him 30,% chance to make it 5 years!
He started firmagon injections and continued those monthly instead of switching to lupron (didn't like the side effects he's read about) then zytiga daily pills and last summer he did 6 rounds of docetaxel chemo and did fine!
ADT makes him weaker and tired but that's also lack of testosterone. He goes to the gym every morning and does weight training.
He eats pretty perfectly.
Now his PSA is 0.12 I think and pet scans are much better but not gone. Stage 4 doesn't have a cure (yet)
He's still here and I'm happy about that.
Gabapentin helped for hot flashes but he got cross eyed once for several minutes and got freaked out and stopped it.
He's not in pain. Still pees frequently and sleeps terrible but that might also be because of hot flashes.
He's 56 now.
It all sucks but it's brought him closer to the Lord and to me, though I'm still mad at God...
@jeffmarc
Jeff, thank you for taking the time to comment. I am on ADT and ARPI (Orgovyx and Zytiga), 2 months now and am pretty happy with the way the numbers are going....I am now researching Xgeva, which I am supposed to start May 29th. I have made an appointment with the dentist to talk with him about dental concerns and will start taking D3 and Calcium in anticipation of going on the Xgeva.
I am thinking of getting a second opinion, just to be sure I am on the right track.
Learning that I am considered "palliative care" was sobering, to say the least. I guess I knew that, but seeing it in writing drove the point home. Might take a couple days to get back to my foolishly optimistic self, lol but I will. Have a good day everyone, Im getting outside for a walk in the woods..........and thanks for the hugs and likes, I do appreciate the kind thoughts you send.
@stage4lovolmetpc
Good to hear you have that combination of drugs. That should keep things under control for a while.
It’s starting, of course they want you to do everything with your Teeth because of the osteonecrosis risk. The only thing they like you to do is get your teeth cleaned.
Not sure if they’ve mentioned it to you, but After two years on Xgeva you can get one Infusion of Zometa and it is supposed to lock in all the benefits that Xgeva Has given you. Ask your doctor about this, though there’s no hurry.
That second opinion could make a difference, Or maybe you are getting the best treatment. You haven’t mentioned where you live, might be able to recommend some places to go if we knew what city.