Good news from my side as well !!

[whatsinaname]

Hi Guys,

My PSA test results taken today morning came in at 5.32 down from 7.35 (10 days back). I have completed 2 sessions of chemo and the third is scheduled on the 4th of December. Over the last 45 days or so, my PSA levels have fallen from 9.40 to 7.35 to 5.32. Nothing to rave about but at least the levels are headed down.

What do you guys think ?? If the PSA levels continue to fall a) should I take the full 12 cycles of chemo as my main MO has advised or less 2) If not, then what ?? 3) After chemo, what next ?? Zytiga or Xtandi ?? When should I begin either ?? 3/4/5 weeks after chemo gets over ??

Many thanks for any reply you may care to give.

[Tall_Allen]

It's working and that's what counts. Why give up on something that's working? You didn't have high PSA to begin with, so maybe it's not your best biomarker - how's your bone ALP?

[whatsinaname in reply to Tall_Allen]

Excellent points, Tall_Allen. Very perceptive. Phenomenal memory as well.

Yes, my PSA levels never ever exceeded 16.51 and that was in Jan, 2018 before treatment even began.

My bone ALP levels are 90, where the range is shown as 30-120. So fairly OK, I would think ?? I have had this test taken only once on the 8th of October, 2018. Should I take it more often ?? How often ??

Thank you very much, Tall_Allen for your invaluable inputs.

[Tall_Allen in reply to whatsinaname]

I think they should track it along with your PSA. So far, everything looks good!

[whatsinaname in reply to Tall_Allen]

Thank you, Tall_Allen. I am indeed fortunate that you are on this site and reply to my queries. Thanks again, much obliged.

[Hidden in reply to Tall_Allen]

Good morning:

What is bone ALP?

Thanks

[whatsinaname in reply to Hidden]

Google "alkaline phosphatase" (ALP) for succinct answers to your query.

[Hidden]

Follow thru . Why stop early . You need to kick it’s ass now.. That’s Your best bet. Fire with fire friend.. Hang in there.. you don’t want to quit early and it comes back with a vengeance.That would be bad.. This is Heavy on your body and mind during the holidays. Hopefully after the treatment pushes it down and you recover , then and only then can you regroup....Always say to self” I’m going to make it” Heal yourself any way you can I pray in a few months that you’ll be flying under the radar..with me and others here that attempting keep that sucker in our rear view mirrors until a cure is found.

[whatsinaname in reply to Hidden]

Thank you, Lulu700, for the encouragement.

[Hidden in reply to whatsinaname]

We’re all in the same boat.. Do anything to not think about APC all of the time.. Get thru and live with appreciation for life.. In A few months you should have the beast eating out of your hand.. That’s the plan ... Happy turkey day.. Let’s all take that day off from freakin Pc.. Take it easy..

[whatsinaname in reply to Hidden]

Thanks again, Lulu700, for the great attitude.

Happy Thanksgiving Day to you and your family !!!

[Hidden in reply to whatsinaname]

Very kind, thank you... Peace and strenght to you and yours in this time of testing...

[Shooter1]

Started with PSA of 64 after RPP, up 10 pts from before surgery, not a good sign. Lupron brought it down to 6.8 in 6 weeks. Then chemo. brought it down 25% per cycle until #4. Went back up between 4 & 5. Added Xtandi at that point. Before # 6 dropped 25% again. Went for 9 treatment with all 3 drugs until side effects forced stop in chemo treatment... 4 1/2 mo. later I was a invalid from Xtandi excess toxicity. Cut dose and after 75 days off work was able to return. Now taking 90mg average dose and PSA still dropping. Add as soon as PSA starts back up or you finish your Chemo. whichever happens first. Hit it hard now while you can. Current PSA 0.119, Retired, and in remission. Good luck.

[whatsinaname in reply to Shooter1]

Thank you, Shooter1. I really have got to find out why my MO's do not even consider Zytiga ot Xtandi alongwith Chemo.

Thanks again, much obliged.

[tallguy2]

I agree with the other men, hit it hard now! Then a PET scan with Axumin will help you understand what remains, if it's even detectable. Let's see what that PSA number is at the end of the chemo.

Great news, happy Thanksgiving!

[whatsinaname in reply to tallguy2]

Thanks for the information, tallguy2. Yes, I am going to thrash this issue out with my MO's over the next few days.

Happy Thanksgiving to you and to your family !!

[Schwah]

I would go straight to lupron and Zytega as soon as you can. That’s what I did. But it hard and early.

Schwah

[whatsinaname in reply to Schwah]

I agree, Schwah. Now, I've gotta get the quacks to agree I'll do my best, for sure.

Thanks again for the repeated reminders to bash it hard and early. Your advice might have just saved my life or, at the very least, added years. Very grateful to you.

[Hidden in reply to whatsinaname]

Congratulations! Stay with it as long as you can keep your other vital blood work numbers positive and as long as you can handle the side effects! Stay strong! Have hope!

[whatsinaname in reply to Hidden]

Thank you very much for your good wishes, RickW.

[Litlerny]

Great news! Very happy that it’s working for you. Like the other guys I support hitting it hard now. My Jax Mayo MO wasn’t in favor of using Zytiga and chemo at the same time, at least not in my particular case. He felt the additional benefits of using them together (again, in my specific case) would not be enough to justify the additional side effects, and since the chemo did so well (PSA undetectable, testosterone <7, bone tumor resolved) I might want to save the Zytiga for later. but it’s worth discussing with your MO. Bless you, and have a happy Thanksgiving.

[whatsinaname in reply to Litlerny]

Thank you, Litlerny, for the differing view. The differing view is invaluable, imho.

Thanks again and here's wishing you and your family a very Happy Thanksgiving.

[TomNew62]

I’ve had good success with XTandi. My PSA had risen to 13 and now .00

[TomNew62 in reply to TomNew62]

I would stay with whatever they tell you.

[whatsinaname in reply to TomNew62]

Thank you very much, TomNew62. Your views are much appreciated.

[larry_dammit]

I’m not a doctor, I listen to mine ,that said. Diagnosed August 16 stage 4 with Mets. Started chemo 6 rounds with Neulasta kicker next day, prednisone with the chemo. Shots of lupron and Xgeva monthly. 24 months on Xtandi as of yesterday, Two schools of thought as I hear it. Short round of chemo and the cancer drug ( Xtandi) leaving room for mor chemo later. Or. Go all the way with chemo then cancer drug. Ask your doctor what the difference might be. Fight the good Fight. 🙏🙏🙏

[whatsinaname in reply to larry_dammit]

Thank you very much, larry_dammit. I will sit with my MO's and figure this out.

Thanks again for all the help and advice.

[monte1111]

I get psa, alk phosphate, blood counts, liver, and etc. once a month. 2 vials. Takes 2 minutes after the 20 minute waiting for my turn. I go online and see the reports in one day. Except psa as they won't put that online for some ungodly reason. I've got extensive bone mets so I watch my alk p. like a hawk. Its come from over 200 after 1st chemo flare to about 71. Your number of chemos may shift. Mine went from 8, then 6 (you are to old to handle 8 - 68 yrs) back to 8, then 10, and finally 8 because of my response. Beginning psa 59.9 - 1.7 before last chemo. Started Xtandi 1 week after chemo. Was couch potato for 2 weeks after 8th chemo plus start of Xtandi. 15 months on Xtandi. Psa has slowly declined to 0.2 Have been told to expect Provenge when Xtandi fails. (Lupron, Xtandi, Xgeva, Celebrex and Gabapentin). Had Zarzio shots after about 2nd chemo (similar to neulasta) for low white blood cell counts - made legs ache for 3 days. Peeing discomfort went away 1st week of chemo, night sweats went away 2nd or 3rd chemo (that was lymph nodes). I do have very annoying foot neuropathy , Gabapentin did nothing for that but reduced hot flashes. Also a very annoying pot belly. Since you only have a few mets hope this knocks it back for many years.

[monte1111 in reply to monte1111]

Also taking prednisone.

[whatsinaname in reply to monte1111]

Thank you very much for all those details and the encouragement, monte1111, much obliged to you. I will pay more attention to my alk p. in future.

Your post is so filled with relevant details that I am going to take a print out of it and file it away. Thanks again, monte1111. All the very best to you.

[Shooter1 in reply to monte1111]

Pot belly and foot neuropathy are two of of my complaints too, but still kicking.