Fluctuating testosterone levels while on HMT

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Bobby Mac
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Date Joined Mar 2016
Total Posts : 671
   Posted 10/5/2017 1:12 PM (GMT -7)   
Still having the fluctuating T levels while on Hormones - Can't get T level under 20- I stopped vitamin D as Allen thought may be the culprit.

Of course, I'm happy the PSA is undetectable!

My MO at Sylvester doesn't know why - only said if he had treated me from the beginning would have used Zytiga too.

I have sent my medical info to a top Boston MO and he will examine my info - and get back to me

6/7/17 PSA <0.1, Testosterone 34 (T lower but want <20)
6/26/17 PSA <0.1, Testosterone 25
6/30/17 Firmagon – 2 120 mg injections initial treatment
7/18/17 PSA <0.1, Testosterone 25
7/17 & 8/17 Firmagon 80 mg each time
9/21/17 PSA <0.1, Testosterone 48

Will go back to 3 month Lupron injections end of October - I was hoping Firmagon would do better.

Bobby Mac
Age: 69 at PC dx, PSA 6.7 Biopsy: 2/16 13 of 14 Positive, - RALP 4/16 Path:EPE, 2 + margins, Gleason 4+3=7, 50% of gland, Stage pT3a N1, nodes 2/10,+, 68 Ga PSMA 8/16 left node +, bed +, Lupron 8/16 - 6/17, Firmagon 7/17, uPSA 6/16, 2.41, SRT completed 12/16, PSA 6/2016, 2.6, 7/16, 2.2, 8/16 .6, <0.1. since 10/16, 1/17 T=43 5/17 T=34, 6/17 T=25, 7/17 T=25, 9/17 T=48

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8948
   Posted 10/5/2017 7:21 PM (GMT -7)   
It must be coming from your adrenals. If you can't get Zytiga, maybe ketoconazole will do the trick.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

Bobby Mac
Veteran Member


Date Joined Mar 2016
Total Posts : 671
   Posted 10/6/2017 6:10 AM (GMT -7)   
Allen, thanks - I'll ask my MO's about ketoconazole. Hopefully the Boston MO will get back to me today. He may want me to fly up there from Florida?

Have you heard of anyone else having this fluctuating T level issue?

Thanks,

Bobby Mac
Age: 69 at PC dx, PSA 6.7 Biopsy: 2/16 13 of 14 Positive, - RALP 4/16 Path:EPE, 2 + margins, Gleason 4+3=7, 50% of gland, Stage pT3a N1, nodes 2/10,+, 68 Ga PSMA 8/16 left node +, bed +, Lupron 8/16 - 6/17, Firmagon 7/17, uPSA 6/16, 2.41, SRT completed 12/16, PSA 6/2016, 2.6, 7/16, 2.2, 8/16 .6, <0.1. since 10/16, 1/17 T=43 5/17 T=34, 6/17 T=25, 7/17 T=25, 9/17 T=48

Tall Allen
Veteran Member


Date Joined Jul 2012
Total Posts : 8948
   Posted 10/6/2017 11:20 AM (GMT -7)   
I think a few guys on HW have mentioned it. I know you are anxious about it, but at least it doesn't seem high enough to increase PSA output of any remaining cancer cells.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog
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