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Normal Testosterone after Three Months HDT

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Posted 5/8/2018 8:42 AM (GMT -7)
Very nervous here. My testosterone level came back from my GP at 613 after three months on Eligard, HDT. And I'm a Gleason 9/10.

I read that a small subset of guys on HDT are resistant. Anyone experienced with this?

I have calls in to my RO and urologist to discuss next steps, which I expect will not be pleasant.
DX Dec 2017 at Age 68
PSA six months before DX: 3.6 PSA at DX 6.6, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-26-18 start IMRT Virginia Hospital Center
CLL in remission after six months targeted chemo
My Blog: https://donsreluctantcanceradventure.wordpress.com/
Posted 5/8/2018 9:36 AM (GMT -7)
Obviously, a question for your doctors. But while we wait to see what your doctors say, a few non-medical-expert ideas:

You might consider a retest. Labs make mistakes... not very often but it happens.

Eligard is injected with a polymer that quickly sets up to form a solid lump (depot) from which the drug diffuses out gradually for several months. The polymer is mixed right before it is injected. If the polymer doesn't set up right or spreads out too widely before it sets it might release the drug too quickly and run out before the scheduled time. There could have been a problem with your first injection.

Eligard (brand of Lueprolide Acetate) is a GnRH agonist. It works by a rope-a-dope action on your GnRH receptors. It stimulates them to signal the need for more and more testosterone. More! More!! MORE!!! and, after a while, your pituitary says "The heck with this." and stops listening, shutting you down completely. There are other drugs that are GnRH antagonists. They work by stopping up the ears of your GnRH receptors directly rather than shouting constantly to deafen them as GnRH agonists do. One of those drugs might be the next thing to try. I think Firmagon (brand of degarelix acetate) is the most common brand name in the US.
65 Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2nd opn. 7(3+4)), 4 neg
DaVinci 6/14/12. "some" nerve sparing on left
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adj IMRT 66.6 Gy 10/17/12-12/13/12
8/2012-3/2015: Incont., Trimix, VED, PSA<0.015.
AUS & IPP installed 3/5/2015
Forum Moderator - Not a medical professional
Posted 5/8/2018 9:51 AM (GMT -7)
What is your PSA? Has it reduced?

Generally the initial reaction to the drug is a spike in testosterone followed by a reduction to near 0. If your T is that high, then your PSA should be up as well. Your PSA will start falling after the T has dropped very low, generally under 50. I am amazed that your T is so high to begin with at your age and after three months of Eligard.


My Psa became undetectable within about 100 days of my shot, but we didn't measure T at that time because the PSA was undetectable. At a later reading my T was 3.


The resistance you refer is when the cancer is resistant to no T. In other words, the cancer grows in the absence of T, meaning it is getting food from other sources. That is not your situation. That your T is so high after the shot, it appears to be resistant to Eligard. I vote for a retest. I assume you are getting another shot of Eligard this month so it may be that you will take longer to get the T knocked out.
PSA 59 on 8-26-2010 age 60. Biopsy 9-8-2010 12/12 positive, 20-80% involved, PNI in 3 cores, G 3+3,3+4,and 4+3=G7, T2b.
Eligard and Jalyn started on 10-7-2010. IMRT to prostate and lymph nodes started on 11-8-2010, HDR Brachytherapy December 6 and 13, 2010.
PSA < .1 since February 2011. Located in Cumming Georgia north of Atlanta
Posted 5/8/2018 1:08 PM (GMT -7)
I've never heard of a non-response to leuprolide, but what PDA says sounds reasonable. Retest seems like a good next step. If T is still elevated, maybe try Firmagon and see if that works. If you have something wrong with your hormone feedback system, they can try 150 mg Casodex (+10 mg tamoxifen) instead.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
•SBRT 9 yr onc. results •SBRT 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
Posted 5/12/2018 11:34 AM (GMT -7)
Here's an update. My Urologist retested my testosterone. He found the same result as my GP: My levels are over 600 almost four months after my first Eligard injection.

"In my 30 years of giving this drug, I've never seen this before," my urologist told me. My RO and RO nurse also admit they have never seen this before. Great. I have Elite Status. A medical mystery. One for the record books. The urologist has the batch number of the vial and is checking with the drug company. I'd like to find out if my resistance to the drug is due to a bad batch or to my own body mounting a last-ditch effort to say: "No, we won't let you take our manhood without a fight."

In the meantime, I suppose the cancer cells have been gorging on a testosterone buffet and growing fat. Hopefully, any cancer cells are still contained with my prostate and getting zapped by the 44 radiation treatments.

I will start Firmagon next week. It's a monthly injection in the abdomen. The first shot is a double and I suspect is not pleasant. Trying to keep positive.
DX Dec 2017 at Age 68
PSA six months before DX: 3.6 PSA at DX 6.6, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-26-18 start IMRT Virginia Hospital Center
CLL in remission after six months targeted chemo
My Blog: https://donsreluctantcanceradventure.wordpress.com/
Posted 5/12/2018 12:03 PM (GMT -7)

Explorer54 said...
In the meantime, I suppose the cancer cells have been gorging on a testosterone buffet and growing fat.

It really doesn't matter if your T level is 150 or 600 -- all of your androgen receptors are saturated at low levels of T. More T doesn't activate them any further.

A lot of guys report injection site reactions on the first two Firmagon injections. Have the nurse ice the area before and after - it may help. If Firmagon doesn't work, they should write you up as a case study.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
•SBRT 9 yr onc. results •SBRT 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
Posted 5/12/2018 12:25 PM (GMT -7)
Thanks. I start Firmagon next week. I'll let you know if I become a case study. Hope not.
DX Dec 2017 at Age 68
PSA six months before DX: 3.6 PSA at DX 6.6, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-26-18 start IMRT Virginia Hospital Center
CLL in remission after six months targeted chemo
My Blog: https://donsreluctantcanceradventure.wordpress.com/
Posted 5/13/2018 6:39 AM (GMT -7)

Explorer54 said...

I will start Firmagon next week. It's a monthly injection in the abdomen. The first shot is a double and I suspect is not pleasant. Trying to keep positive.

Explorer,
Like others here I think there might have been something defective in your Eligard or its administration. I suspect you will have better results from your Firmagon shot next week. As for your worry about the shot itself I hope my experience last week with my first Firmagon shot can allay your worry.

I had my first Firmagon shot -- actually two shots last week. Like you, I was worried anticipating the expected pain of the shots. I thought I was maintaining my James Dean "never let them see you sweat" cool, but my blood pressure on check-in gave me away. My usually normal BP set a new record of something like 155 over 80 -- though it was back down when the nurse practitioner checked it again 1/2 hour later.

As for the shots -- first the good news - they really didn't hurt. The nurse pinched some belly fat. For the first time I was grateful for actually having some belly fat. She did the second shot about six inches away from the first one. The shots felt no worse than a typical jab in the arm for a blood test. Really! Even though the Firmagon has to be injected slowly - about 20 seconds -- there was no sensation of the fluid going in. As for the less good news - the next morning I had a burning sensation across my belly. I told my wife it felt like I came in second best in a knife fight, but it was probably more like a couple of bad bee stings. Tylenol took the edge off and once I was up and moving around I got used to it. It felt that way for two days. By day 3 the pain had cranked down by at least half. By day 4 I hardly felt it at all. To give the pain a number I'd call it maybe a 4 or 5 on a scale of 10.

All in all, the experience was not nearly as bad as I had expected. And since these initial shots total 240 milligrams and future treatments are single shots of only of 80 milligrams, this should be even more tolerable going forward.
Jim
Age 72
-2002-PSA 9.4, 5 of 10 cores positive - 30-50%.
-RP 2002. PT3B N0 MX Gleason=7 (3+4), 75% left lobe; small focus rt lobe.
-PSA low of 0.01; slow rise to 0.4.
-SRT 2010. One lymph node targeted. Casodex during SRT
-PSA 0.00 thu 2014;
-0.02 Oct '14; 0.04 Apr '16; 0.51 Jan '17; 2.46 Jan '18, 4.19 Apr '18; 6.62 May '18
-Firmagon May '18 in control group of clinical trial

Post Edited (Bohemond) : 5/13/2018 7:59:26 AM (GMT-6)

Posted 5/13/2018 7:10 AM (GMT -7)
Yours does indeed sound like an unusual case. I wish you good luck dealing with your apparent ADT resistance, and with your perfect 10. It sounds like you've had to deal with one thing after another... which is why the last two lines of your signature piqued my interest.

My older brother was a quiet, thoughtful, sensitive Buddhist who lived alone at his own Walden pond in rural Indiana. He read a lot and enjoyed his rescue dogs (named Ralphie, Wally and Emerson). He was the one who taught me at an early age the skills of fixing things, which became a passion and a livelihood for us both.

In late 2009 I learned that he had been diagnosed with CLL. He looked awful as he went thru treatment, but was eventually declared to be in remission. The last time I saw him we were both visiting our mother in the hospital. We very nearly had dinner together... a sorely missed opportunity. Ten days later he was gone, from causes most likely unrelated to his CLL and chemo, though one can never be sure.

That was my first exposure to cancer, though I now suspect that our father may have had cancer when he passed thirty years ago but never told anyone. Oh yeah, my maternal grandfather died from prostate cancer when I was 13, but one tends to only remember glimpses of the past at that age.

So reading your blog I see that your diagnosis and treatment for your blood disease started in late 2015. I'm trying to recall just where my head was around then. My wife finally retired in Oct 2015 and we began our relocation to our retirement condo in Florida. Things had already started getting crazy in late 2013 thru early 2014 when I had a failed biopsy and my urologist seemed to be fighting me rather than helping me.

Christmas 2015 was a sad experience I wish I could forget. A few months later I had an MRI and another biopsy and the rest is outlined in my sig below. But by the next Christmas 2016, just a few months after my prostatecomy, my wife was diagnosed with diffuse large B call lymphoma. The three ring circus that ensued as we both dealt with our cancers was the most trying time of my life. 2017 was consumed with chemo, radiation and surgery. When it rains it pours.

So I ended up writing more here than I intended. My blog can be accessed under RobLee on the Cancer Survivors Network, or by clicking on the little house icon to the left, or at CancerCoupleBlog.com if you're interested. Good luck to you going forward Don. I get the sense that this leg of your journey has only just begun, but it seems you've been down a similar path before and can handle whatever you may encounter.

Those three words will not be uttered here.
2014-15: PSA's 9, 12, 20, 25, Neg DRE's, false neg TRUS biopsy
6/16: MRI Fusion biopsy, Right Base, 2x40% + 2x100% G8(4+4)
8/16: DaVinci RP, PNI, 3 foci EPE, 11 LN-, 53g 25% involved, BL SVI, T3b n0m0
1/17: started 18 months Lupron ADT, PSA's ~.03
5/17: AMS800 AUS implanted, revised 6/17
8/17-10/17: RapidArc IMRT 39 tx (70 Gy)
1/18, 4/18: PSA's 0.00, Dx Radiation Colitis...
Now what!
Posted 5/13/2018 12:13 PM (GMT -7)
I used Firmagon after Lupron got my T level below 50, but didn't get T level below 20. It didn't do the trick, then for some reason went back to Lupron and T level went <20.

URO, MO & RO didn't have a clue why that happened.

Firmagon injection wasn't that bad - area hurt some for a few days.

Bobby Mac
Age: 69 at PC dx, PSA 6.7 Biopsy: 2/16 13 of 14 Positive, - RALP 4/16 Path:EPE, 2 + margins, Gl 4+3=7, 50% of gland, Stage pT3a N1, nodes 2/10,+, 68 Ga PSMA 8/16 left node +, bed +, DECIPHER .85, 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. T< 20 since 12/17
Posted 5/13/2018 4:43 PM (GMT -7)
Why isn’t the triple blockade prescribed? LGRH Agonist(lupron etc.) , antagonist (casodex) and AR5 receptor (avodart)
Bob
DOB January 1944
8/’12 PSA 2.7; 5/’13, PSA 6.6 (actually double due to finasteride)
7/’13 Bx GS 4+5=9, 2 of 6 cores, 10%, 40%; stage Pt1c
9/’13 ORRP, pathology GS 4+5=9, EPE and margin+ at base (4mm, GS7), BLSVIs+, 10 lymph nodes resected (clear); stage upgraded to Pt3bN0M0
11/’13 - 5/’14, PSA 0.1 to 0.3
6/’14 SRT by IMRT/IGRT (68.2 grays/38 Fx) to prostate bed, ADT (6 months Lupron)
9/’14 - 8/’15: PSA: <.1, to 1.2
9/’15 MRI, CT-PET finds two iliac lymph nodes suspicious for PCa; started 13 months of ADT3 (Lupron, bicalutamide, dutasteride) plus plus metformin, cabergoline, estradiol patches, prolia , vitamin D3, calcium. IMRT/DART (75 grays/50 Fx) to pelvic lymph nodes. Stopped ADT3 11/’16.
11/’15 - 5/’17: PSA .03 to 2.3.
2/’17: Rx finasteride added
5/’17: F-18 Fluciclovine (axumin) PET/CT scan finds 9 mm femur met. Restart ADT3; start monthly Xgeva, stopped finasteride.
6/’17 SBRT via IMRT (27 grays/3 Fx) to femur met.
6/’17 - 10/’17 PSA <.1; 1/18, .175
Posted 5/14/2018 7:13 AM (GMT -7)
Explorer54,

Injection site reactions with Firmagon are fairly common, especially with that first double shot, but as Bohemond reported the shots themselves aren't usually that bad. It's the reaction the next day that gets you. In my case I found that over-the-counter pain relievers and mild profanity were all I needed to get by.

The reaction to subsequent shots is milder. I only did firmagon for a few months but the discomfort was brief. I never did quite get used to the palpable lump, like someone had concealed a beauty-sized bar of motel soap under my belly fat. But it wasn't painful.
65 Slow PSA rise 2007-2012: 1.4=>8
4 bxs 2010-2012: 1&2 neg, 3 pos 1/14 6(3+3) 3-4% (2nd opn. 7(3+4)), 4 neg
DaVinci 6/14/12. "some" nerve sparing on left
Path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
24 mo ADT3 7/12 - 7/14
Adj IMRT 66.6 Gy 10/17/12-12/13/12
8/2012-3/2015: Incont., Trimix, VED, PSA<0.015.
AUS & IPP installed 3/5/2015
Forum Moderator - Not a medical professional
Posted 5/14/2018 7:26 AM (GMT -7)
Thanks, guys,
I plan to take a Valium and an ice pack with me on Wednesday when I get my double dose of Firmagon. And RobLee, special thanks for sharing your story. I take inspiration from the journey that you and your wife have been on.
DX Dec 2017 at Age 68
PSA six months before DX: 3.6 PSA at DX 6.6, Biopsy: 3 of 12 pos. G5+5, 10%; G5+4, 15%; G3+5, 35%
MRI and CT no evidence of metastases
ADT Eligard, quarterly, start Feb 2018
3-26-18 start IMRT Virginia Hospital Center
CLL in remission after six months targeted chemo
My Blog: https://donsreluctantcanceradventure.wordpress.com/
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