12 Years of Lupron

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PreacherMan12
Regular Member


Date Joined Jul 2013
Total Posts : 54
   Posted 9/14/2013 12:09 AM (GMT -6)   
Anyone been on or know of others with longstanding Lupron treatments? Seeing some things from father and trying to determine what side effects it may be causing. Seems to be a long time and there is much negative around on the damage it does. Not wanting to jump to conclusions but curious if others are seeing mental and emotional issues with long term use.
My father:
DX 2001 in Lymphnodes
2001 Lupron shots
2008 Taxotere and Lupron continued
2011 Bone mets in Spine, no leg function, Radiation cleared up, cont Lupron
2011 Sept - Zytiga until Oct 2012,Lupron
2012 Nov-Dec Provenge and Lupron
7/2013 - PSA doubled to 8 in 3 months, Scans clear cont Lupron
8/2013 PSA now 11, start Xtandi in Oct if MRI clear

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3136
   Posted 9/14/2013 7:12 AM (GMT -6)   
Wow that is long term use, the average duration especially on higher risk scenario patients might be 17-24 months before failure to control psa happens. Long term not only memory loss of probably epic proportions, but you have to worry about bone density issues that could even lead to fractures that could end up being debilitating. You should find out if he had bone density checked, like Dexa scan and such or did he get anything to assist bone density???? The mental effects of these LHRH drugs can happen in a short time period, low T leads to emotional changes and undermines being the Spartan like warrior that most men like to think they are (ha-ha). Ruining ones sex drive turns out to be an unwelcome side effect.

Others can add to the effects and fun of being on this type of drug.

Dreamer44
Regular Member


Date Joined Jul 2013
Total Posts : 199
   Posted 9/14/2013 9:33 AM (GMT -6)   
My husband had been on lupron for 11 years, first 4 were 3 mo injections. He had many of the side effects, fibromyalgia, migraines, osteoporosis, arthritis, and with low T lack of libido, enlarged breasts, weight gain. It did keep his psa low after radiation and seeds. After 4 years he decided to try intermittent lupron injections whenever his psa would rise above 5. The SE were a little better with intermittent injections, and the longest he went without injections was 6 months. He thought he fejt better using the monthly dosage rather than the 3 mo dosage. His T stayed well below 50 until he failed lupron. Docs tried 2 other HT drugs, neither was effective. The short story is that he had a long run with lupron and that delayed his more aggressive metastatic HRPC.
Husband dx at 48 in '94; Gleason 7; radiation, seeds, lupron, casodex, etc. HRPC 2011;
PSA 80, lymph, bladder, bone mets; surgery for bladder mets, PSA 100;
chemo Feb - June '12, PSA 40;
Provenge Sept '12. PSA 917 in Dec ;bone mets on skull cause nerve compression & vision problems; started xtandi and brain radiation; PSA drop to 18;
PSA 88 July '13; PSA 150 Aug '13, Stroke dx, start Zytiga

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 1684
   Posted 9/14/2013 12:48 PM (GMT -6)   
Rock Star Todd1963 was on Lupron for some seven years before going to Provenge. Don't know if he still is in it.

Last year we had a member post for a few months that had been on Lupron for ten years at that point.

I am completing three years this fall.
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 and Testosterone less than 3 since February 2011

PreacherMan12
Regular Member


Date Joined Jul 2013
Total Posts : 54
   Posted 9/16/2013 9:55 PM (GMT -6)   
Thank you all! Dad failed the therapy years ago but his Dr was of the mindset that it could be slowing things down, so keep on. Grantedthis decision was 7 years ago. His new Dr seems to think the same way. We children are now seeing some strange mental things and are wondering of it could be the shots among everything else. He has had every med avail and been in two trials over 12 years.

With Xtandi warming up in the bullpen, we are concerned about the side effects with it lumping in with all this other stuff! Just trying to get a read and will probably be pulling the Med Power of Att out and meeting with the Dr. privately.

open to any and all suggestions!
My father:
DX 2001 in Lymph and pelvis
2001 Lupron and Casodex
2008 lung, Taxotere and Lupron cont, stop casodex
2011 Bone mets in Spine, no leg function, Radiation cleared up, cont Lupron
2011 Sept - Zytiga until Oct 2012,Lupron
2012 Nov-Dec Provenge and Lupron
7/2013 - PSA doubled to 8 in 3 months, Scans clear cont Lupron
8/2013 PSA now 11, start Xtandi in Oct if MRI clear

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 2315
   Posted 9/16/2013 10:41 PM (GMT -6)   
My Urologist told me that after being on Lupron for more than 3 years, the effect becomes permanent. Few men can come back, especially older men..The pure, drug-free form of "Hormone Therapy" is physical castration. This is the cheapest and most effective form of HT...But since someone else usually pays for the Lupron, few men opt for that form of hormone therapy..

Since Lupron causes all kinds of expected zero testosterone reactions, any more subtle side-effects associated with the drug itself are overwhelmed by the expected ones.....For those who will be on HT for the duration, maybe orchiectomy is a better choice as there are no side-effects caused by the drug itself...
Age 70
PSA age 55: 3.5, DRE normal.
age 58: 4.5
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA <0.1 10/'11, <0.1 2/12, <0.1, 4/12 <0.1, 9/12, 0.8 3/13, 0.5 6/13, 1.1

LupronJim
Veteran Member


Date Joined Apr 2013
Total Posts : 1172
   Posted 9/17/2013 2:29 PM (GMT -6)   
Fairwind said...
.....For those who will be on HT for the duration, maybe orchiectomy is a better choice as there are no side-effects caused by the drug itself...


The side effects from low to no testosterone are still present with physical castration, but not the on going costs or the other Lupron induced SE's.

PreacherMan12 - how old is your father? While some of the mind related issues may be due to the Lupron, some of it may just be the normal aging process that often leads to dementia symptoms if one lives long enough.

As someone who just started Lupron in march of this year, it is good to hear testimony from you and from Dreamer that this may be a viable option for a double digit number of years for some people.

Not really surprised that the IMT did not persist for more than about 6 months, but every litter bit helps

LupronJim
65 - DX 64 Feb 2013 PSA 3.68 (6 mo doubling) Gleason 9 (4+5)

T1CN0M1B stage IV w. 7 of 12 cores worst ones 70% right perineural Invasion PNI

oligometastatic 5 tumors 1 right sacroiliac, 2 thoracic vertebral bodies (spine), 2 right posterior ribs

1st Lupron 4 month 3-28-2013, 2nd Aug 1
PSA 3.68 down on 07-08-13 @ 0.2, T=24

UF & Shands treating w curative intent, not just palliative.

LupronJim

Post Edited (LupronJim) : 9/17/2013 1:32:06 PM (GMT-6)


PreacherMan12
Regular Member


Date Joined Jul 2013
Total Posts : 54
   Posted 9/17/2013 2:38 PM (GMT -6)   
LupronJim,
Dad will be 74 in November. We think the signs he showing are too early for normal aging difficulties. There is zero family history with such which leaves us to think that it must be med related. My curiosity has been that with the failure of the HT 5 years ago +, the side effects may be too risky for the questionable benefit. But as several have pointed out, those effects may be locked in.
My father:
DX 2001 in Lymph and pelvis
2001 Lupron and Casodex
2008 lung, Taxotere and Lupron cont, stop casodex
2011 Bone mets in Spine, no leg function, Radiation cleared up, cont Lupron
2011 Sept - Zytiga until Oct 2012,Lupron
2012 Nov-Dec Provenge and Lupron
7/2013 - PSA doubled to 8 in 3 months, Scans clear cont Lupron
8/2013 PSA now 11, start Xtandi in Oct if MRI clear

Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 2231
   Posted 9/17/2013 4:27 PM (GMT -6)   
I been on lupron for 87 months. I had a bone density test a few months back. My bones are in good shape. I did Provenge and stayed on lupron. Now I am on Zytiga and still on lupron. Now my T- Level is zero and the hot flashes are the worst.. I have night sweats and zero libido.
DX 2006 age 42 PSA 3216 stage 4 Gleason (3+4=7 ) Lung, Bone, and Lymph metastasis
A.D.T. 5-1/2 years. Provenge, Zytiga, D.E.S.
Latest Bone scan, C.T. scan, and chest X-ray clear. Current P.S.A. 6.52
Currently 49 years old
Todd's blog

MsWorryWart
Veteran Member


Date Joined Aug 2011
Total Posts : 1339
   Posted 9/17/2013 6:24 PM (GMT -6)   
My husband has been on Lupron and Casodex for 2 years, with Zytiga added after the first year.

The drugs definitely affect his mind. He's still sharp as a tack, but in the last 6 months, his memory and concentration are just not where they used to be.

Then again, I haven't been on anything and my memory and concentration now stink too. I'm thinking stress also plays a huge factor with mental wellness.
Husband DX 49 yrs old - T4,N1,M0
07/11 - PSA 57.0 - BX -7 of 11 cores positive - all 80% -G7 (4+3)
8/4/11 - MDA-G8 - 3 Positive LN, SV, & Bladder - BS Clear
8/12 - Degarelix & Casodex -9/8-1st Lupron
01/12 - Taxotere 3 cycles
01/12 -PSA .1
06/12 IMRT
09/24/12 - Zytiga
12/12/12 - PSA .02!
03/21/13 - PSA .07 Just a blip!

Determined to "LIVE ABOVE CANCER!"
HOPE FLOATS & LAUGHTER RULES! :)

tednsal
Regular Member


Date Joined Sep 2012
Total Posts : 225
   Posted 9/22/2013 11:39 PM (GMT -6)   
PreacherMan12....husband has been on Lupron & Trelstar for the last 13 years...off only about 10 months in 2004. First Lupron every 6 months (2000-2004), then as the cancer progressed, now every three months (Trelstar). I agree about an orchiectomy, but this doesn't stop the testosterone levels and it isn't good on the "male ego". SE: Breast enlargements, hot flashes, fatigue, bone loss (process slowed by taking calcium 1200 mg per day & Vitamin D3). Don't know about memory loss, husband hasn't had any to mention, but has "that selective memory and hearing impairment" that all you men have at one time or other....:)

See signature...looks like same pathway thru this disease....except husband hasn't been at Zytiga, but that may be what's in the future....
Age:55:PSA 10.9 11/99
GS:left:3+3=6/right:4+3=7
RP:Johns Hopkins 04/00
RT:37
5/00 to 11/06 PSA 0.1-stop HT 01/04
PSA:0.16- 9/04 Lupron
PSA: 2.1 - 9/09 Casadex & Lupron PSA down
PSA 4.3 - 9/11 Bone & CT mets skull,ribs,illiac, sacrum
& right fenur
Provenge 12/11-01/12
Xgeva & Trelstar
Stage 4
PSA 06/12-196 taxotere; PSA 01/13-44.30
Xtandi:1/13
PSA: 2/13-13.20;4/13-12.71;5/13-13.41;
7/13-21.41.

PreacherMan12
Regular Member


Date Joined Jul 2013
Total Posts : 54
   Posted 9/23/2013 3:12 AM (GMT -6)   
tednsal,
Wow-the journeys are similiar! My father did extremely well on Zytiga. Actually worked longer on him than norms according to the trials. The Provenge appears to be a zero read. With all the hype, we are now wondering of it was really worth it. We may never know. The steriod really helped with energy and just simply feeling better.-big plus with Zytiga. Xtandi seems to be next for him. Did your husband experience the fatigue etc with it. Anything you can share about it would be greatly appreciated!

The Lupron appears to be handled identical. We just cannot seem to get a read on what is causing the mental and emotional changes. I am now thinking that it could be a combination of meds and just long term battlle of Pc.

Hang in there!
My father:
DX 2001 in Lymph and pelvis
2001 Lupron and Casodex
2008 lung, Taxotere and Lupron cont, stop casodex
2011 Bone mets in Spine, no leg function, Radiation cleared up, cont Lupron
2011 Sept - Zytiga until Oct 2012,Lupron
2012 Nov-Dec Provenge and Lupron
7/2013 - PSA doubled to 8 in 3 months, Scans clear cont Lupron
8/2013 PSA now 11, start Xtandi in Oct if MRI clear
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