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Eligard is Failing Me What is this ?

 
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sequoiaranger
Regular


Joined: 05 Nov 2007
Posts: 24
Location: Ramona, California

PostPosted: Mon Nov 05, 2007 3:40 am    Post subject: Eligard is Failing Me Reply with quote

I don't even HAVE a prostate anymore--BIG, aggressive tumor yanked out too late, and now metastasis. I gotta supress testosterone so my cancer has nothing to feed upon. I chose the hormone therapy drug "Eligard" that turns off testosterone production.

I got a "6 month" Eligard shot at the end of May and in June, a month after my Eligard shot, my PSA came back "imperceptible" and although I did not have a testosterone level test, my libido was DEFINITELY repressed to zero (What *IS* that thing between my legs, and why do I need it??). Then in early October (4 months from injection) I noticed a return of libido, and sure enough, I tested at 350 ng/ml testosterone (full "normal" testosterone levels for a man my age--59), and my PSA was up to .4

WHAT HAPPENED?

According to available literature and my urologist/oncologist's experience, testosterone levels should stay supressed much longer than six months with a "six month" shot of Eligard. Either there is still Eligard in my system and my body is somehow rejecting or ignoring it, or it's not there at all and has been somehow metabolized (or incorrectly marked as to dosage in the first place).

Am I unique, or is there something else going on? I have heard of a "placebo" Lupron scandal a few years back involving diluting or "cutting" the drug to make someone a profit.

Forum Feedback??

Makers of Eligard, are you listening?
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brainman
Site Admin


Joined: 13 Oct 2005
Posts: 4214
Location: Tennessee

PostPosted: Thu Nov 08, 2007 2:07 pm    Post subject: Re: Eligard is Failing Me Reply with quote

Hi, I am so sorry about your health concerns. Since I have never had Prostate Cancer nor used Eligard, I do not know if I can help you any. However, it sounds like you are just looking for someone to listen to you as much as anything else and I can certainly do that. I can actually to more... I can sympathize with you. I can only imagine how devastating Prostate Cancer is to anyone with it.

Did you get your Eligard from a reputable pharmacy or over the Internet? It really does make a difference as to how much trust you can put into the product you are using. However, I assume you are getting it from a pharmacy, so that is just a rhetorical question that you do not need to answer.

I have read a couple of other posts about men with higher than expected PSAs who also had total resection of the prostate with no signs of metastasis. I do not think they ever found the reason so I cannot even commend on that other than to say that their PSAs were about 10 (if memory serves me correctly).

Sorry I could not be of more help. Maybe someone who has more experience with PC will reply soon.

My thoughts and prayers are with you.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/
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sequoiaranger
Regular


Joined: 05 Nov 2007
Posts: 24
Location: Ramona, California

PostPosted: Thu Nov 08, 2007 2:38 pm    Post subject: Thanks, Jim, for your caring concern. Reply with quote

I posted here because I thought that his Forum might be a good place to "advertize" that the Eligard did not work and find out if others on the Forum had any similar experience. I know I am an anomaly so far. If someone else out there had the same experience, maybe "our" batch of Eligard was defective or mislabeled, etc.

My Urologist is one of the best in San Diego, and I trust his source of Eligard, but the more people "concerned", the more we might get to the bottom of the problem, and faster. I have a letter into the CEO of the company making Eligard, etc. so someone should be concerned that their product is not working. Eligard has been EXTREMELY effective in all other instances so...?

My particular prostate tumor was extremely aggressive (Gleason 9+) and fast-moving, unlike most people's that typically move slowly. If I had gotten diagnosed even six months earlier I probably would not have suffered metastasis, so I urge ANYONE with suspicions to get the unpleasant biopsies. My personal opinion is that time is never more "of the essence" than in cancer diagnosis, and "wait and watch" means being a passive spectator in your own slow death.
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brainman
Site Admin


Joined: 13 Oct 2005
Posts: 4214
Location: Tennessee

PostPosted: Thu Nov 08, 2007 2:49 pm    Post subject: Re: Eligard is Failing Me Reply with quote

WOW, that is a high Gleason score! Most of the posts I have read talk about Gleason scores in the 6 to 7 range.

If others have had your experience with Eligard, I hope that the will reply. However, I have not read any posts for any current members expressing that concern. Sorry.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/
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ksplat
Super Moderator


Joined: 26 Apr 2007
Posts: 552
Location: Brisbane, Australia

PostPosted: Thu Nov 08, 2007 6:11 pm    Post subject: Re: Eligard is Failing Me Reply with quote

Hi there,

Welcome to the Cancerforum. I pray there will be a reply to your post from someone "in the know" regarding your treatment & PC.

GOOD ON YOU for being proactive in regard to your illness & treatment. Your tenacity is inspiring to say the least. We often become complacent with regards to what we're "prescribed" or "informed" by our medical team. We should be asking questions all the time (not only when outcomes "let us down") & we should be doing our own research for our own benefit. I know you will receive lots of support on this forum, it's an excellent resource for Cancer in all it's forms.

Thankyou for sharing your experience. God bless & my best wishes.

Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"
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sequoiaranger
Regular


Joined: 05 Nov 2007
Posts: 24
Location: Ramona, California

PostPosted: Sat Dec 01, 2007 7:52 pm    Post subject: Update Reply with quote

After the failure of my Eligard shot, I wrote to QLT, maker of Eligard, and gave them my numbers and stats and requested a free re-try. That was granted!! They overnighted a fresh batch of 6-mo Eligard to my urologist and I was given the shot. So as of yesterday, I have Eligard in my system again. We will monitor the PSA and testosterone levels each month to try to track the numbers.

My first shot back in May may have been a 1-month or 3-month dosage of Eligard by mistake, or....? At any rate, the Eligard manufacturer sent a fresh 6-mo shot and I now will see how THAT works!

In the meantime, I went on Casodex 50mg tablets daily, and my most recent PSA was "imperceptible" once again (down from .4 at the beginning of November). At least I know that if the Eligard truly does not work on my particular body, that SOMETHING will.
_________________
T-3, Gleason 9+
RRP 2-26-07
Using Eligard Hormone Therapy--
working Sometimes!!
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westerville
New User


Joined: 12 Aug 2007
Posts: 2

PostPosted: Wed Dec 19, 2007 1:31 pm    Post subject: eligard Reply with quote

Hi,
Eligard is the generic form of lupron. You mentioned taking casodex now, it should have been given two weeks prior to the eligard to stop any T flare.
I had a shot of eligard in october and just waiting on my psa test results after 3months so I then may be able see if it works for me.
I have an appointment Jan 3rd to see Dr. Charles "snuffy Myers in Virginia. He will put me on triple blockage adt3 with the added avodart.
I am gleason 4/5=9 also and have been having trouble getting the right treatment.
I understand your complaint about been diagnosed earlier. My family doctor keep telling me psa numbers were wonderful only to find out after going to a urologist and having a biopsy that the reason my numbers were wonderful was because my cancer is aggressive and doesn't produce much psa.
Well I hope you just got a bad batch of eligard and it is working for you and me now.
Have a nice holiday,
Westerville
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sequoiaranger
Regular


Joined: 05 Nov 2007
Posts: 24
Location: Ramona, California

PostPosted: Sun Mar 02, 2008 12:59 pm    Post subject: New Eligard Seems To Be Working For Now-Howz about You? Reply with quote

I have an appointment to get my PSA/Testosterone checked again this next week, but I had a check early in January and both were fine--so far.

Westerville--how about you?
_________________
T-3, Gleason 9+
RRP 2-26-07
Using Eligard Hormone Therapy--
working Sometimes!!
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westerville
New User


Joined: 12 Aug 2007
Posts: 2

PostPosted: Sun Mar 02, 2008 1:17 pm    Post subject: treatment Reply with quote

Am doing fine.
My Psa in Jan. was .04 in feb. .02, So the eligard is working for me. My doctor wants it down to .01 though. Lost the hair on my hands and part of my legs. Had my wonderful appointment with Dr. Myers in January and now feel comfortable with my treatment plan. Take many supplements and added scripts and a new diet. Have blood work done monthly to keep a eye on things which is nice. Still need to get another doctor on board to administer the shot , one that agrees with my treatment plan. Some doctors wait till you get worse to start treatment , reactive. Few doctors treat first when it is easier to reign in the monster, proactive. Am now getting my VA compensation for prostate cancer and agent orange while serving in Vietnam, so that does help with financing all of this. Been reluctant to try the VA doctors but might give them a shot to see what they can do for me.
Later
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