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Lupron or Firmagon

jmikew
Posts: 19
Joined: Jul 2012

I am 57 and had my prostate removed 6.5 years ago...Gleason 7...PROSTATIC ADENOCARCINOMA, GLEASON SCORE 7 (4+3) WITH TERTIARY GLEASON GRADE 5. My margins were clear but less than 0.1. Lymph nodes were negative.  I had a PSA test in December and it showed 0.8.  Going to MD Anderson and they are recommending 7 weeks of radiation (I don't know any details on the radiation yet) and 6 months of Lupron (three month shot version).  I have been reading a lot about the side effects of Lupron and was curios if it is better or worse than Fimagon in both treatment and side effects (both short and long term).  Recently had a bone scan CT scan which both showed negative.  Having MRI today for a closer look at the pelvic area.  Hopefully it will show negative as well and I will have an outside chance of knocking it back for a long time or even curing it.

My current terstosterone level is pretty much middle of the road...I am very active and have a couple of business that I can't ignore...so, I am very concerned about how people react to the Lupron shots and if it would be better for me to suggest Firmagon or some other type.  I apprecate all of the effort everyone puts into this site to help those of us who would like to forget that we ever had prostate cancer.  I have a beautiful wife and a thirteen year old daugher and I want to be around for both of them without being a grumpy old man all of the time with man boobs!

all the best,

 

Mike

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Mike and welcome to the boards,

The issue of Firmagon versus Lupron has been endlessly chewed over, they have shared side effects and some that are unique to one or the other.
They both halt the production of LH and FSH so the main effect and side effects are due to this.
In the absence of these two hormones the testes halt the production of sperm and testosterone, shrink in size and become soft like their younger selves from your boyhood.
The lack of testosterone means the loss of some male features like body hair although others like the deeper voice, beard, etc remain.
Some effects are optional insofar that some men have them and others do not, around 80% of men lose their libido very quickly, the rest decline gradually and a few go on for a long time.
Recovery at the end of hormone therapy is variable, some men regain their testosterone and some do not, it is related to age and other factors.
There are no reliable predictions, sexuality is very much affected but it is an individual matter.
There are quite a few mens' experiences here including my own.
https://csn.cancer.org/node/189508

Best wishes,

Georges

eonore
Posts: 36
Joined: Jun 2017

I am seven weeks into Lupron therapy along with starting Casodex on Jan. 9th.  My testosterone tested at less than 3 last week.  My side effects so far are some joint pain, night sweats and some fatigue.  All in all I am lucky and feel like it is manageable.  If I had to work, I think I could manage with some concessions.  Obviously everyone is different, but I will say it is not the end of the world.

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Mike,

I have been on Firmagon for ten months now, hopefully only another nine to go and I will be free and hopefully cured!
My testosterone is below the assay limit.
My testicles are now very small and soft and I doubt that they will recover.
My weight has stayed absolutely constant and I have not lost any strength although my endurance is down, if I have work hard then I will have to take frequent rests.
But I am talking about hard work like digging the garden, forking manure, etc.
I suffer from mood swings, but they are weird, one minute I am full of the joys of life and the next I can be crying about nothing.
With those numbers you have nothing to worry about, you are going to be here for your wife and daughter for a long time yet.

Best wishes,

Georges

SantaZia
Posts: 64
Joined: Apr 2018

Mike 6 Months on Lupron is doable and I doubt you will grow boobs.  Also you may find you are more emotional rather than gumpy. However you might gain weight if you don't watch your diet and up your exercise. Also treat sex as a job during treatment even if you are not interested.  It helps your wife to0.  Most important is to continue with intimacy regardless of your sexual desires.  The combination of the radiation and ADT will also cause fatigue.  I did a regular running and started resistance training. I had a knee injury about month 4 which resulted in an extra 10 lbs of fat around my waist.  I am two month post treatment and still have a drag on my running and hot flashes and sweats at night. However I am noticing improvements. I tested out sex a couple of times with gnetic viagra and cialis and that still works. So after 6 months on Lupron I can say it was a drag, but this is cancer treatment. I went to MD Anderson too but ended up getting treatment locally. I believe the MD Anderson protocals prior to treatment were excellent and I used all of their recommendations. Good Luck!

Josephg
Posts: 151
Joined: Jan 2013

Hi JM,

My experiences with Lupron, as well as the concurrent radiation therapy, are detailed in this link below.  Not mentioned in the link, as it manifested itself later on, is that I experienced growth in my breasts (man-boobs), with some tenderness and small lumps, known as Gynecomastia (benign breast tissue growth).

https://csn.cancer.org/comment/1414101#comment-1414101

As mentioned by others in this post, the hormone-related side effects are fully bearable, when one considers the possibility of killing the cancer (radiation therapy), or slowing its eventual growth (hormone therapy).

I wish you the best of outcomes on your journey.

jmikew
Posts: 19
Joined: Jul 2012

Went in last Thursday for an "anal probe" MRI...they wanted to get a better picture of the prostate area and surounding and said they didn't expect to find anything.  I realized two things:

1. I could never be gay (not that there is anything wrong with that)

2. I had this urge to spoon with the nurse when it was over

 

Regrettably, the radiologist called last night and said it looked like there was a small mass "pea" size in prostate bed...which was not the news i was looking for, but I have noticed urinating was a little different than it had been.  They will now need to be much more aggressive with the raditation targeted to that location.  Which now I am worried about all the other side effects that go with that.

They are scheduling a biopsy next week (oh boy, more stuff up my rear) to confirm that it is prostate cancer and to see if the grade has changed.  I was a 4+3 when they removed my prostate and I sure need it to stay there or go down.

Was supposed to have a colonoscopy next week (seems to be a theme here)...but I'm guessing that will be pushed back with the biopsy.  Not sure how many cores they could pull for a tumor that small...all I know was the last time they did one if felt like they were pulling large chunks out of me...I just kept thinking someone had a pellet gun stuck up me and kept firing.

kidding aside...I am very worried about quality of life...I'll do whatever I have to to try to stay alive...but I'm afraid my "normal" days are numbered.  I have tremedous respect for those of you who have endured prolonged treatments and any words of advice would certainly help!

 

Mike

hewhositsoncushions
Posts: 267
Joined: Mar 2017

I did not know they did biopsies once a Prostate had been removed....???

jmikew
Posts: 19
Joined: Jul 2012

Doc says they would like to get a core so they can score it...I think because there is a tumor there "pea size" they will use an MRI or ultra sound to guide the biopsy.  if not they will just stick a needle in it to confirm that it is cancer and not something else...or some other type of cancer...wouldn't that be fun!  I would like to know the score of if so I can start a whole new round of worrying.  Plus I guess there might be a little upside in that they at least have a good target for the crosshairs. FYI...I laughed a lot while reading your thread (hewhositsonsushions)...i needed that!  Hope you are on the road to recovery...I'm still a couple of weeks away from by first "boy transition" shot.

cralco
Posts: 7
Joined: Feb 2019

 i am was recently diagnosed and was told if i had surgery the cancer would be gone, so hearing this is not welcome news, so surgery isn't 100%? where is your cancer if the prostate is gone?

jmikew
Posts: 19
Joined: Jul 2012

As Georges replied....you don't really know...I have read that 30 to 40% have it return after surgery.  Each individual is different and it is really dependent to the location and aggressiveness of the cancer.  My margins were clear but not by much.  One of the pluses of the surgery is that if it does return you can do radiation and still have a chance at a cure. If you do radiation first, you can't go back and do surgery or additional radiation at the area.  This was one of the reasons I chose surger, but everyone should decide what is best for them based on the cancer they have.  I hope yours is contained and you are able to remove it all.  regretably, I felt I had been cured after surgery and several years of it not coming back so I wasn't as diligent as I should have been and i hope I didn't wait too long to go through radiation.  All the best to you.

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi Cralco,

That is the million dollar question.
Often it will be in the prostatic fossa, this is the place where the prostate gland was, or maybe there are some cancerous cells assocaited with the urethra or the bladder.
This is the area that primary slavage radiation tends to focus on.
After that the lymph nodes close to the prostate are a good place to look.
This is for low grade cancer, Gleason 7's and maybe 8's.
Higher grade, 9's and 10's maybe there or they may be a lot more ambitious and head off for the bones, a likely first stop is the long bones of the upper legs, but internal organs, sternum, ribs, etc are also likely stops.
You can go a long time post operation before it rears it's ugly head again.
The longer you go the less likely it is but if you are NED, No Evident Disease, you will have PSA tests for years after.

Best wishes,

Georges

Steve1961
Posts: 216
Joined: Dec 2017

wondering why can’t you do surgery again to remove it Would rather do that then hormone therapy and radiation trust me on that one

jmikew
Posts: 19
Joined: Jul 2012

Not sure why either...was not discussed as an option.  I have a consultation tomorrow, prior to the biopsy...I'll ask about it.

jmikew
Posts: 19
Joined: Jul 2012

Had the biopsy but they weren't able to pull a core to re-grade the cancer.  The mass was located to close to the bladder and he was afraid of pushing to hard and puncturing it.  Haven't gotten any results yet but I think it will just confirm that I have prostate cancer...like I need to hear that one more time.  Also started Cosedex two weeks ago and had my first Lupron shot today...after four hours I don't have any side effects so I think I'm in the clear!...well, maybe not.  The shot wasn't as bad as I thought it was going to be I just have no idea how long it will take to start feeling the effects...my wife things the mood swings started last week.  Are you supposed to take Cosedex the entire time you are on hormone therapy?  I am sceduled to do six months but my Cosedex perscription only has a few days left on. 

jmikew
Posts: 19
Joined: Jul 2012

 have been on Cosedex for a month and had my first of two lupron shots 19 days ago.  As of today, I don't believe I have had any side effects...I'm pretty sure everyone experiences them but I'm curious how long it takes.  I might have had a very mild hot flash...but I'm not sure as it could of just been over exersion.  Otherwise, I have no ED issues or reduction in desire and no apparent emotional changes.  It all seems very odd to me and to be honest...I found the shot of lupron to be pretty mild but I might have been expecting worse due to reading too much about it.  I realize it effects everyone a little different but have not heard of having no effect.

I appreciate any feed back...one last question, my DR only perscribed 30 days of Cosedex and when I asked bout re-filling the perscription I was told that was all i needed to take of it.  Kind of thought I would do that the whole six months I am to be on hormone therapy....lastly...shot a one over 73 yesterday...my best round ever....really confused!

 

all the best

Mike

Georges Calvez
Posts: 228
Joined: Sep 2018

Hi jm,

Lupron is an agonist, this means that it works by overstimulating the endocrine system. Thus for a few days the testicles produce more testosterone, a so called testosterone surge.
Then that part of the endocrine system shuts down and the testosterone level falls away. The Casodex blocks the receptors for testosterone during this period.
Effects do vary from person to person; some men on short term hormone therapy see only a small fall in libido, others drop away quite dramatically.
I have now done a year on degarelix aka Firmagon and I would say that some effects arrive in a few days to weeks while others take months.
I will be glad to see the back of it, I will be really ecstatic if my testosterone reappears but the cancer does not.

Best wishes,

Georges

Josephg
Posts: 151
Joined: Jan 2013

I would say that you can count your blessings day-to-day on not experiencing any overt side effects.  Maybe, you will avoid most of them, or maybe you will hit the wall with new side effects within days or weeks.  Enjoy each day with small-to-no side effects.

I don't understand the taking you off Casodex after a very short period, but I will assume that your Doctor has good reasons.  Keep asking 'Why', until you receive an answer that makes sense to you, and that you are comfortable with.  For me, I was on both Casodex and Lupron for the entire 6 month period, during which I had my radiation therapy.

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

I was also on monotherapy with leuprolide (Eligard, Lupron). ADT started with one month of antiandrogens to avoid flare and then stopped, continuing the treatment with three 6-month shots for a total of 18 months.

The side effects were numerous, gradually felt but mild, many were unnoticed, being fatigue the one firstly to be felt at about two months into the treatment. It was also at that time that I experienced mood changes but no vision impairment (pituitary disturbance). The body hair started to become thinner at the three months time together with the loss of muscle mass. The ocasional hot flashes (1 minute if that long) also started to kick in but very seldom. Going to pee at night 3 times became more frequent too, having to get up 5 times some nights.
Libido less come at six months and was followed by shrinking balls, turning into a pair little spongy. At the tenth month I noticed sort of mild gynecomastia but never had sensitive nipples. By the end of the treatment (14th month on) I had sort of rheumatic pain in my joints and arthritis in my feet for about two months at the end of ADT.
I only realized that some side effects were present after recovering from the hypogonadism at the 24 months when the symptoms started to dissipate. The most annoying effect experienced along the treatment was fatigue. Peeing at night become sort of natural and one never knows if such is a cause of ADT. Some effects were present but unnoticed.

One year post the end of the effectiveness of the last shot, all major symptoms have gone. I become more energetic and the testicles become bigger together with libido. Mood changes are more noticed now as I tend to cry easily in the movies. Apart from these symptoms, ADT affects the way our systems function. The kidneys are affected and the thyroid gland is forced to be more or less active helping in gaining weigh (Michelin tire around the waist). Muscle turn into fat for the period that estrogens have replaced the testosterone while on castration, that is hard to recuperate if one stops physical exercises. Overall I feel much better off-drugs than when I was on them.

I hope the above answers your question.

Best,

VGama

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