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HT side effects-- straight talk, please

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Posted 10/23/2010 9:39 PM (GMT 0)
There is a thread about this on the usenet support group.

One of the posters has copied oodles of post all extolling the absolute horrors of HT, and it does sound pretty bad.

So, although I know it can't be good, I would appreciate comments from those of you on HT such as Lupron. As always, we know that every aspect of this disease differs tremendously from one person to another. But I'd still like to get a more even-handed response, so please do so. I realize this is just anecdotal information (and I hope for me it turns out to be an academic questiion as I am just at the post-op stage and possibly looking at SRT)

Mel

Posted 10/23/2010 11:53 PM (GMT 0)
Hi Mel,

I took Lupron for two years. The side effects are manageable and did not interfere with my life to a great degree. Here are the SE's I experienced. They may not be the same for you.

Loss of libido

Loss of body hair

Weight gain. Mostly in the second year

Hot flashes. Worse at first but tapered off after the second or third shot.

Testicles shrank. At first I thought it was my imagination but others commented on the same thing.

Minor fatigue. Again this was during the second year and mostly the last four months.

For the most part I have gone about my life pretty much as before my treatment. My motivation for the HT was my research regarding the effectiveness of the combined radiation and HT for advanced PCa cases such as mine.

Best of luck to you. Hopefully you will not need to experience the HT.

Regards,
Don

 

Posted 10/24/2010 1:09 AM (GMT 0)
Aloha Mel,
I was on Lupron Depot 3 mth shots for one year. I asked to stop after one year as the shot sites were very sore, some what painful. The pain continued after the last shot and about 5-6 mths later I could not ride my bike or walk very far. If you go this route, I'd suggest getting the monthly shots, better chance that the slug of stuff injected does not destroy your muscle tissue. All the other stuff you sorta get use to. We are all different, we all are affected differently by treatment. Hope you don't need to cross that bridge.
Joe
Posted 10/24/2010 1:58 AM (GMT 0)
I would say that my side effects were manageable to. I had loss of libido and it was total loss. Loss of body hair and fatigue. I managed the fatigue by keeping on exercising. Now that I have been off for 18 months my libido is back and so is all my energy. It was worth it in my opinion.

peace to you
Dale
Posted 10/24/2010 4:01 AM (GMT 0)
Hi Mel:

The above posters have said it quite well - Hormone therapy is not fun but it IS manageable.

Remember that they don't call it "Chemical castration" for nothing.

I was on Lupron for 10 months and here is my story:

First three weeks of a 3 month shot - no problem whatsoever. Maybe this stuff is not that bad after all.

Week four - What the hell? No more morning erections, not to mention night time erections. Hot flashes started. More of an irritation than anything else.

Week five & following - I learned the meaning of the word "Libido". For the first time since I was about 12 years old I did not even WANT sex. Now this is a weird feeling for a normal male and takes some getting used to.

Second & third three & four month Lupron shots - That first time was just another shot in the butt. The second shot hurt bad and had me limping for 2 days. The morning after the third shot I could not even get out of bed because my right leg could not support me. Next day I managed to limp around but very painful.

Be aware that this does not happen to everyone. Also I have not experienced weight gain or mental problems. 

I am on Lupron vacation right now - Just Casodex. My testosterone level is up from 20 to 180 in the past 5 months. Still very low but getting better. Still no interest in sex.

I noticed that my testicles were about the size of jellybeans. Bummer.

My plan (grudgedly agreed to by my Onc) is to go with intermittent HT to give my body a chance to recover between doses.

Mel, it's not fun but it is something that can be managed.

Don K.

Posted 10/24/2010 5:08 AM (GMT 0)
Mel,
Side affect vary from patient to patient. For the best information go to the PCRI web site they have a few articles on managing side affects.
Also Scholz's book "Invasion of the Prostate Snatchers" has a chapter or two on the side affects of HT.
Just about the only thing that can't be managed by other drugs or excercise is the loss of Libido.
JT
Posted 10/24/2010 8:18 PM (GMT 0)
Mel,

M. D. Anderson's website states:

"Side effects of hormone therapies include:

Impotency, loss of sex drive
Loss of muscle mass, weakness
Decreased bone mass (osteoporosis)
Shrunken testicles
Depression
Loss of self-esteem, aggressiveness/alertness and higher cognitive functions such as prioritizing or rationalization"

It was the last one that got me. After discussing that "higher cognitive functions" language with MDA doctors, I decided that I would forego HT if the need ever arose. Reading, thinking, and writing is basically what I live for now.

I truly hope you never need to make that decision.

Zen9
Posted 10/24/2010 10:07 PM (GMT 0)
>>Loss of self-esteem, aggressiveness/alertness and higher cognitive functions such as prioritizing or rationalization<<

to not receive HT for that reason is just plain wacko, imo.  i have been on lupron for more than seven months.  i am into the tough part of my last shot (six weeks).  my penis is flaccid and my testicles are shrunken and my belly is bloated but i'm sharp and functional with no depression or loss of self esteem. 

please do not forgo extending your life -- should you ever be in the position -- for the aforementioned reason.

ed

Posted 10/24/2010 11:17 PM (GMT 0)
"to not receive HT for that reason is just plain wacko"

You clearly haven't lost any aggressiveness! Can't tell about the rest ....

Zen9
Posted 10/25/2010 12:28 AM (GMT 0)
you said: "I truly hope you never need to make that decision."

you've never received HT, right?  how on earth can you give somethat that advice in a life and death matter based on heresay?  and like i said earlier that i am in the tough part of this three-month injection which does mean i get aggravated very easily cool .

ed

Posted 10/25/2010 2:30 AM (GMT 0)
Ed:

I appreciate your comment, but I think he was merely saying that he hopes my situation does not go south.

Mel

Posted 10/25/2010 2:53 AM (GMT 0)
Zen.  i apologize. i just want to emphasize that lupron isn't that bad for most of us, and most of us here do have the fighting spirit.  among the things that really bother me is i have lost desire for my hobbies just like i've lost the desire for sex.  but i do believe my interests will be restored soon.

ed

Posted 10/25/2010 12:29 PM (GMT 0)
I am in the month 18 of the HT. I have to say that my life did not change much because of it. The only significant change is no sex, but the good news is that I don't miss it. I do have hot flushes, but after a while I got so used to them I don't even notice much. Weight gain is a bit of a struggle. I gained about 10 pounds.

As far as mental capacity, I feel as sharp as usual, but I do see short term memory issues, that I hope will go away when I stop the HT.

Overall, for me, it would not be a question to do it or not, if there was a chance it extends my life.
Posted 10/25/2010 2:57 PM (GMT 0)
The previous posters have all described side effects very well and my experience was the same.  I have been on the treatment for 5 years.  In that time my PSA remained consistant and in the acceptable range.  Unfortunately, scans were never taken during that period and though the PSA levels were always under 1 a 3.5" tumor was found that was not detected.  I still get the Lupron injections, I've also been through Chemo and  Radiation treatments and I am about to start a newly released Chemo treatment Jevtana.  (I would love to hear more about this treatment)

I would encourage you to be certain your bone scans are performed every 2 years and insist on whole body scans over time as well.  I am convinced had body scans been preformed on me over the last few years they would have found this prostate cancer growth.  They were not specifically becuase my PSA remained consistant.  Remember, not all prostate cancers effect PSA.  My Oncologist recommended a CLinical Trial known as MDA3100, which I turned down as I discovered it was just a more aggressive Hormone Treatment.  This trial only allowed for scans every three months (non-negotiable).

2005  PSA 34 Gleason 4.5 + 4.5 = 9  Prostate removed

HT   2005 to current  PSA .05 to 1.2

3.5" tumor discovered in abdomon.

April 2010 to August Chemo

August 3 weeks of Radiation

10/12 started new Chemo Jevtana

Posted 10/25/2010 3:06 PM (GMT 0)

I was merely trying to give Mel something additional to think/ask about.  I have always been somewhat in awe of professors, and I apologize to Mel for wasting his time.

The rules of this forum - written and unwritten - have become so complicated and contradictory that I find it virtually impossible to make an observation or express an opinion, much less to articulate an extended argument.

Accordingly, I will merely check in from time to time to see if anyone has posted a link to a new study that interests me.  I thank in advance anyone who does so.

Zen9

Posted 10/25/2010 3:09 PM (GMT 0)
Not sure if it is too soon to post reaction as woody is still undergoing radiation and we are not sure how much of what he is experiencing is related to the radiation and how much is due to hormone therapy. After 3.5 months on lupron, he now has HBP (new), extreme fatigue, loss of mental clarity which is more than just short term memory problems. The hot flashes, loss of libido, weight gain are a nuisance, but the loss of mental clarity and extreme fatigue are affecting his ability to work. His last HDR treatment is tomorrow, and he goes in for his next lupron shot in mid nov. We firmly believe that he needs to stay on hormone therapy for 2 yrs, but if memory problems and fatigue have not resolved after the first of the year, he may have to make life altering decisions on whether to stay with treatment or continue working. Very afraid.
Posted 10/25/2010 4:35 PM (GMT 0)
One of the "next generation" of HT drugs is called "Firmagon"..Works like Lupron but no "T" bounce so no need for casodex..Also seems to work quicker, dropping testosterone levels very quickly to very low levels..Monthly shot.

Anybody have any experience using this?
Posted 10/25/2010 4:53 PM (GMT 0)
Zen:

I'm really confused (and I'm not even on HT yet!): was I supposed to have been insulted or something?

I found nothing offensive whatsoever!

Mel

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