Hormone Therapy side effects

Alan, those side effects vary with every individual, but the list looks all too familiar.

I've been on it a year now, and have experienced most of those. Some people have had them diminish after a number of months, so don't give up hope. Mine have stayed rather constant (sigh...).

I think over time you adjust to this "new normal", as your body's systems are being pushed pretty hard by the new complete lack of testosterone. The hot flashes are a warm reminder for me that the HT is doing its job, and at least now my continued low PSA readings are reward enough for the side effects.

Of course, if you're embarking on RT too, that adds to the fatigue factor though it is quite temporary. My extra RT fatigue would usually dissipate within 24 hours, though during the week that's just in time for the next treatment!

Mood/motivation/anxiety could be related to HT, but also to the general rather difficult situation of having cancer. If it doesn't improve, you might talk to your docs (even just a GP), to see about something to help. Prozac, Lexapro, something like those are rather commonly used in general, and are used by a number of people on this forum. They have their own added side-effects, but you may find those preferable to the emotional turmoil.

It really is a battle, isn't it?

All the best Alan, and hang in there fellow cancer warrior!

I had the night sweats but slept through them as PeterDA alludes. Wife told me about them the next day.

3 Mg Melatonin SR sustained release helps with the sleep, plus a cheap 4 " foam mattress on top of my normal mattress.

Unfortunately no cure for the total loss of libido, but since I never think of it, literally don't know what I am missing except when I read about it.

So many things related to sleeplessness that it has to be dealt with for bone strength, fatigue, etc.

Seems the dreams would come with more deep sleep rather than less but probably varies by individual.

I can say that as I began year 2 on Lupron on March 28, night sweats have faded, but lack of libido remains.

LupronJim

I have been on Lupron and Casodex for about 20 months now.

I have hot flashes roughly half a dozen times a day. While they have never abated, I do cope with them a bit better. I wear layered clothing and shed layers as soon as I feel one coming on. They are annoying but minor in the grand scheme of things.

I also have some fatigue. I would only characterize it as mild to moderate, though it has gotten a bit worse in the second year on hormone therapy. I find the best way to cope with it is to get plenty of exercise. I do a lot of fitness cycling (1223 miles last year) and also do a little bit of work with hand weights, some core exercises and back exercises. The exercising helps with many aspects of hormone therapy - fatigue, weight gain, muscle loss, bone mass loss and depression.

I do find it also effects me mentally, though fortunately in fairly minor ways. I do feel sometimes like I am in a bit of a "Lupron fog" - thinking a bit less clearly, trouble remember some things and less focused. I may be slightly more irritable (though some men feel it mellows them out). I think the exercise also helps some with these side effects. It also helps to stay mentally active - I am retired but was in software development and have been working on an iPhone app (that is just about ready for release).

I also had a fair amount of trouble sleeping. My oncologist prescribed a mild sleeping pill, which I use each night and have been for over a year. It works pretty well. I started on 5 mg of Ambien and a couple of months ago went to a 6.5 mg sustained release version which keeps me asleep longer (say until 3:30 or 4:00 am, versus maybe only 2:30 am on the 5 mg). I generally don't like taking meds unless essential, but I have felt this one was worth it. Lack of sleep on top of the fatigue can negatively impact you in a lot of ways, emotionally and physically.

The loss of libido has been pretty complete and continuous ever since I started hormone therapy.

While the list of side effects I have experienced is long, none of them are debilitating and I feel my quality of life remains high.

The other side of the coin is that the hormone therapy, along with external beam radiation that I had in November/December 2012 is working very well. When I was first diagnosed in July 2012, things looked fairly bleak - Gleason 9 (5+4) with prostate cancer in prostate, bladder and pelvic lymph nodes. I spent over 8 months with kidney stents in because the bladder tumor was blocking the flow of urine from my right kidney to my bladder.

However my PSA has been undetectable ever since the beginning of 2013 and the kidney stent came out about 13 months ago. So far the hormone therapy and radiation are working great and I would do both again.

AlanB5 -

First, a minor correction in your post. You mention getting a shot of "Solodex," but I think you meant "Zoladex," a drug similar to Lupron and administered for the same purpose. ("Solodex" is some kind of ophthalmic drug). (But it's certainly easy to get these names confused).

Anyway, the discussion of Lupron (I was on it myself for most of 2012, with a few side effects, especially the hot flashes), reminded me of a handout given to me by the nurse in my uro's office when I began the 4-month shots.

It gave the following percentages of side effect occurrences:

hot flashes..........................................59 percent of patients
general pain........................................27
testicular atrophy.................................20
GI disorders........................................16
urinary disorders..................................15
injection site reaction............................13
joint disorders......................................11
neuromuscular disorders........................10
skin reaction........................................8
insomnia.............................................8
dizziness.............................................6
headache............................................6
respiratory disorders............................6

Personally, I had the hot flashes big time, which I might describe as like walking through a very, very cold day, so that you're feeling pretty numb all over, and then walking suddenly into an extremely overheated room, the way that would make you feel. These hot flashes would hit me at totally random intervals, last a few minutes, then completely clear up.

I had some "general pain" discomfort also, but that was about it as far as physical symptoms went.

Loss of libido is pretty much a given on these drugs, and I felt it coming on pretty soon after starting the shots.

But there is some good news. I was told that about four months following my last shot, about the time the Lupron was supposed to wear off, I would feel like I was returning to normal, and sure enough that's what happened in my case.

So hang on there. This is a desert to cross, but there is green grass and water on the other side.

AlanB5 said...
Hi Guys

Looking for some advice on Hormone therapy side effects:

I had my 1st shot of Solodex (I think that is Lupron) about 6 weeks ago, and am starting to feel a bit down on the side effects, given that I will be on this stuff for 2 years. So any advice on dealing with the specific side effects as below is welcome, and any comments from the long termers as to whether they will improve or worsen during the course and how long they might last once I am done:

1) Night sweats. Seem to hit about 4 hours after retiring (2-3 am) and have 5-30 second episodes for about 2 hours.
2) Wakefullness/anxiety. The sweats wake me up, and on awakening have a feeling of general anxiety, not necessarily tied to any specific issue
3) Dreaming. Many dreams, some disturbing to a degree, often with anxious feelings.
4) Tiredness - might be linked to the wakening every night
5) Mood - generally stressed out, not able to focus or concentrate. Snappy with people.
6) Unmotivated
7) Total ED, and just not in the mood for it also

BTW I start the Radio Thereapy on 2nd June

Thanks in advance

So you've had RP via Da Vinci.
You've started HT(for how long?)
and you'll be starting RadioThereapy on 2nd June?

Hi Foxrun

Have been on HT for close to 3 months now, commencing with tablets to combat the flare effect and now on Zolodex (Lupron?) shots every 3 months.

Tiredness has rapidly escalated since I initially made the post, and hot flushes now hitting during waking hours. Can't really understand why it seems to have gotten so bad over the last week. Need to get onto the exercise routine, in fact was going to get ut for a walk before I got distracted by the forum.

Right - mental kick up the a... get outside boy