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Al the best advice I can give you is that there is light at the end on the tunnel. I had 9 months of ADT (called Lucrin in Australia) and yes the effects eluded to by you and other posters do happen. Aside from treating depression if required, there is little to counter the side effects of ADT. I had my last Lucrin injection in november 2007 and have now regained my muscle mass and libido. The mood swings and hot flushes have gone. Plus my fitness levels are almost pre ADT. I am once again playing tennis, and windsurfing. I now have a vitality and zest for life that I thought was gone for good, whilst on ADT.
Clinical trials clearly indicate the benefits of ADT for PCa. Our problems are clearly quality of life issues whilst on ADT. But I have several mates who had ADT combined with EBRT a few years back and are all doing very well. Good luck with your treatment Al.
Hi Al,
I too received similiar treatment to what you're facing with the exception of ADT for 22 months. Good luck with the hot flashes, intensity really seems to vary. http://www.yananow.net/Mentors/PatP.htm
1. Weight gain and muscle loss - definitely - even while on a pretty strict low fat diet. I originally shot up about 40 lbs. and have struggled to give 20 of those back. Even with riding 20-30 min./day 5 days/week and lots of walking, muscles are still wasting. Cardio-pulmonary function has definitely improved!
2. Fatigue - exercise seems to help. I like first thing in the morning and the bike I use also has movable handle bars which provide upper body resistance. Sometimes or more likely every day at the end of work I still need a nap before I can get active again. You will need to pace yourself once you find out your limits. Don't feel guilty about this - just go woth it.
3. Libido and erectile ability. In my case loss of libido goes along with my altered body shaped - definitely droopy pear and noodle arms and legs. ED is a different story though. It's a long road back and I feel fortunate to have my doctor bring it up at each three month check up right after the PSA revelation (undet. as of 10-2-08!). "So how's the erections?" I explain how things are going. Currently, I've gone from being totally impotent and an orgasmic from right after seeding slowly improving using Kegeks and Cialis. A lot of us seem to try the ED drugs once or twice and then give up on them. Let me tell you though if you can overcome the loss of libido and keep at it a couple times a week, good things are possible, even while on the ADT.
4. Depression definitely goes hand in hand with the treatments and I was especially freaked out during the end of EBRT. Took xanax fo a couple months. I'm dealing with it now but it's still a problem now and then. Keep a tight schedule as keeping busy with an agenda is a good cover up for lack of initiative.
I'm now one month post Lupron in my system which means as far as side effects I'm still on the damn stuff. Bodily functions are definitely altered after the radiation but no accidents and for the most part very bearable or at least I'm used to them to where they're no longer a nuisance. I'm awaiting the first sprout of hair on my chest or under my arms as a sign testosterone is returning but am also aware that this day is at least nine more months off. Keep us all informed - p (Alaska, USA)
Thanks for the feedback. Sounds like pretty tough stuff but much better than not being around.
Sounds like some of you were able to lose weight at one point so that must mean that diet and exercise can help control weight to some extent? Also seems that once you are off of it things do improve.
Any other experiences with Lupron? I would be interested in hearing from any having gone the 9 month HT/Seeds/ 5 week EBRT treatment path?
Let me add a positive post. I actually got my sex life back! My prognosis in April 2005 was very bleak, but somehow I am doing OK.
Yes, the HT gave me ED after about 4 months, but as soon as that happened I started usuing Viagra, or sometimes Cialis.
Often, it was to no effect, but I just kept on trying, week in week out, getting the "headaches from hell" after each night I'd used them.
However,I believe by persisting so stubbornly I helped keep my 'equipment' exercised and in working order.
I don't know whether it was the increased blood flow which did the trick, but eventually I was able to have a pretty reasonable sex life while on HT, and within weeks of being able to stop all cancer meds in September 2007, my testosterone soared and I no longer needed those little sex pills.
Because my seminal vesicles were frazzled by the radiation, I do find ejaculation a mixture of ecstasy and agony! BUT It sure is worth it, I can tell you.
All I can say is, never ever give up hope, and don't let failed attempts stop you trying again and again.
Hi Al ... last year I underwent the exact protocol you're planning ... hormone therapy with monthly Lupron injections for six months and then seed implant followed by five weeks of external beam radiation.
I had no depression or weight gain/loss while getting the Lupron shots but the others are right ... no sexual desire or ability, at all. That's indeed a very strange sensation.
The hot flashes were bad but tolerable in my case. By the way, you'll get no sympathy from menopausal aged women when you complain about hot flashes.
I did have one other rather strange symptom from the Lupron injection. For two days after the shot in the hip, that leg hurt around the injection site. It hurt bad enough that I actually used a cane for support. The third day it completely disappeared. My Urologist didn't understand it but it was real.
I was asymptomatic right up to the day of the seed implant. My urinary function worked perfectly. The day after, however, that all changed.
I started taking Flomax immediately with little relief. I had the main four problems ... urgency, frequency, pain and burning from the day after the seed implant right on thru till the end of the daily radiation treatments.
Although not actually incontinent, when I had to go, I had to go right then. I was up hourly every night so sleep deprivation was also a problem and added to the next problem, fatigue.
I drive a wheel chair van three days a week transporting senior citizens to medical appointments so these problems definitely interfered with my ability to continue doing that. By the third week of radiation I had to stop working altogether due to the urgency/frequency problem.
Those vans don't have porta-potties on them.
I recovered nicely from the seed implant and had the catheter removed the following day.
The radiation was interesting ... space age looking stuff. Each treatment only takes about ten to fifteen minutes and is painless.
I talked with others that had been thru it at the time and they all told me that fatigue would be a problems and it was. By the third week the fatigue, both from the treatment and lack of sleep, took it's toll.
As soon as the treatments were completed the fatigue went away almost immediately but it took several more weeks for the urgency/frequency urination problem to begin decreasing.
I had the seed implant last October and completed the radiation treatments in January of this year. The urgency/frequency is now controllable but the pain/burning continues with, literally, good and bad days.
Regarding the Flomax, I went from one pill a day to twice a day during the radiation treatments, back to one a day following the treatment and am down to one pill every other day for several months now.
The only side affect of Flomax, for me, was sinus headaches, bad ones that required a prescription strength spray, Veramyst, for relief. Taking Flomax every other day virtually eliminated the headaches and the need for Veramyst.
My PSA went from 115 to 3 as of July. My sexual desire has returned but ED continues to be a problem.
I was really nervous about that until I joined this site and found out that it could take a year or more for normal functions to return ... something the medical folks conveniently forgot to tell me.
Hi Al,
My treatment was different, was on 3 month Lupron Depot shots to the hips for one year, last shot April o8. All the responses are about right. I still have hip pain, which hurts when ever I walk a couple of miles or more and ride my bike 5 to 7 miles, usually about 50 mins of exercise. It did not mater if I exercised or not, I was still very tired, one or two naps/day. So far not much sex drive, am to test the PSA and Testos this week, do not expect much the way I feel. Talk to your Docs about depression early, I had to beg & plead for help, from my HMO!
As you can tell, everyone reacts a little differently.
Hope you are hit lightly with all this. Be thinking about you. YANA!!!!
Joe
George's post gives some hope (thanks for sharing...)
Three follow-on questions:
1. On the weight gain it seems that some of you were able to take weight off after gaining it.
Had you been on a normal or maybe a higher calorie diet and then restricted calories and increased exercise to lose the weight? It seems that by dropping daily caloric intake that you should be able to manage the weight or does Lupron have you gain weight even off of a restricted calorie diet?
2. What helped with depression and low mood?
3. Assuming ability to take naps and not too severe urinary symptoms were you still able to maintain a normal work schedule throughout treatment?
Prior to the treatments, I ate a moderate diet and jogged daily. During the treatments, I ate anything I wanted. I needed the energy and I wanted to baby myself since things sucked at the time. Part of my rapid weight loss may have been due to the return to a normal diet. I know I wasn't able to exercise normally for quite a while.
The only thing that helped with depression was therapy. I saw a clinical social worker every week. We talked about my anger and depression as well as the changes in my life. We also mapped out what I had to do to return to a normal life.
I was able to go to work every day during treatments. I'm an engineer and I work at a desk mostly. I was tired during the day and beat at night. I had to stop doing many things to conserve energy. No exercise, shopping, yard work, family visits, etc.
Just heard back from my urologist. Turns out he will put me on Trelstar 11.25mg every 3 months along with a daily Casodex.
I am assuming this doesn't change the picture that has been described in either direction? Would once again appreciate any experience or knowledge of the difference of Trelstar/Casodex to Lupron.
Trelstar and Lupron both imitate LHRH(Leutinizing hormone releasing hormone) which is intermittently secreted by the hypothalmus as a response to low testosterone level. LHRH then activates the pituitary to release LH (Leutinizing hormone) which stimulates the testes to produce testosterone.
Trelstar and Lupron both constantly bombard the pituitary and trick it into shutting off the LH to the testes resulting in a lack of testosterone production.
Casodex further reduces testosterone by attacking the 5-10% of testosterone that would still be produced by the adrenals molecules.
I would say that LHRH analogues like Trelstar, Lupron, and Zolodex are probably equal as far as side effects and effectiveness, one would probably decide on one brand depending on insurance and Dr. preference.
Although there are several indications for Casodex usage, the one I received advice and literature on was testosterone flare. Trelstar, etc. cause testosterone flare that can be life-threatening or very painful if there are significant mets or alarge tumor in the prostate. For me, getting CAT and bone scans done Before any ADT was administered let me rule out Casodex. There weren't any areas on the scan of concern.
I'm sure there are probably other reasons for adding Casodex to the initial treatment prior to radiation but I'll have to let others speak for them. Take care - p (Alaska, USA)
