Members' Comments: ADT, need some honest feedback

Well, I was going to wait a month or so before posting this, but with the latest spate of input posts, now seems like a very good time...and I realize the feedback will be honest.

I won't rehash my situation in detail, but suffice it to say that surgery and SRT failed and my PSA has been climbing steadily, perhaps alarmingly so.

It is currently at 9.0. I will be doing scans in 10 days and I'll be consulting with my doctors (Husain at Umich in person and Dr. Lam by telephone) the second week of January. I'll be doing one more PSA before then and at this rate my PSA will be about 13.xx.

I assume that the results of my CT Scan and Bone Scam will have no bearing on the next treatment: it will be ADT. So, I guess I should ask: is this assumption probably correct? Or might certain results trigger a different treatment.

If ADT, I plan to do Casodex for 10 days (both Lam and Hussein say that is not necessary but my local urologist says it is a good idea to prevent a flare, especially if the PC is in my bones -- neither doctor has a problem with my doing that). From my reading, it appears to be advisable to do the Casodex first.

After that I will add a Lupron shot (3 months or 4 months -- any suggestions?) and probably Avodart. So I will be on ADT2 or ADT3.

Needless to say, I keep reading about the horrendous SE and folks who eventually beg off being on it, so I know it's bad. I guess I'd like input from those who are on it. I am not worried about the loss of libido (it just seems to be off my radar, given the other pressing issues). I am worried about being unable to do a job I love (college prof.) and also just feeling miserable all the time due to the SE.

I also don't know what to expect regarding hot flashes (that seems to be a certain SE). Will I be soaking wet during the day? All night? I suspect it is hard to predict. What about joint pains? I'm not sure if that is a common SE. I know weight gain and fatigue is very likely. Or am I mistaken.

There ya go. Lots of stuff. Let's hear from you all!

Mel

 

Mel -- i think you'll be able to do your job just fine.  hot flashes for me were worst at night.  my wife runs a little hot too so we have a window AC and a fan over the bed.  that helped alot at night.  hot weather was miserable too.  you know the hot flashes are very similar to what every woman experiences in menopause.  i found myself talking and joking about hot flashes with alot of my women friends .

i had a lot of SEs but i also had two radiation treatments back to back so i'm sure my lupron SEs were aggravated by the radiation.  i gained about 25-30 lbs in nine months and easily weighed the most ever. i did take the weight off and then some in less than three months though.  i still struggle more with my weight than usual but i think the anti-depressants i took were also a big factor.  i am off them now.  BTW, i took celexa for hot flashes and depression.  SSRIs helped me alot but they have their own SEs. 

i think you are going to be fine.  maybe 142 can chime in.  i have been curious about what he is experiencing even though some of his descriptions could make a lesser man want to hang himself   .

hey, you get used to it.  i hated being on HT but i remember thinking it was better than being dead .

ed

 

I have been on HT for two years and it has not been horrendous. Yes the hot flashes are not great but they have now greatly subsided. No joint pain. No depression. I have gained weight, but not too bad and it will come off. No problem workinhg and I have not missed any days on the gym due to the HT. I am on ADT2, Lupron (six month shots) and Jalyn ( Avodart and Flomax).

I think your concerns are overblown based on the stated experience of many on this board. I am not aware of many men touting the horrendous side effects. I have found that by moderating diet with less meat and fat, eliminated caffine, and eat more fresh vegetables; coupled with a good 45 minutes a day of wxwrcise, that I feel fine. Most of our side effects are just what our wives go through naturally, so I am not about to wimp out over hot flashes....my wife won't let me!

I just crossed the two year mark on ADT. I was prescribed Lupron for 3 years, based on the Bolla studies. I added Casodex last February. Side effects At first, it seemed like a big shock to me to have my testosterone plummet. However, I had just been diagnosed with cancer and had a very tough RP experience. I definitely had some depression issues. I do not know how much of that was due to the Lupron or just the cancer diagnosis and surgery complications. By month four, I was back to my happy self. I am definitely more emotional than before ADT. It was especially acute when I was having some depression and working through my surgical complications. I cry much more easily now. It has gotten better. I have my emotions more under control now that I am used to low testosterone. But, my wife gets a good laugh out of it when I have the occasional cry. I suppose some folks would view this as a positive. However, I do not really appreciate being so emotional. On the upside, it does give me a different perspective on life. I had very intense hot flashes for the first year. I did the usual coping mechanisms: two fans in the bedroom, light clothing, kept a decorative hand fan with me (I got a lot of ribbing on that.) The hot flashes eased and are now more of a minor issue. I still have to be careful to not get too warm. That is a tall order, in the summer, where I live. The worst: singing with the symphony, with a tuxedo on, under the stage lights. I can count on it then – bam, wham! I have total ED. The cause is confounded by having a RP and being on ADT. I look forward to working on that again once my testosterone returns. I use a VED. My libido is a mixed bag. While on ADT, I do not respond easily to visual stimulation. I do not have fantasies like I used to. Now, I will mention to my wife if I had a sexy dream (a rarity) and she congratulates me. But, my wife and I still very much enjoy each other’s intimacy. We have not slowed down at all. She has been great on that point. She is an aggressor and keeps me very engaged. I respond very easily now. I have a lot of sensitivity “down there;” strangely, more than before my treatment. I cannot tell that I have any cognitive side effects. I have a very complex job and get great reviews. I also sing a lot and seem to be hanging in there (I was never that great at singing, but at least I cannot detect any degradation.) Exercise saved me. I have a personal trainer. I am very faithful to resistance training and walking. More than anything, exercise pulled me out of my funk. I had lost of lot of weight and muscle mass (I did not need to lose weight!) with my surgical complication. I built that back and probably am in the best shape of my life. It is all about motivation I guess. I have not gained any weight. However, I am not prone to weight gain. I do eat a healthy diet. Finally, a plus: I might as well get something good out of ADT. I had been balding for ten years. My hair is growing back! I start to grow it longer just before chemo. I lost most of all of it due to the Taxotere. Now, I have grown it out again. I get a lot of comments from my friends on my hair. I am having fun with it. I will gladly give it up to be done with Lupron. But, for now, it is a good thing. Having written all this, I am so looking forward to finishing up and getting my testosterone back. My wife thinks we are doing great. And, we are. She told me that if my cancer is still there, I have proven to myself that I can go on and off Lupron the rest of my life and do well. She is right. But, I still look forward to being done with ADT. My real wish: I hope ADT fulfills its intended purpose and helps cure me of a serious case of prostate cancer. Only time will tell.

I forgot to mention that I forget things now. That has been pointed out to me in meetings lately.

Libido? Yeah, funny.

Mel:

i'm a relative newcomer ... i've been on HT for a little more than 4 months. Started out with some hot flashes ("OH, that's what my wife was talking about") ... but with fans and light clothes got through it. Now it's not so often or much a deal.

I figure my cognitive is off some but 10% due to fatigue and concentration ... but i live in a high pressure production environment and still managing fine.

Weight has been difficult, but i'm maintaining my weight with diet. Need to exercise more.

Libido is poor and ED is issue compared to before, but as others report there's still some action in the right setting and making most of it ... not as bad as i feared.

Ray

ps we're neighbors of sorts. I'm at U Mich / Scholz as well ...

Hi. Thought I'd chime in.

My husband (69 years old) has been on Lupron/Casodex for around 4 months. He has not experienced any fatigue nor depression. He certainly has the hot flashes, but they are not life altering. In fact, we get quite a few laughs out of the fan on/fan off sagas. He is very active, and keeps up with good exercise, but he has gained some weight, particularly around the middle. He has always eaten right, so we're good there. We aren't focused on the PC. He has had his radiation treatments and is due a first checkup in late January. We stay very active and engaged in other areas of our lives. We are going to assume all is well until (and if) we meet another challenge.

Frankly, I think he has gotten befuddled a time or two, not over anything major, but I've noticed it. I don't mention it to him at all because it seems quite minor and he is approaching 70.

There is a good discussion on the PPML forum on Lupron side effects right now and many of the listed and non-lised side effects are talked about. Seems the bottom line is it can effect men in variations and differently to some degree(s). Some of the many commonalities are the hot flashes, sweats, weight gain, fatigue, emotional changes, libido and such.

Myself no matter what drug(s) you end up using-trying, get a psa test like within 1 month especially because I think you would be much calmer-peaceful at heart, if you know it is seriously effecting your psa.  If it has not lowered it within even 30 days+, then maybe show more concern and worries.  Usually most patients do well on whatever HT therapy early on, the exceptions are usually suspected variant types of PCa, or highly aggressive forms of PCa that would be unlikely in most cases.

Post Edited (zufus) : 12/10/2012 7:30:14 AM (GMT-7)

Mel,

I just got my second 3 month shot and consider myself lucky. I am fatigued and if I am having any joint pain I wouldn't know if it was from the shot because I have severe athritis. Hot flash issue was minimal and I have managed to keep weight off but I go to the gym twice a week.

I'm only one month into my hormone therapy, so I think all the comments above regarding side effects are more relevant than anything I could say. But I just got my second one-month lupron shot this week and Dr. Scholz (filling in for Dr Lam, my regular oncologist), really stressed the importance of exercise.

I'm not much of a fitness guy, but I have joined a gym and when I told him that he said that keeping at the exercise will make a night-and-day difference to how I handle my treatment. (Note: just started having a hot flash while typing this.) In his words, "even when you have the flu and don't feel like going to the gym; go anyway." We'll see how this works out and if I can keep up the exercise. (Note: hot flash is over. Mine don't last long.)

Michael

I’ve been on Lurpron (4 month intervals) and daily Casadox since June of last year. The worst SE for me is joint pain. My fingers ache typing this but I got used to it.  Libido of course is a problem but I’m vertical and have a loving wife who tries to help.

I work at a Refinery in the engineering department and have no difficulty getting my work completed.  I do from time to time have a bit of cognitive impairment but I check and recheck my work more closely now. Sometimes it could be the simplest thing like I walk out of my office and don’t remember where I’m going.  Or while driving, have to think where I’m going. It comical sometimes but never really bad.  Maybe it’s normal for a 62 year old.

 I live in the Pacific Northwest where the temperatures are more on the cooler side and really haven’t had any bad hot flashes.  I did notice when I went to Louisiana last spring that the hot flashes were more numerous, but still not as bad as some men get them.  For that I’m thankful.

I have also lost a great deal of body hair but still have a full head of hair and pubs are still there also. . My wife is really getting tired of vacuuming behind the bed, so I hope we are about done with that.

I lost about 40 lbs after being diagnosed and haven’t gained too much back so I’m doing ok as for as weight gain goes.  Time will tell on that, I’m sure.  I’ve (and my wife) noticed that my emotions are at skin level and it doesn’t take much to set me off.  My co-workers have noticed that also.  Some will avoid me at all cost.  Others are more sensitive to my condition and are very helpful and understanding.  Sometimes I just close my door for awhile and everyone knows not to knock. I try to stay busy and not let fatigue own my life.

So basically, everybody’s journey fighting this beast is different.  I just know it’s working now and hope and pray that when the Doctors say I can get off of the meds that my PSA doesn’t rise ever again.  Good luck to you.

bertb

 

I've been on ADT3 for five months now and I don't appear to be having several of the popular SEs. I feel a bit left out... but in a good way.

I seem to remember that hot flashes are reported by approximately 60% of men on Lupron. That's a lot but it does mean that two out of five don't get them. I have been working out compulsively and have cranked back even more on carbohydrates and so far there have been no noticeable changes in body composition.

But I have another year and a half of ADT three and another six months to a year for the last shot to wear off so we'll see.

Mel -

Another angle on this. I believe I recall that you're a professor?

I was an academic myself for most of my working career (university librarian at a large state university). For a few semesters now and then during that time I taught one of the library orientation course to freshmen.

It occurred to me that had I been on Lupron during one of those courses I might have been in a situation where I was standing in front of a class of students one day, maybe writing on the blackboard or something, when one of the hot flashes might have hit. Not being ready for that, such an event might well have rattled my train of thought and interrupted my presentation in front of that class, forcing me to improvise rather quickly.

But if you think this might happen during one of your course presentations, you can plan now strategies to deal with it.