Observations and Lessons Learned after 32 months of ADT

Observations and Lessons Learned after 32 months of ADT Several recent posters are facing the possibility of androgen deprivation therapy (ADT) or, as some call it, hormone therapy (HT). I decided to post my current observations and lessons-learned on a separate thread versus adding it to another poster’s thread. I am on what is referred to as ADT2: Lupron Depot (leuprolide acetate for depot suspension) plus 50 mg, daily, of bicalutamide (brand name Casodex). In layman terms, Lupron reduces testosterone production to castrate levels while bicalutamide is an anti-androgen that inhibits testosterone from binding to androgen receptors. Lupron is an intramuscular injection into my hip. The bicalutamide is a pill. Lupron comes is several dose sizes. I am currently on 3 month injections. Previously, I have had 4 and 6 month injections. My current oncologist stock 3 month injections, so that is what we do. I am scheduled to complete my prescribed 36 months of ADT in November of this year. Early on, I spent a lot of energy objecting to my doctors recommending 3 years of ADT. I finally gave up after three oncologists (including Dr. Lam) insisted on 3 years. At this point, I have less than 5 months to go. I might as well stay the course. <b style="mso-bidi-font-weight: normal"> THINGS TO DO BEFORE YOU START ADT Get a baseline bone density scan and determine which doctor will monitor your bone health. I did not do this and I very much regret it. ADT can degrade one’s bone density and cause or accelerate to oste openia or even osteoporosis. I was over a year into my ADT before I even checked. I now have borderline osteoporosis. I am now receiving 6 month Prolia (denosumab) injections. I get QCT bone density scans. Doctors Lam and Scholz recommend a QCT bone density scan over the common DEXA scan. They contend DEXA scans understate the problem in men. I have decided to continue monitoring and treating my bone health with my oncologist instead of my GP, even when I am finished with ADT. Discuss ADT sexual side effects (SEs) with your spouse or partner. <span style="mso-spacerun: yes"> Discuss your joint approach to dealing with this. For some couples, putting sex on the back burner is an option. However, my wife and I have always had a very active sex life. Plus, she has a strong libido. So, putting all that on hold was never an option for us. I strongly encourage men to not immediately accept the common norm that sex is over with ADT. It does not have to be that way. Yes, things will be different, but intimacy can most definitely continue. <b style="mso-bidi-font-weight: normal"> STARTING ADT ADT SEs do not start on day one. And, SEs will vary from man to man in intensity and timing. After the first injection, the side effects gradually increase. For me, the SEs hit full force at around the 3 month mark. After hearing my PA’s warning on how Lupron might heavily affect me, I deliberately delayed my first injection until after a business and trip and scheduled the injection such that I had the Thanksgiving weekend to be off from work, just in case. Of course, I felt no effects for a good while after that. I get hot flashes! Some men are lucky and have minimal problems with hot flashes. That was my first real wake-up call on ADT. I still remember sleeping in the winter of 2011 with a blanket on me. And, then, wham! I would wake up on fire. I would have to get up and walk around the house to cool off and calm down.<span style="mso-spacerun: yes"> Those initial hot flashes were so bad I actually had something like an anxiety attack along with those night-time hot flashes. So, I learned. Now I only sleep with a sheet on me, at most. I still throw it off several times a night. We have a ceiling fan and a large floor fan near the bed. My hot flashes can almost subside during cool weather or when I visit a cold climate. I even let myself start thinking that the hot flashes are over. But, then summer comes along and here we go again. I wear cool, comfortable clothing. I carry one of those decorative folding fans around in the summer. I do not hesitate to use it, even in business meetings. I get a fair amount of ribbing over that! There are drugs than the doctor can prescribe to ease hot flushes, but I decided I did not want more drugs and even more side effects. All in all, I have learned to manage the hot flashes in a way that does not seem to be too troublesome. But, i still look forward to not having them. Establish a consistent resistance training program. ADT can reduce your muscle mass, which has all sorts of negative implications, from increased fatigue to self-image issues. I have a resistance routine I try to do every third day. I have been very successful on this. I have always been a skinny guy. I could not afford to lose any muscle mass. But, I did lose muscle mass – a lot of it! It was not all due to ADT. I had a significant surgical complication that cost me a lot of weight loss. I powered back from that and started a training program with the help of a personal trainer. Now, I am probably stronger and have more muscles than I have had in years, even before I started ADT. Loss of libido is a huge complaint from men on ADT. It is difficult for me to describe my reaction. I suppose I do not feel those familiar sexual urges in my body. I do not fantasize like I used to or have very many sexual dreams. However, my brain is still very interested in sex. I still find women attractive. I still enjoy intimacy with my wife. We have sex as often as we ever did, even in our younger years. The physical sensations feel wonderful. The best way I can describe it, for me, is I use my brain and do not wait for my body to “signal” that I should be interested. My wife insists that our sex life has not lost a beat and flatly rejects any comment from me implying our sex life is even slightly diminished given my situation. God bless her! ED, sigh! I have 100% ED. I had surgery, ADT, radiation, and chemo. Who knows where I stand. I look forward to giving penile rehabilitation a real go after I am finished with ADT. For, now, a pump and lots of alternative means work just fine. Orgasms are tricky. I can have a lot of what I call “pseudo orgasms” just by having very strong pelvic floor muscles (from all those Kegel exercises.) Those feel great. I usually try for a big one each time we have sex. I have less than a 50% success rate and it takes a lot of physical work to get there. But, the payoff can be huge! When I am successful, the orgasms far exceed pre-treatment ones in both intensity and length. At times, they have shocking intensity. I do hope the effort required and the success rate improves with the return of testosterone. I do not believe I have any cognitive SEs. My wife may not totally agree with that. I am doing well on my very complex job. I still sing complicated music. I think I am driving a car just fine. <span style="mso-spacerun: yes"> I do not recognize any issues. I do think, early in my diagnosis, there was a huge distraction factor. I was getting used to the idea I had cancer. It was on my mind a lot in the early days and could cause my mind to wander. I am more emotional. My wife jokes about my "Lupron moments." I cry more often than I care to. I mostly have that under control. But, I cried at my son's college graduation. His girlfriend thought it was "sweet." Physical changes do occur. My testicles have shrunk some. But, apparently not as much as some men who are on ADT. Mine are the size of large grapes. I have lost most of body hair on my chest, stomach area (non-pubic), and legs. Chemo caused me to lose all of my body hair. It grew back, to a degree, and now, after two-plus years of ADT, I seemed to have lost most of it again. On the plus side, I have more hair on my head than I have had in years. I grew my hair longer after chemo. I have now wavy hair with some curls. My hair was always so straight, even when I kept in longer in the 1970s. My new hair is an endless source of comments and fascination among friends and colleagues. I have fun with that! I have two to other issues that I would love to blame on ADT. But, I doubt I can. My skin itches a quite a bit and I have bumps that occasionally crop up that itch intensely. My dermatologist just tells me I have eczema and that I just need to manage it. The other issue is a persistent, low-level pain in my lower right spine/hip area. I have been diagnosed with facet arthropathy. (Yes, I did have x-rays to make sure it was not metastatic lesions or spinal compression.) I sure wish these would improve after ADT. I think that is wishful thinking. The biggest key to successful managing ADT is to remain positive and be proactive and aggressive in managing SEs, as they arise. Do not give ADT SEs any quarter to gain an advantage over you. Demonstrate plenty of “sticktoitiveness” and any man should manage well enough while on ADT. That is all I can think of for now. I will update this as time goes on.

Another great thread from you, SC, especially for the new guys! As far as pain, it could be not a million, but million and one reason. I remember once getting instantly upset when my Dad told me one morning that his hip bothered him. I asked him which hip it was, he showed "this one" (right), then I looked at his MRI report, it reported a "small non-specific spot" on his left hip, and nothing on his right. X-ray report says he had a start of hip arthrosis on both sides, so...it was probably that, or ADT, or something totally unrelated, sigh.

Here´s to singing complicated music! That one never gets old!

This post is why this site has been so valuable to us. Thank you for sharing your experiences.

SC:

That post had me in mind, right?? Excellent post! I am 5 weeks plus into my Lupron shot (like you, I am also on 50 mg. daily Casodex, started 2 weeks earlier).

So far, I am finding the SE creep up in very subtle ways. I need to do more gym work, but I also have bad knees right now (I will get MRI results in 10 days). But I can certainly do my upper body workouts.

So far, definite breast tenderness, but not severe. Definite fatigue, but not severe in the least. No emotiona/cognitive effects, yet.

I'm sure there will be more to come.

Thank you for the posts and also the kick in the butt for me to get back in the gym

Mel

Thank you so much for taking the time to write that excellent description of your ADT2 treatment.

SC,

Best wishes on your last seven months of ADT. You mentioned having itching and that you could not blame it on the HT. Actually you can. If you look it up, it is a side of effect of Lupron.

I am on on fifth month on HT (I know that is nothing as you are on 29 months) but I do get very itchy at times so I have anti-itch cream next to my bed so when I wake up in the middle of the night because of the itching.

I also use a lot of lotions and creams on my skin mainly because of the SE's of IMRT, but I find it helps with the itching as well.

I like you, tears can come quite quickly, unlike the old days pre-HT.

There is a commercial on TV right now for hormone treatment. I was getting ready to drive up for my radiation session and it started of by saying "do you have fatigue, hot flashes and mood changes? I raised both arms and shouted YES, then it asks if you are a woman over 40? I shouted out by saying probably due to Lupron and Cassodex.

For some reason, the radiologist oncologist is only having me do six months, when I thought two or three years is standard. He said there simply isn't enough evidence to support having a man feel so horrible for such a long period of time. I hope he is right since I am so high risk.

Quite frankly, I don't think I could do three years of this horrible feeling of the HT.

Good luck making it across the finish line. You are stronger than I am.

SC,

Great stuff....well said and congrats on going the full 36 months! I could only take 19 months due to the SE 's.

Also, my skin itches and I do blame HT.

Dave

Steel:

Am I correct that with ADT, your PSA went way down in less than a month, then stayed about the same, and then went down much further?

Mel

SC - Thanks so much for writing that!!

I'm about to see the radiation oncologist tomorrow morning, and we're sure to start the ADT protocol. This has been weighing on my mind a lot, since it seems few have written clearly about their experience the way you have. The side effects have been of much concern, but you've lowered my panic level a lot.

You've encouraged me greatly! The guys on this forum are the best, sharing a pretty difficult reality.

Cheers SC,
Wow, quite a journey. Hot flashes are a small price to pay for anyone considering hormone therapy. I found that walking 1-2 hours everyday seemed to help, and kept the weight off. Hormone deprivation seems to make you hungry all the time. I fully appreciate what my female friends have been going through. I had one aunt that used to say " Oh, the vapors " and fan herself. Now it is clear. Regards to you and everyone else that is going through or considering ADT.

Kris

Jim,
It sounds like you doing all the right things to successfully manage on ADT. Regarding the bone density scan: if they are starting you on XGEVA anyway, then it is probably not as critical as to which bone density scan you get. I think the concern with DEXA is that it will understate a potential problem for men, and thus men needing treatment for bone health will not get it because the DEXA scan indicated "all clear" so to speak. Good luck with your treatment plan and keep us posted!
SC