Lupron - What to expect

Will be starting Lupron on Monday. Plan is to start with a one month dose and, if I tolerate it well, go will a longer dose in a month. I've read up on ADT and potential side effects, but feel it is better to get the straight scoop from those who've personally experienced it. I realize everyone reacts differently, but thought I'd throw the questions at the real experts.
1. What was your immediate reaction to the shot?
2. Did your PSA decrease quickly?
3. What supplements did you take? I'm currently taking Centrum one a day vitamin and 1,200 mg calcium with D3. A friend recommended B12 to help with loss of energy.
4. Any self-remedies for X, Y, or Z side effects?
Thanks in advance for any insight you're able to provide and hope all are doing as well as possible.
Bill

My MO said you WILL gain weight. If you aren't active in some way, I recommend you start doing something now, before the effects of Lupron hit you. It doesn't have to be a heavy-duty activity. You want something that's sustainable. I go on long walks 4x per week. I lost over 20 pounds and have kept it off for two years. I don't really think the walking burned the weight off. More likely, not sitting on my butt 24/7 makes me feel better about myself, which inspires better control over my eating habits.

Keep moving is my best advice.

So your post op and SRT PSA has gone to 7.14 and you are concerned about a little Lupron? I am a bit surprised your docs aren’t talking about some taxotere or Xtandi. That appears to be a serious recurrence that needs control. The side effects of metastatic PCa are far worse than a little lack of testosterone. Have you had any scans to see where the cancer is?

What to expect? I was on for nearly three and a half years. Here goes. Hot flashes. Weight gain. Loss of energy. Loss of body hair. Loss of libido. Love of the Hallmark Channel and shoe shopping. . And, thankfully, in my case loss of PCa. To combat it, increase exercise, drink a lot of water and green tea, eliminate carbonated and acidic beverages and most alcohol, increase plant based food and reduce animal fat. Meditate and reduce stress. Get plenty of hugs from friends and loved ones.

You probably need some serious treatment based on your previous treatment and significant rise in PSA. Are you with a world class medical oncologist that specializes in PCa? If not……why not? You don’t “try on” Lupron or other treatments to see if you like them. What you are telling us is that from here it appears you have significant disease and need to treat it while you can. Has your doctor really explained the situation? You sound rather casual about it and I am pulling my hair out.

What was your original diagnosis? PSA…Gleason grades and score….number of positive cores…..surgical pathology? Sorry to be so tough, but to go from PSA .14 to 7.14 after RALP and SRT in just two years is extremely alarming to me.

Largebill68 ----

I have been on continuous ADT, starting with LUPRON, since diagnosis.

I started with a PSA of over 100, and my PSA fell to single digits after one month, then decimal levels the second month. That was the beginning of my treatments ...

Since then, a round of chemotherapy, the addition of the medication ZYTIGA, and then 45 radiation treatments were added to my treatment regimen.

You will need to follow your PSA closely --- my oncologist has me visit the lab every month. Each case is different, but this helps my doctors "fine tune" my care plan.

Make SURE you ask your doctor to assess testosterone. My oncologist found that LUPRON wasn't fully suppressing my testosterone, which fuels prostate cancer. We found ZOLADEX suppressed my testosterone and this discovery made a big difference.

So ---ask your oncologist to monitor testosterone levels, to make sure LUPRON is keeping testosterone low. This is essential for any fellow on ADT. In my case, switching to another form of ADT shot was easy.

Hot flashes began for me the first night --- some fellows don't experience them right away. Use a room fan --- install a ceiling fan in the bedroom and living room --- & keep ice water by your bedside at night.

For personal comfort --- wear loose-fitting cotton t-shirts and cotton shorts in the summertime --- and cotton boxers or briefs.

Use cotton sheets on your bed ---- and protect your bed pillows with TWO cotton pillowcases --- launder often. These tips will help, if "night sweats" are a problem. If you don't have a ceiling fan in your bedroom, get a room fan.

For most social occasions and work, I wear "office casual" style khacki slacks, a stylish cotton athletic undershirt - with an Oxford shirt --- sleeves rolled, adjust the buttons as you wish. Comfortable --- casual --- classy. Cotton will keep you more comfortable, if hot flashes ensue.

I work full-time, I stay active, and I exercise every day -- and have been on ADT for 8 continuous years.

Staying active is imperative --- it will boost your energy. Pick what works for you ---- walking, yardwork, gardening, biking, or visiting the gym. I walk in the evenings after work, and walk twice a day on weekends.

Stay consistent --- if it's raining, you can buy a "one day pass" at a local gym or recreation center or walk inside a shopping mall. Whatever it takes --- stay active.

Get a close bond going with your medical team ---- this is a time to FOCUS on getting that PSA controlled.

You can look at my medical history shown below my signature, and see that I have pursued several intensive treatments.

I have also been on ZYTIGA (now the generic form) for about six continuous years.

I know you have had radiation treatments --- be sure to ask your oncologist if chemotherapy is needed ---- and whether adding a medication such as XTANDI or ZYTIGA is needed.

I knew when I was diagnosed, I needed a treatment plan that was proactive and aggressive.

I see my local oncologist every month like clockwork, and visit Mayo Clinic a couple times a year, for ongoing scans --- assessment --- and to consult with Dr. Kwon. Everything from Mayo Clinic is instantly shared with my local oncologist. Coordinated care, in action!

Each case is different, but this care plan works for me --- and I visit the lab right before I see my oncologist each month, so that lab results can be discussed at every consultation --- in person.

I have worked hard to assemble a medical team that looks to the future --- that is proactive --- that embraces the concept of teamwork --- and that includes me in every aspect of the process.

Keep us posted here --- wanting all the best for you!

CYCLONE ~~~ # Iowa State University

To those who answered the questions posed, THANK YOU! Most of the answers reinforced what I've read and been told by others. I'm already going for long walks (need to increase frequency) and lifting weights in the basement (also need to increase frequency). One of my concerns was potential loss of energy, which is why I asked if others took supplements/vitamins to help with that. I have had scans (bone scan, CT scan & Cat scan) and they did not reveal any tumors or growths. With my last blood draw, I had them also test my testosterone to get a baseline prior to starting ADT treatment.

To those who for some reason accused me of not taking it seriously, HUH? Not sure what I said that made you reach that conclusion. If I wasn't taking it seriously, I wouldn't have subjected myself to surgery or 40 sessions of radiation. If I wasn't taking it seriously, I wouldn't have joined this forum (and others) to learn from other people's experiences. Regardless, have a nice day.

Bill. The vitamins need supplements, I seem to recall being told by my RO to stay away from certain s[ecific vita,mins and supplements, but I can’t recall which ones. Worth asking your RO.

Also, there is a new drug that does the same thing as Lupeon but supposedly less side effects, no it’s. Pill rather than injection. Called RELUGOLIX. Might also be worth asking about, although I guess if you are starting Monday, it’s pretty short notice.

For recurrent PCa, you're likely to remain on ADT in some form for the rest of your life. There is a chance of intermittent therapy, going on and off of ADT as indicated via monitoring your PSA. But in general, testosterone will not be your friend again.

For those permanently on ADT, living without any sex hormones is difficult, with many unpleasant side effects. Either male or female sex hormones will work, but due to prostate cancer you may no longer have the male hormone available. So...

To compensate, you may find relief in low-dose estradiol transdermal therapy (skin patches, 0.025 - 0.05 mg/day, typically changed twice weekly). These can relieve hot flashes, fatigue, and if you get your blood estradiol (E2) up to about 50 pg/mL can also protect your bone density. It's something to discuss with your doctors, though few seem aware of its application for men in this situation. Dr. Charles "Snuffy" Myers used this in his practice for patients on long term ADT.

I might also add that the newly approved psma pet/pyl scan might give you more insight than the previous generation of scans.

Most of the way the through a six month Lupron shot. SE minor — a little flushed few times a day, probably fatigue more often when doing outdoor gardening or walking. Had Lupron six month course nine years ago — gained 20 lbs. Determined this time not to let it happen — have lost seven pounds by being careful about input. For me, easiest route was cutting way back on drink. All and all, Lupron not so bad, except the part of having all the sexuality of a lawn elf. Best wishes.

Largebill,

I walk in "old man" black walking shoes. Very comfortable.

I'm curious, did your post surgery pathology report come back with G7 (3+4) -- the same as your biopsy? I hope you didn't get an "upgrade," like I did.

Stephen S said...
Exercise/exercise/exercise, including some weight training at the gym paying attention to your long bones in arms/legs.

For me….I felt tired like I needed a nap, but I hadnt done anything to bring that on, so I knew it was the Lupron. When i felt tired i started to move. Mow the lawn. Vacume. Go for a walk. Avoid the couch unless you know you did something to actually make you tired.

Doing that kept the hot flashes away for me.

I agree with Stephen S. - Every time my husband sits on the couch he falls asleep watching TV with me. Stay active! (My husband's PC is more aggressive) He will be on Lupron for the rest of his life. He has not gained any weight. He walks at least 10 miles a day, plays golf and goes to the gym all of this while working full time. I wish he would vacuum! Do what ever makes you happy and stay active.

The moderators might nail me for this. If that happens, no problem. I found the Rockport World Tour Classic walking shoes to be the absolute best. I have done great deal of walking, always comfortable.
Mr Bill

Throughout the course of my treatments, I had a total of just two Lupron injections, one 30-day dosage (just prior to low-dose brachytherapy), followed by a single 90-day dosage (just prior to IMRT or beam radiation). For me, the noticeable side effects didn't happen for about 2-weeks, and they included the usual (i.e., fatigue, hot flashes, night sweats, etc.), but oddly enough, one of the more prominent effects for me were vivid, sometimes horrific dreams. I haven't seen too many others report this particular side effect, but they were frequent and quite bad at-times, so needless to say, I couldn't WAIT to get off that stuff!