Advanced Prostate Cancer
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Living with and Minimizing ADT Side Effects

Newly diagnosed on 11/11/17, I'm on hold until I see the docs again after the first of the year, but was told to expect my first line of treatment to be ADT (Lupron, Zytiga, and prednisone). I can read the list of side effects for these drugs, but what is it really like to live with this treatment? Will I be able to work? I'm an executive coach and corporate trainer. Am I going to have the energy to fly around the country? Am I going to forget my lines in front of the room? Should I cancel work I have booked in the first couple of months next year while I adjust to the meds? And what, if anything, have people found effective to minimize side effects (especially hot flashes, cognitive impairment, energy levels, depression)?

I know many people have posted about their experiences in various posts, but it would be helpful to have them in one place. What was your experience like when you first started treatment? What was the adjustment like? Thanks for your help!

Robert

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Others have had different experiences, but mine is that the fatigue and hot flashes didn’t really interfere with working. You should allow yourself to rest if needed, but most of my fatigue came later in the day. The brain fog was a concern for me for a while. It started with missing a word now-and-then in conversation. After several years, it progressed a bit. I was a lawyer, and I was concerned that brain fog could lead to malpractice issues. I see my medonc quarterly, and this was always a touch point. If you’ve seen my story, you know that became worse this year and was part of my reason for seeking disability retirement, but that was after ten years of treatment.

I could see where the travel and treatment could lead to feeling worn down. If that happens, maybe you can take one fewer assignments each month or something like that. Unfortunately, part of your future involves developing coping strategies, but you’ll be able to find them. Good luck with it.

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Thanks very much for the reply. That's reassuring. I'm sorry to hear that things have gotten more challenging for you (I read your latest post) and I'm wishing you the best. Be well.

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I Have yet to start Zytiga but have been on Lupron for three years. I also took prednisone while I went through my chemo treatments. Lupron has caused me to lose 25% of my body strength. ( I lift). It also caused my 5 mile runs to go from a 8:30 pace to a 9:50 pace. As far as energy level, I continue to keep pushing forward, running 4 days a week and lifting the other three. At age 67 I can bench my body weight 60 times, ( 12 reps, 5 sets) in 15 minutes. I have always been an exercise freak so my energy level is probably a lot mental. As far as depression, I watch classic rock videos and read jokes to keep my spirits up. I'm in no way affiliated with the medical field, just my personal experiences so far. A proper diet would more than likely keep you feeling pepped up. I ran in 80 degree heat while undergoing chemo treatment and getting pumped full of Lupron. Drive forward, don't let anything stop you. That's an order! (coming from a retired First Sergeant). :)

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Thanks, nameless! And very impressive bench.

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Exer1 is best to ward off side effects and not focusing on them. Works for me. Of course I worked out all my life. Now at 79 , just for maintenance , circuit train with weights some cardio. Always pushing to conquer the fatigue and cognitive function to conquer brain fog. Have to use it even. More to lose less. Hope this helps some. Rocco

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Hi Robert, I was diagnosed Feb 2016 at 46 years old and its been a hoot....NOT! There are guys on here that have been dealing with HT for several years and it has helped my mind set to see it through. I am an Operations Supervisor and dealing with people is a huge part of my job. I'm not going to make things sound all okay because they will change for you. You will learn how to deal it but sometimes it can be challenging.

The hot flashes just plain suck. They always seem to come at the worst times and I can feel them coming now so can kind of prepare myself when it happens. I also purchased a small fan to put on my desk and it works wonders. It is very seldom i wear long sleeve shirts anymore and find it much easier to bring a light jacket I can just slip on and off at work. I also opened up to my fellow workers and told them exactly why it happens. They have been very supportive and you will be better off putting it out there. I can honestly say I haven't slept over 3 hours in a row since Lupron. Most nights are spent kicking covers on and off while flipping pillows to lay my head on something cool.

I'm lucky enough to have a job where I'm not tied to a desk and moving keeps me with energy. When sitting idle its not long before my eyes get heavy. I drink a cup of coffee in the morning and one in the afternoon to help give me a boost.

Keeping my mind active by reading and with work helps a lot to stay sharp. I never missed a day of work through chemo and found working overall has helped me with the healing. It gives me a purpose and it helps to focus on something other than cancer.

The most important thing I can tell you is continue to do the things you love regardless of side effects. Defy and overcome the challenges and you will feel stronger by doing it.

Ron

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Thanks, Ron.

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Kick those covers off and pray for a nor-Easter.

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Hello Robert-E

I am on Lupron and casodex , hormone therapy I can handle the hot flashes and sometimes feel cold because of the sweating and makes the air cold after a few min. I have been dealing with alright, but I am a musician and the last time I played on stage I had memory lapse trying to remember words or chords, only got worse the more I thought about it and one of the band members heard me screw up. I have one more gig for New Years Eve and I have decided if I have still have the memory loss ,I will probably not be performing while I am going through the Hormone treatments , and I am practicing a lot going over the songs and trying to make it a habit so I don't think real hard about it because it seems to make it worse for me. I am hoping this tactic works. I guess its different for each individual , I think we can over come this by rehearsals.

Wishing the best

RobertLeeb

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Thanks, Robert. I hope the rehearsals work. Good luck with your New Year's Eve performance!

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Music soothes the the soul!

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Thank you LuLu700, I practice my guitar everyday for positive thinking, and relaxing music for meditation. I started flow max and thats working too.

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Flooomaaaax ...I did it pre dx for awhile. Not my favorite..As long as you’re peeing. That’s the main thing. They never taught this chemistry in school. should of learned to play guitar. Hope you fare well,thru the holidays.

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The Flow max started to give me headaches and dizziness. I decided to get off of it because my blood pressure was high, had to go to the Er to bring down, doing good now and started on Linsinopril last week. blood pressure under control

robert

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yea I'm trying to think not to hard about it , I am glad everybody in the band sings lead so the pressure with singing will be less.

Thank you Robert-E ,

My Best

Robert

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I think you'll be just fine. I wouldn't worry about it at all.

I've been on ADT for almost a year and did 6 cycles of chemo ending just a few momths ago. I'm writing this from a hotel room in Mexico, I traveled there to repair a linear accelerator so people can get their radiation treatments. That's what I do for a living. I haven't lost my mental ability to troubleshoot these complicated machines and traveling has not been difficult so far. Haven't had any depression at all, in fact I'd say I'm happier than I have ever been. That is something you can work on.

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Thanks for that, very reassuring.

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I am not being facetious..You’re a miracle and blessedly minus those symptoms. That’s great!

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Robert, the first time I took Lupron, it did not affect my mind as much as the second time, 6 years later. It did then as well as muscle strength and fatigue. I finally talked to my med Oncologist about provigil, it has helped. The other thing I did was talk to the Dr about intermittent ADT. , and we are doing that as well. Age may play a part in it too, I was 52 at the time of initial tx and 58 the second time. However, my tx was only Radiation and Lupron, no Zytiga and Prednisone too. Good luck!

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Hi Robert,

I'll share more details later, but I can tell you that my husband, who is 57, has not missed a day of work since he began Lupron in April. He finished six cycles of Taxotere in August and started on Zytiga in early October. And has walked at least 10,000 paces every single day since January 2017, when he was first diagnosed. The hot flashes are his only real side effect, and his MedOnc is still tinkering with drugs and dosages that address them. He views works as a healthy distraction.

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Hi Robert; I'm pretty new at this myself, age 75, diagnosed mid-July 2017 (4+4) and the urologist shot me up with Lupron at once. Two weeks later the oncologist added Zytiga to the mix. Had slight issue with hot flashes but that has faded. I occasionally lose a word, but that was happening before onset (you get clever at reconstructing your sentences). One thing to watch for: Make sure your stomach is really empty before you pop the Zytiga. I didn't pay close attention twice and my temperature shot up for about an hour (102 degrees at once point) and I had some violent muscle cramps. Thought about calling an ambulance, but symptoms faded to nothing within two hours. Things are pretty comfortable now, though I've got to step up exercising -- I can feel some weakness in my legs. PSA plummeted from 24 to .21.

Had some issues with liver numbers at 1000 mgs of Zytiga. Oncolgist took me off it for a week and tried 750 mgs. but numbers were still off. Now doing 500 mgs. and things have been fine for several weeks. Asked oncologist today if 500 mgs. was enough to do the job and he said it should be okay, that they went with 1000 mgs. because that was the quantity used in the trial that showed the effectiveness of early use of the drug. I do a blood test before monthly refills and will add a PSA check to that for monitoring.

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Almost identical symptoms as Yostconner. Fatigue most of the time but mostly in the afternoon. Sometimes find myself searching for a word or name that should be no problem but is. Luckily I have always had memory tricks to use. I doubt you will be able to keep up a vigorous weight lifting routine. But you have to do what you can. Keep going to the gym and push as best you can. Do what you like and stay away from 20 something personal trainers! I think I’m losing a little more hair too - great right - but we deal. Caffeinate. Concentrate. And pray a lot - lol - couldn’t rhyme that last one. Good luck.

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Good Morning Robert-E,

What I can offer is 5+ years in this war. Please see my bio for treatment history, as I have done it all, except for bone mets.

The main thing to learn is that everyone is different--none of us have had the same treatment sequences and all of us react differently to the drug combos.

The 2 specific things I might recommend are:

1. Wisconsin American Ginseng for any fatigue issues. Google it and a Mayo Clinic trial. I buy it directly from the Co-Op in Wisconsin.

2. Dr. Charles "Snuffy" Myers prescribed Vivelle.dot estrogen patches for me to moderate side effects of ADT. I would wear 1 for 3 days and exchange for another for 4 days. Risk with these is potential blood clots, so if you travel extensively by air, get prescribed compression socks, walk during extended flights, and have your INR clotting factor checked by frequent finger stick blood tests. It got me after a trip to and from South Africa, but that was a 15 hour non-stop flight! Have been on various anti-coagulants since and stopped Vivelle.dot.

If you are on the Zytiga/prednisone combo for an extended period (mine was 1 1/2 years) expect some face swelling over time from the steriod prednisone. It goes away when you stop and taper down from the steroid.

It would be helpful to all of us if you could provide diagnosis stats-PSA, Gleason, scans, age, etc.

Best wishes. Never Give In.

Mark, Atlanta

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Exercise and plenty of sleep. I also get relief from hot flashes with Gabapentin. I know that it doesn't work for everyone. I'm currently on my third year of Xtandi without any other ADT.

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Thanks for the responses, everyone. Much appreciated and very encouraging. Best wishes to everyone.

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If you read the warning labels and take the doc's list of side effects seriously, you'd never get any treatment - too scary. Everybody is different and no two people will react the same way. My reaction to lupron was just hot flashes - and that didn't even get up to the nuisance category. Just sort of "isn't that interesting." Others have had it worse. I'm currently on chemo (taxotere) and just minor fatigue. Listen to your body - you can always stop if it gets too bad.

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As others have mentioned, sleep can be an issue. I had hot flashes ... and cold flashes. A ceiling fan is helpful. Don't be shy about asking your doctor about meds to alleviate the hot flashes or to help you sleep better. I kept up my exercise program and didn't experience muscle or strength loss. Weight lifting is also good to maintain bone density and strength. Look into supplements like vit K for bone health. Good luck.

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My drug program was/is a little different--My Lupron Shot was substituted with something called a Vantas Implant---it is another Testosterone suppressor, but the drug is released daily, without much side affects--as to male menopause. You will regardless of what you take get some afternoon fatigue---but less with the implant. And down the road, you sometimes loose a word, when speaking. I give lots of speeches, and I sermon--and I never have a problem---I always can find a substitute word, if I lose one. I have no fear, and relish being in front of a crowd speaking. I have 2 years under my belt, with ADT---and it was only with in the last 6 months that my strength level in the gym started slowing down. If you stay in the gym 3 times a week, you will feel better than not going. I am 74--and I just got back from the gym, and at 190 lbs, I was Pressing 250 lbs in the Chest Press machine---and I have about zero Testosterone---So those are keys---ask your Doctor about the Vantas Implant---a lot of Doctors do not like to use it as they make more money giving you shots of Lupron---as the Vantas lasts for 15 months. But your program, with Zytiga and Prednisone---might require the shots--My ADT program is what I call-- ADT6---Vantas, Casodex, Avodart, Proscar DIM, and Arimidex.

Good Luck--fear not---Happy Holidays.

Nalakrats

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Oh, I forgot to mention one other effect of my six month eligard (ADT) shot -- boobies. Gynecomastia. There is the possibility that radiation of the breast (nipples) area can be useful in preventing this problem. I am miffed that my inquiries about this preventative treatment were dismissed as being silly or of no consequence. Inquire about this preventative treatment and see what kind of response you get. A urologist is not the type who can provide this -- but should know who can. Just be aware that research has been done in this area and it is an available treatment. Check it out. I wish I had been more aggressive in pursuing this but at the time, I was in shock and back on my heels at the diagnosis.

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Welcome to the club! Some men adjust better than others. This is a battle with self ..With time I’m feeling better about my being stripped of that male hormone,and knowing that if it ever returns it’s bad. I believe the younger that one Is , the harder to accept the losses. loss of testosterone. It depends on your severity and if you undergo other treatments as to how much symptoms you’ll suffer Personally ,I’ve persued naturalpathic remedies as well. I recommend high dose C &B vitamins thru I v and all natural methods to feel better and extend life. Exercise as well as diet , keep love and good people around and you will have success. You seem like a man that has a lot to live for. You have resources to fight this and I predict that you can kick it down the road and continue to enjoy life. Chemistry will change Nothing easy about it. You will prevail. God bless!

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I will join the chorus - exercise is the best thing you can do. And good diet.

I stopped working when I started ADT in April this year. My goal was to manage my health and working 10 hour days plus 2 hrs of commuting was NOT the best way to achieve this.

I walk for an hour a day, play tennis a few times a week, do light weights training (dumb bells only) and lots of gardening. Since I have time to prepare proper meals I am eating lots of fresh fruit and veggies. As a result side effects have been minimal apart from total ED. I get occasional hot flushes but nothing too dramatic. My wife thinks that I am calmer now but I thinks thats because of lack of worse stress.

I see from the responses before me that many men continue working. No way could I manage that and maintain my health to the standard that I have. I admire all of you very much.

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Hi I was diagnosed March time Gleason 9 mets to lymphs in chest at 47. I was put on Zoladex with Zytiga and Pred as initial treatment. It is life changing but I’m still here and doing well. The fatigue is hard and flushes a pain in the butt and muscle wastage does occur, however it’s still possible for me to live a relatively normal life. I find if I do very physically demanding tasks the following day I’m worn out but it’s imperative you push yourself. It is possible to work but there may be days it’s hard mentally and physically. I walk everyday and do light weights to try to keep the muscle wastage under control. Stay positive and see your cup as half full and you won’t go far wrong. We were lucky to get our cancer diagnosed before it was to late to help us. I’m sure you will be working for many many years to come. 👍

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Robert E, you have received a great deal of useful descriptions of other guys' experiences, as well as useful advice. I think it was Stegosaurus who said everyone is different.

We don't know your age, Gleason score or PSA at diagnosis. My story is that I was diagnosed at age 61 with a Gleason of 3+4=7 & an initial PSA of 60.7. Back then (2003)l, the usual drill was prostatectomy, radiation if it failed, & Lupron if that failed. There was no Zytiga or Xtandi or Xofigo yet.

I was working as an attorney for the state agency that handled the licensing of child day care facilities & children's residential facilities. I was passionate about the work & absolutely had to win my hearings if I believed the respondent was a physical or sexual abuser of children. But my diagnosis & the fear of losing many years of life wore on me. I found myself in a hearing where opposing counsel put on an unexpectedly strong fight against my case in chief. I rallied & basically won during the respondent's case. But I had been fighting these cases for many years, & decided it was time for a less pressure-filled assignment. I became a supervisor & also researched some issues to improve our cases.

When I learned I had micrometastases to some of my pelvic lymph nodes, I had trouble sleeping. I went on Trazodone at bedtime. After a year, I saw a behavioral medicine counselor & nurse practitioner. I told her I thought I should be able to wean myself off the Trazodone but wanted her advice. She told me there was no problem in taking Trazodone at bedtime for the rest of my life, & that I needed it because my subconscious knew I had a terminal illness. Then she redirected my attention to "the real issues." After more discussion, she said that since I knew how to have fun, the best thing I could do for myself was to retire so I could have less stress & more fun in the remainder of a life that seemed like it would be relatively short. Stress hormones feed cancer, & pleasure hormones do the opposite. I immediately got a huge grin on my face because I knew that was the right answer for me, despite how much I loved my work. I asked my wife if we could afford it, she crunched the numbers, & said yes. I kept working for several months to complete some projects, & retired shortly after I turned 64.

The advice was absolutely right for me, & has helped me live far longer than the oncologists were predicting. So have the drugs that were approved more recently.

When I went on Lupron, I had annoying hot flashes. I asked my urologist & he prescribed Megace, which took care of it. I may have read something that advised against using it. In any case, I stopped & have had no hot flashes for the last decade on ADT. When Lupron alone failed, Casodex was added. When that failed, Zytiga was substituted for Casodex. I had only minor fatigue all those years. Recently I went to Xtandi. The fatigue on 4 softgels was huge. I went down to 3 & it's more bearable, but still rather strong. It hits me after my 2nd meal of the day, & continues.

So my advice is that if you know how to have fun & can possibly afford to retire, do it!

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