Good health to all of you. I came into this group just after I was diagnosed with a PSA of 49 and a Gleason Score of 9. I've been on the Lupron for 3 months and am seeking a second opinion on Surgery. If surgery is ruled out (There is some cancer on my seminal vesical) then I'll start radiation. I've already had the markers placed.
I'm very focused on getting better but I'm also very sad and full of grief. The Lupron is doing all of its things; I've gained 20 pounds, I'm completely impotent and I tripped when my back leg caught going over a log. My muscles are waisting. For the first time in my life, I've noticed what could be called "Good days and bad days" and even this is frightening.
When I was younger I ran a marathon, played rugby and ice hockey. I always considered myself a pretty rugged, testosterone-driven man. I'm grieving that loss. My wife insists she is actually quite fine giving up sex and this just makes things worse.
How do you cope with this sense of loss? How much is reversible?
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EricE
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Well, I also use to run marathons, etc. Lupron put an end to that. Now I go out 4 days a week and put in 4-6 miles per time out. As far as muscle wasting away, lift your rear off to offset the effects. In three years on lupron i have lost 25% of my upper body strength. You have to fight back and most important, never give in. Bottom line is this, your life is different and you have to adjust. Have you given any thought to the reason you put on 20 is because you no loner engage in activities like you once did? Start a program, run, lift, walk, etc. don't let the lack of testosterone stop you from being physically active. Now get a daily plan together and kick some ass. Your mind can force your body to do things it thinks it can't do, I know from experience.
Hope the 75 days journey in being 1st diagnosed has you settled down.
I was 1st diagnosed on 28 October 17.
The first 60 days or so I was trying to get my footing right.
Following more discovery of current conventional therapy as a means for extending your life and not a complete remission I have opted for initial trial using Vernon Johnstone baking soda/honey (I replaced the molasses) for 5 days 24-30 December 17.
I think it is quite effective as I can vouch how my body reacts. Then I encounter Gross Haematuria when I played golf ss well as working. I had my blood & utine checked 2 times 2 January 18 & 9 January 18 and blood test shows all important elements in normal range and no infection.
My lucky break when I stumbled on high green tea pH 8.0-9.0 leads me to my hypothesis.
Hence I am pain/fatigue free and able to engage in sex as well as eat/feed liberally and continue to enjoy this quality living.
Hope I do not bore you and thanks for your patience.
Hi Eric. Yes it is a tragic change we go through. Being on ADT is really a bummer. I after 7 years have intrest in sex but my little guy is just that. Before you go to long consider injections and even an implant before you shrink to nothing like i have. I have an intrest in sex after 7 years but nothin happening even with injections. I shrunk to 2-3 inches and dont think an implant can make any of it up. Keep what you ghot at any cost! As far as being strong well do exercises and all to keep in shape. Thats my 2 cents
I wish I could help you feel better. I know my husband is not happy with the changes he is dealing with. I am just happy to have him alive! We have added a lot of good diet changes and alternative therapy such as regular ozone saunas.. these help him feel a lot better. The sauna helps him feel energized. We also have some high power ginseng around when he is really feeling tired. Perhaps adding a regular routine of massage might help you feel better ? Meditation has also helped him a lot... meditation classes can really help bring you with other folks trying to add peace. We have really enjoyed them. Sending tons of hugs and prayers!
Hi, my name is Lynn I'm with you! Just happy to still have my husband alive. It's been a real roller coaster ride, started at age 65 and is now is a young 74, did great for nine years, came back this past year with a vengeance, my husband is the strong one not me so much. I try never to show how upset I get Infront of him. Also sending lots of hugs and prayers to all my new friends.
Sincerely, Lynn
I think many of us here can relate to the sense of loss you are experiencing. I know how you feel. Many of us do. It's a real challenge to move beyond the losses, but I learned that in the midst of the loss, there are also new things to be found.
Many of us have had to continouosly adjust to the "new normal" that we have forced on us. I know it's hard and we do need to mourn those losses.
So I would encourage you to look for those new things that give you back that peace of mind, meaning and enjoyment in life. They are there waiting for you.
Your feelings are totally normal and we have all felt like that. The frustration and loss I went through was horrible but I just kept walking forward and eventually I started to feel a little better. Keep up exercise and some weight bearing stuff if you can as it can help in the battle of muscle wastage. I now feel lucky to be alive and as I’ve accepted this path in my life I’m less angry about even the sex thing! You will be ok and learn to live with the rollercoaster of emotions. 👍
Thanks. The diagnosis really rocked my world but maybe my world needed a little rocking. I'm trying to recognize and appreciate the trade-offs like the outpouring of support and that I now know how precious life is. I was sleepwalking through life. Now I'm not.
Join the club! This is aWake up call that you don’t want to miss.. We must find different ways to be a man without our libido or ego. Our self worth is not based on sex. That’s only one of our many ways that we identify ourselves. Everything smells like onions to you right now. We ve all been there. Not knowing the future. Anger; fear I ve struggled and still have moments of madness everyday. But there is much hope for us. You can get to a point where you will feel better.. It’s taken me 3 yrs to start to accept my lot. Too soon to count losses there will be more to come. None of this is easy. Some fly through treatments with little side effects others not so much. After treatments after recovery when your Psa is 0 , then you can take time to smell the roses. An Appreciative attitude benits all . In reverse once we show negativities to those around us it not only hurts them but I can destroy us with bad hormones that suppress immunity. Now is the time to take better care of yourself than ever before. You ( CAN ) do much to help yourself. This is not the end of you. Not yet. A lot depends on your actions from here out.. Good you found this cite at the beginning. So many years of experience here. You’ll know more about this then you ever wanted to. Its all a wild chemistry project gone wrong.. stay ahead of it for as long as we can , hopefully for decades .
It's great that you are already seeing one of the greatest gifts you can be given, a deeper appreciation for life. I've never savored each moment of life as I do now. I wish I could have learned that earlier, but it's something that only a disease like cancer could teach me. Cancer has taught how me to fight, how to fight for a life that's so incredibly valuable. And when you have to fight for something you always appreciate it more.
Cancer has helped me to realize what's important and what isn't. It has really sharpened my focus and "stripped down" my life to the essentials. I'm travelling much lighter now and finding that in some ways I've been freed up to experience life on a much deeper level. Sometimes I feel like I'm naked, out in the cold and alone. But everything is more intense now, the ups as well as the downs. I might be losing my life, but I also found it all over again. I found that life is more meaningful than ever before.
in reply to
You could publish this paragraph to inspire cancer patients.. Very positive.
Thanks. I'd love to share more of what I am learning through this process. My philosophy is that life is one big school and we are here to learn so we can develop.
What you are feeling are quite normal. After my diagnosis in Oct17, I went thru a period of grief, fully realizing "future ain't what it used to be". All future "plans" now on very shaky grounds.
There's a VERY powerful positive feedback loop between exercise, healthy diet, mental health and physical response. I immediately changed my diet to a modified vegan/Mediterranean. I exercise 5-6 times a week, and I did talk to a psychologist with my wife trying to address my grief (not to mention her mental condition of having to deal with all this). I saw an ED doctor immediately and was put on medication and now injection.
It's all easier said than done, I realize. Keep in mind that diet and exercise are not simply good ideas. You should think of them as a formal prescription coming from your medical team. You need to find the strength to do it, for your sake and for the sake of those close to you. You will be amazed by the difference it makes to you overall health.
I doubt if you can find many men on ADT who do not experience ED. You and your wife both need to read up on it. It is NOT the end of your sex life. The quicker you act, the less permanent damage will be done to the hydraulic system.
Finally, and probably most importantly, focus on your mental health (all i said above helps it a great deal - at least it did for me). Try meditation. There are smartphone apps that I've been using and I have to admit it helps (takes a while to get used to them - I never did anything like it before). There's no shame setting up a session with a cancer pscycologist with you and your wife.
You are expected to live for years and decades to come with the existing treatments and the new ones to come. Don't despair, get out of the house for a nice walk and breath in the fresh air.
Hang in there! I have been on Lupron since the summer of ‘16 with Zytiga added this last summer. Yes the side effects suck. (I really want to use another word). Before I get to how I am coping I will let you know how hormonal treatments have effected me.
I no longer can ride 80 miles in a day. Doing 30 pushes me to the brink. At the Y there are now ladies that can lift more weight than me. I also gained over 20 lbs. actually it is a lot more fat gain than that when you take into account the muscle loss. Of course major fatigue, joint pain and hot (and cold) flashes. Also, my wife is “just fine” hugging.
I am not the man I was two years ago. My “secret “ to dealing with it is focus on what I can still do. I get enjoyment out of pushing myself to do 30 miles, to go “car camping “ instead of backpacking, to focus on the weights that I am lifting not what those around me are doing. It does not make me less of a man. In fact, I feel that am am pushing myself harder than at any other time in my life. That the old me does not know what it means to really struggle to achieve an objective. You were a marathoner. I respect the man that has to overcome issues, for example, the loss of a leg to finish the run than a 20 something where running comes easy. To that end, when working out or doing something physical , I wear a hat or a tee shirt that states I am an advanced cancer warrior. Not to get petty from others, but to remind myself that I will not let cancer take everything away from me. I will fight it every day!
I do not know if the above makes any since to you. I guess we all have to come up with our own ways to deal with it. It may be Pollyanna but I rather be were I am now and be with the ones that love me than to worry about what I can no longer can do.
I hope that others can do a better job of giving you advice than I have. Please remember that we are all in this together. People like us we have to stick together!
I have the same SE’s as you except I’ve lost 30lbs instead of gaining. Ain’t it grand! Your spirt and attitude are much bigger than PC .. That’s for sure. Thanks Dr_Who!
Thank you, everyone. I'm pondering each and every reply and I appreciate them all. Today is indeed a brighter day in all respects. I know from experience that the grief I don't acknowledge gets buried, so right now I am grieving. I have no intention of giving up.
I live in a beautiful place and walking the trails in the area is great. I've started going for the hilly trails to keep my legs strong. And I'm digging out the exercise bike though I prefer to exercise outside with the dog. I'm finding, as one would expect, that most of the noticeable wasting is in the big muscle groups.
My wife and I are already vegetarians (for the most part) but I'm trying to go with as many raw foods as possible. One person advised that Asparagus was particularly good at removing toxins from the body so (Why not?) I'm eating lots of asparagus. I like it actually
For the upper body, I already play the Great Highland Bagpipes so my shoulders, hands, and arms are taken care of along with my respiratory system. If I end up going out of this world it will be with the drone of the pipes to the left of my ear where they belong. I won't quit. I promise.
As for the sexual problems, we're going to work on it. I think the ideas of a PC counselor for us both and a visit to an expert are great ideas, as is meditation which I'm accustomed to. I'm left to ask myself "Is it all worth it just to get an erect penis?" my wife would say "No" and I'm not far behind her. I'm not sure I want to put myself through that. Any ideas?
Thank you all for your kind words and understanding. I will try to pay them forward as I adjust to this new version of Eric. "Eric 2.0".
You have love.. everything else pails. I too am blessed with a genuine love. Hate to go it alone. Priorities will change . Maybe TMI but I found madturbation at 14 and never stopped having sex or the other up until I couldn’t pee.. 40 yrs of activity.. can’t sat I missed much . The head trip is our partners outlook. I want to please my partner. The most important thing to me is close intimacy with unconditional love. That’s priceless. Human touch heals.. Bad ass bagpipes and beard. You are going to kick the s### out of Pc . But it kicks back. Our nemesis....
Eric, after reading your post and replies ,I think you will do very well. The shock and fear wear off after a while as we realize we can live and things get better,and knowing that life is good. I wish you the best, and know that we are all here for you,please keep us posted. You really do live in a beautiful spot, Sequim is the sunbelt of the Olympic Peninsula.
Your words and story are hauntingly similar to my own just 1 year ago. At such point, and after extensive study into scientific evidence of the pros and cons of available mainstay treatment for mets PCa, I decided to bail from Lupron and any other such castrate therapy, including intermittent ADT. And no I will not entertain intermittent Lupron shots either.
My testosterone production returned to the same level prior to surgery and ADT therapy. Testes are downright plump. Sexual function returned. As has white and red cell production which dropped so low during treatment that I had to avoid filthy germ ridden places like the gym, which as been a second home to me since I was 15 years old.
Doctors advise that even with Lupron I will live about 5 more years. Without the shots I will check out in about 3 years.
These decisions are personal and individual. I chose gusto over a cardigan sweater.
Me too. My pursuits can follow a deteriorating body when the time comes. It comes for all of us after all. I like to read, watch tv, walk. There are also friends yet to be met. I'm not sure I would make that choice but I understand and respect it. It is courageous and I know others who would make your choice. I just can't bear the thought of missing what's around the next corner.
Now you’re talkin! That’s hope...stay into your music and the stuff that you love already, your wife, nature, that’s what I’m doing. strengthen your bonds with others.Although I’ve had to cut out negative relationships .A very small family circle now. I fought myself with self loathing and fear, anger and all of the bad emotions. I wasted much strength on yelling and screaming near madness.Guess who took the brunt of that b s? Yah , my sweet angel ...gets worse .we dated 2yrs ,married upon dx with tubes and a foley . Both of us were Petrified with fear of the unknown. . I saw the dead end off APC from the get go. That’s why I know you can conquer your status and change it for the better. I’ve done better then anyone expected. You can too.
Dear Sir, you can not hinge your life on what dismal remarks your Dr has spoken. Don’t believe that BS! They told me 39 months with Adt and 12more with chemo, RT was chosen instead. .ive been clear the last 2yrs of 3yrs of treatments and side effects.
Eric: I should include the following addendum to my previous reply.
...less than one month following a my decision to forego castration therapy, my wife of 42 years, seemingly in perfect health, was found to have late stage pancreatic cancer. 30
day survival rate about 50%. Surgery not an option. Chemo pointless. Hospice yes, thankful. Morphine yes, more thankful. She died at 62 years on 7/3/17.
The enormity of my decision was based in large measure on our mutual interest to maximize the quality of our time together.
I believe that like a war worn soldier, we can become increasingly calloused to the prospects of an impending departure.
We are all marching in the same direction. Some up front some years behind. This is an admirable decision if it is your strong belief. It yours to make. . The bond you two have transcends time...we all should have such love. 40 yrs that’s something..I feel, that you took care of her. Job well done husband. Sorry for her suffering. I can’t imagine how you feel! But your head is square on your shoulders.. Good luck to you and a prayer for wife also..
Sounds like you are already taking advice to heart. Good for you. My husband had his first Lupron shot in 2013. (stage 4 bone mets). But we agreed, after reading about the SEs, that we would do whatever it took to maintain intimacy. We have the 30 second kiss every night when I get home from work. We have added to the collection of sex toys. It is appointment sex, for sure. We plan 1-2 times a week. And, miracle of miracles, Viagara works well enough to have intercourse (his doctor is surprised too). But we laugh about the man boobs and the shrinkage. And he has gotten to take two holidays from the drugs And his orgasms returned! He was like a 7th grader discovering his penis for the first time
We do exercises with an app called Sworkit every morning and he walks 5-10 miles a week. His balance is not great. And we take vacations and spend money while he feels well. Because we know the Lupron will stop working someday. But we don’t dwell on it. His cheerfulness is infectious and helps me. He says we are all going to die of something—he just knows a little more than most of us
Live your life, live your life! And grab your wife and kiss her! Now is NO time to give up the joy of skin to skin contact. You need each other more than ever.
Thank you for your insight. 26 years of marriage and we still hold hands and plan "perfect kisses", a meditation of sorts where you put everything into one, passionate, non-sexual, "Bogy and Bacall" kiss. We're working on the other bits. I'm going to look for that app.
as i watched my husband dwindle physically, i helped him. we became closer working TOGETHER, both on our farm and in our business...one that required a clear head and a back of brawn. when we were actually forced to give up sex, not just because he was unable to perform but because he lost all mental and psychological interest in intimacy, i told myself it was a small price to pay to keep the man i love beside me. before long, i gave it no more thought. at least i KNEW the reason. i have never felt cheated. it's been 13 years and i dread the thought of losing him. so far, knock on wood, we're cheating death, together. sometimes, it takes more than one person to fight one disease. this is one of those diseases.
I'm finding that out. I thought it would be easier but I have a wonderful woman whom I love very much and who cares for me deeply. I have no right to expect it to be easy. I'm already blessed. Thank you. Let's all keep on cheating death one step at a time.
My 'two cents worth' is to go for the surgery. My urologist/oncologist (and I) are believers in getting rid of that nasty incubator. I am 13 years post-op; robotic RP and recent robotic nymph node surgery. Still no drugs, no symptoms; last PSA was 0.64. I have previously posted my history if you are interested. Where do you live? My best to you, Ron
I feel the same way. I have a wonderful oncologist who encouraged me to see a surgeon she knows who may agree to do the surgery. The first doctor was also concerned about my weight but the oncologist felt that with my history of athletics and constant exercise, a little extra girth wasn't a deal breaker. We'll see but if I can find a doctor who will do it, that would be my preference. Get it out and radiation after if needed.
My question for the surgeon is: "So there's cancer on the seminal vesical. Strip it out. I don't need it" But it must be harder than that.
Eric, Where do you live? If you are in the States, I can make a recommendation. I would let my doc who is a urologist/oncologist/surgeon and professor at the University of California, Irvine campus, cut out any body part that he thought ought to go! Both of my surgeries were 'pieces of cake' even though two other surgeons recommended not doing the sacral lymphadenectomy because of the difficulty and possible complications. My robotic RP was performed on a Tuesday afternoon, home on Wednesday (no painkillers), and I drove down to San Diego Bay on Saturday morning and spent about an hour buzzing around the bay on my wave-runner. My lymphadenectomy was also performed on Tuesday afternoon (5 hours, completed at 8:00 PM), home by 3:00 PM on Wednesday (no painkillers), and I was on a plane late Thursday afternoon headed to Phoenix, AZ (with a 4 hour layover in Las Vegas) to spend the weekend with friends. I am neither impotent or incontinent; however, my libido has decreased in the last couple of years...most likely due to old age.
I'm near Seattle. I've got an appointment with a surgeon my oncologist recommended as a second opinion. If that falls through I don't know. I was diagnosed in September and am on nothing but Lupron. I'm eager to get started so if my second opinion says NO, then I feel like I should start radiation. I already have the markers in place.
His name is Dr. Thomas Ahlering at UCI...you can Google him. I was his 225th robotic RP patient; since then he has performed over 2000 more robotic RPs. I live in Thailand and he has kept in close contact with me over the years keeping graphs of my PSA results. We have exchanged dozens of emails over the years and he has answered every question I have ever had within two days. If I don't send him my PSA info every three or four months, his office sends me a reminder. About a year ago when my PSA reached 1.0, he asked his secretary to arrange a time when he could talk with me on the phone...we talked for 35 minutes; he charged me nothing. The day after my LN surgery when he came into my room to discharge me, he sat on the bed and bs'ed with me for over an hour. No question in my mind as to what doctor to use!
Hang in there. It is a rough wake up call. I started this at 41 with a rising PSA, 42 Dx with Gleason 6, 43 second biopsy (fusion), found 2 cores less than 35% with Gleason 7(3+4), immediately had surgery. The entire time, it was "this is the slow stuff, you'll be fine". Surgery changed a lot in quality of life, but got through it.
16 months, later I have a re-occurance, at it got real, real fast. One more shot at radiation, then into the 'no cure' camp. I have 2 kids 7 and 10 and the future changed over night, 44 and no certainty about anything.
But then you need to just move forward. These boards are fantastic. Into month 2 on ADT (firmagon, T dropped 85% in 2 days). But exercise and diet really do work. I keep a rigorous program. Learned about supplements like Vitamin K2, in addition to D3 and Calcium prescribed by my oncologist. This place is a wealth of information.
Also, I have a good friend who at 39 was diagnosed with Stage 4 Melanoma, everywhere. Had part of his lung removed, colon, etc. Went on the trial for Keytruda and his last PET is clear, he is back in action. I work with the life sciences industry (not in a pharam but on the technology side). Whether it is compassion or greed (6 figure treatments), I can say confidently, every biotech from San Fran to Boston has some type of CAR-T, radio therapy, experimental delivery system focused on cancer in their pipeline. Lot's don't work, but some do and I really believe there is promise in the future.
Indeed. One day at a time. And I was pining for my youth with a diagnosis at 54. You are much too young for this. I'm sorry but glad to be a comrade. Hang in there.
It is nice to see such outpouring of love and support that this site and the members provide. I adore my husband and am so happy for his desire to fight this fight. We will march this march together, hand in hand. Thank you, Honey, for your strength and humor. They will sustain you. Thank you for all of the replies and words of encouragement.
Gee If you can play the bag pipes then you ought to be able to laugh. Laughter, Laughter and more Laughter, that's what you need to beat that #&!*^(#&^% ing cancer.
I kept saying to myself "why me?", "why me?".... so one day I looked at the heaven above and cried out "why me?" and a voice from above answered "cause you piss me off".
Hang in there and I mean that literally.... Big Bill is now Little Willy.... just think you can be in church and not feel guilty since Big Bill can no longer pray about the good looking woman in the pew up front.
So in every cloud there's a silver lining and yours is to now live life (and laugh) at it's fullest.
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Hmm… This post may get me banned from this great forum, FOREVER!!
Mikes journey seems to be in the final stage
Body changes after EBRT and Lupron
One year and change... and change... and change 
Resitance to Abiraterone - forever resistant?
