New Here - first post

Hi there. New to this site. 55 years old. Diagnosed age 53. Gleason score 10. Had the radical, found out had already spread. Then chemo. Lupron failed 5 months post chemo. Now in a study at national cancer institute. still on Lupron. study involves enzalutamide and two immunotherapies. I hate all of this. Not sure if I'm going to continue to treat or not. The treatment side effects are brutal.

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  • Joel,

    I'm sorry you're thinking of stopping treatment. Can you discuss the side effects in case someone here has encountered and dealt with the same?

    Yost.

  • exhaustion. I'm so tired all of the time. heat flashes are bad but unbearable in the warm weather. I get angry and over emotional. and all the treatment does is maybe extend life without regard to quality of life. I can't imagine living like this forever. pain is there but not as big a deal as it could be. and it's affected my intellect, whether from the meds themselves or from the unbelievable fatigue. and with a gleason score of 10, you pretty much just wait until whatever treatment your getting begins to fail, which is brutal mentally and emotionally. like I tell my friends, this is less fun that I make it look.

  • I understand--and I appreciate the bit of humor in the last sentence

    I used to have terrible hot flashes with sweat running down my head for no obvious reason. They have gotten better, but it took a long time. I have gone through periods of exhaustion, though they have not lasted. Interestingly, I have a friend who is HIV+, and a couple of weeks ago we agreed that we both better understood now than we ever had before how some people get to the point of saying "I'm tired, and I'm finished." I use cymbalta to help manage moods. When I'm not using that or something similar, I have mild mood swings, and I lash out. I don't feel like it dulls me, but it does help even the keel.

    Other than medical approaches, are there things you can do to make life better? I shed the non-essential parts of my job so I could focus on the core and have more time for myself. I also decided to travel more.

    I do understand the feeling of just waiting for a treatment to fail. I have scans tomorrow that my lead to changing my current therapy (Zytiga) after a year and a half. As my friend Ian says, though, our goal is to keep going until there is a cure. I hope you can hang in there.

  • I too am a Gleason 10, I am 11 years out, Never ever give up!! Welcome to club, we have to stick together as Gleason 10 guys, pretty unusual gleason, learn all you can, and as far as xtandi Fatigue , sleep when you are tired, take it at night to reduce daytime exhaustion and sleep in a few hours if you need to, try to enjoy every day

  • 11 years, wow! I'm pretty sure I don't want to live like this that long. I've had a series of bad side effects. neuropathy. claudication of leg arteries. gross fatigue. not insignificant pain. and of course limited function recovery from the surgery. I keep going pretty much to try and out-live my parents. don't want them to have to deal with the grief of burying a child. I know everyone says enjoy each day, but its kinda difficult. i'm actually still working, but that's getting more and more difficult. I went very public with my disease and I do take some solace in knowing that because I went public many many guys got tested. but the emotional turmoil is a lot to handle and a lot to put my friends and family through. but i'll keep going. wouldn't want to disappoint my friends and family that think I'm a superhero. I really only let maybe two or three people know how bad each day is. my hats off to you and everyone else that shrugs it off.

  • Keep your head up. Treatments do suck. All of our plans and expectations have been altered. What we thought we were going to do in retirement has to be accomplished sooner. Trips to the doctor are stressful. But I have to remind my self that I am STILL here and that no one will work harder to keep me alive than myself. Had two life long friends die unexpectedly in the last couple of years. It saddens me to think that my friends left in a flash, but it also reminds me that my wife, kids, and friends still have me (for better or worse some days). Life is short, breath deep, and start living.

  • Joel.

    I would do the treatments....remember the alternative is pushing up grass forever...that treatment could buy you a number of years until something better is introduced

    Gus

  • Your post looked like I was reading my own. We are almost same age with similar diagnosis. I was diagnosed at age 52, Gleason 10, mets to bones now age 56. Although no surgery for me. Feel free to go through my post and you will see that quality of life is and has always been my main objective.

    I got on this site mainly to leave a paper trail for someone who has to go through a similar situation. I don't post often but I check in regularly and can certainly relate to other Gleason 10 club members as it is so difficult to keep a positive outlook.

    I will have no great medical advice (I leave that to others). All I can say is try to pick the best option for you as to your treatment and don't second guess yourself. No ones trip down this path will be exactly the same.

    I am now past all regular treatments and have very few optimistic options to pick from but as long as I can tolerate the meds and get what I feel is a worthwhile quality of life I'll keep trying.

    Hope you can do the same. Who knows the next med might be the one.

  • you should check out the NIH website. they list clinical studies and trials and if they are near you. i'm in a study there for the past six months. a lot of their studies/trials are available outside of Bethesda at NIH associated hospitals. worth a shot.

  • I think it is great that you didn't have the surgery. I wish I hadn't myself (Gleason 9s with meds to the pelvis post surgery). One nerve bundle left, but suffering from ED - the most frustrating side affect besides hot flashes.

  • I did have the surgery. 8 hours. brutal. wish I hadn't.

  • Joel - I also am in the "10 Club". I did have the surgery as you did (age 65). I guess my attitude was upon hearing that I had an aggressive cancer was "get it out!". Post surgery recovery as you probably know is a slow process. My situation complicated a bit more by the prostate tumor becoming attached to my rectum. I am still a little uncomfortable in the pelvic area and surgery was this past October. I had local mets to seminal vescicles (they were taken same time the prostate was). I have no mets to bone or lymph nodes yet. I was briefly on casedex and now getting lupron injections every three months while waiting for continence and then my radiation treatments. Does this suck? Hell yes! I get fatigued, my nipples area tender, my testis have shrunk (though am told when off lupron they magically get bigger and return to more normal size! Woo -Hoo!) NO hot flashes yet or some of other fun side effects of lupron. Don't ever wish to not having surgery and leaving that ugly beast there. We all wish none of us were here in this group. while we walk a little different path depending on our situation, we are still walking the same path ultimately and that is to go forward and live by treating the PC. wishing the best outcome for you (and all of us) and hang in there, you are not alone though it may seem so at times. My middle son graduated from high school this past week and damn glad I was there to watch! I have one more son to "walk" and graduate in two years. I will be there! They are worth any discomfort and pain I might have or feel. I had a great example to follow in attitude: My mother had breast cancer, a radical mastectomy followed two years later by bone mets and a hysterectomy and she was told she had maybe a year and a half to live. This was in 1972. she had fairly young kids at home (siblings yet in high school) and had the attitude of needing to live until they were graduated. She passed away January, 2016, at 92. so she lived with her breast cancer for about 46 years. Lets hope we all get many more years! Keep a positive attitude!!!

    David

  • welcome to the Gleason 10 group.

  • I am in a similar position although I found the chemo and ADT works now. Life all not pleasant. I did walk my son down the isle. Played with the grandsons. Ran my old toy trains. I live one day at a time and try to enjoy each day.

  • I've found face-to-face support groups to be quite helpful. Nothing beats talking with other men who "get it". Here's a tool from UsToo to look for affiliated Prostate Cancer Support Groups in the USA, by State. There are two groups that meet in Bethesda, Maryland near the NCI Campuses.

    ustoo.org/Support-Group-Nea...

    Charles

  • I'd like to thank you for joining the clinical trial. Whether or not the trial helps you, it will certainly help others. If any of the trial participants do well the NCI scientists will try to figure out what distinguishes them so that doctors will know in the future who can benefit from this. Even if everything fails, that too is important knowledge.

    I suggest that you ask if the docs have opinions on the source of your side effects. Are they all coming from the enzalutamide? What about the benefits? Are they also all coming from the enzalutamide?

    I understand how difficult it is to live under the circumstances you're facing. I suggest that you try to analyze what activities work for you and see of you can maximize them. I find, for example that my spirits rise when I spend time with other people and fall when I'm alone with pain and exhaustion. You may also be able to plan to sleep some hours that you are normally up but try to enjoy and better utilize the times when you've decided to stay awake.

    I also think that, maybe, you can come up with a list of things that are important to you. For example, before I die, I would like to write down things about my childhood, my parents, and other family matters that my children and grandchildren know nothing about and won't have any way to learn about once I'm gone. I might make some sound or video recordings for my grandchildren who are only 8 and 4 years old now and won't remember much about me. I know that when I'm gone I'm gone, but I like to think that something of me might remain.

    Good luck to you.

    Alan

  • Hi Joel, I was diagnosed 1 year ago at age 49 with Gleason10 PCa. I get where you're coming from. It's hard to keep the dark thoughts out at times and the uncertainty is hard to bear. For me, I try to focus more on living than dying, but it can be a struggle and scary. I try to get the best medical advice I can, but I am also open minded to an integrative approach, with dietary and lifestyle changes and supplements, where they make sense. I wish you well in your battle and I hope you can start thinking about the future. I always try to drive out negative thinking as I truly believe that you become what you think. Cheers Paul.

  • Joel

    Sorry to hear ur going thru hell. And at a young age. I'm g9 with SVI also. Dx at age 69 now 73. I've had RP, SRT, RT to lymph nodes, and I'm now back on ADT3 for the 3rd time because an axumin scan found a lesion in femur which I'm having zapped with SBRT.

    I think about and research PCa daily including reading posts of guys with this shit disease. It helps to talk about it and help others.

    My life hasn't changed much. I traveled extensively when I was young so it's not on my bucket list. Seeing my two boys and four grandchildren is top priority and they're on East and west coasts. So not easy to see frequently. Air travel sucks these days. Not like the old days!

    Right now my biggest fear is that at some point I won't be able to play golf! Sounds selfish but it's my passion. Keeps me feeling young. As does playing with the grandkids ages 3-10😅.

    I don't know how I'll react when I feel too poorly to do anything. But I once suffered from severe depression which was pure hell on earth. Much worse than PCa!! I found that cymbalta ( duloxetine) saved my life. I still take it for pain and anxiety. I highly recommend it to you. I also take other meds which supposedly help fight PCa, including Crestor, metformin, and Celebrex . For ADT SEs I take estradiol patches ( for hot flashes), vitamin D3 and calcium for bone strength and cabergoline ( for breast enlargement). Finally , exercise is vital for fatigue and muscle/bone strength.

    Please try to hang in there!!

    Bob

  • Joel. I understand how you feel. I was diagnosed at 55...its been 3 years now as of this month. I feel the same. Good days and bad...so hard sometimes to get past the effects the treatments have on our ability to think clearly...to be sexual...to just enjoy the day. I had to find something to keep me in the moment...to get through the day to day. Exercise helps. There's a goal...there are positive results and it gives me something to look forward to everyday. I'm sorry if this sounds preachy...but I really do understand the despair...depression and the anger. We all know where this trip is headed...but there is the possibility that before we get there...one of these immuno-therapies may actual halt the cancer' s progression indefinitely. And that with a course of chemo may leave us in an indefinite remission. So...I continue...live in the moment (because that's all we really have) and hope...even when it all seems useless and pointless. I truly do respect how you are feeling right now. I won t tell you not to give up...I've considered it as well...but coming here and texting about it with other guys who are living the same nightmare...helps a great deal. Not feeling so alone in this definitely makes a difference.

    Bill

  • I suggest you continue to treat aggressively considering your G10 and that it has already spread.

    May I ask what the 2 immunotherapies are being used in your clinical study?

    Do you know what the different clinical arms are of the study and are you aware which arm you are in or is it a double blind study?

    Much luck to you

  • there is no blind part of the study. it consists of enzalutamide and provast. the first provast was smallpox based and the follow ups are avian flu based. I'm not gonna quit, I just feel like it a lot of days. oh, not everyone in the study gets the provast. some only get the Enzo I get both. I think the study is still open to new participants.

  • Joelhirsch

    Keep trying!!!

    So someone once told me "hey smile, things could be worse", so sure enough I smiled and things got worse.

    I try with HUMOR....

    Good Luck and Good Health!

    j-o-h-n Thursday 05/25/2017 1:43 PM

  • Joel and friends,

    My return to ADT (Lupron) after a long sweet medication vacation (PSA doubled) reminds me how fortunate I am to be able to remember life without the side affects. Knowing I was returning to ADT in February I read aloud with my spouse Androgen Deprivation Therapy: an essential guide for prostate cancer patients and their loved ones, 2013, by three PhD's Wassersug, Walker and Robinson. Yes I had been through most of the side affects first hand, but some of the coping skills are worth the price of the book. I highly recommend this book for any one on ADT because it is interactive and by its nature introspective.

    Best of good health by all you believe holy,

    PeteG

  • An excellent book for any person who has been diagnosed with any serious cancer is

    At the Will of the Body : Reflections on Illness [Arthur W. Frank]

    Highly recommended. Available from many media sources, and libraries.

    Charles

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