I'm tired of the hormone therapy which doesn't seem to work for me.
I'm tired of the exhaustion and then having someone tell me to exercise more.
I'm tired of stress incontinence.
I'm tired of nausea and feeling like nothing matters.
Im tired of not knowing where I'm going, but know where I'm going to end up.
And I'm tired of the medical industry having no sense of urgency.
I'm sure there's more, but I'm already tired of talking about it.
That's it.
If you haven't yet maybe it is time to see a Psychiatrist. Helped immensely, not the talking, the meds. I am a new man with a new attitude and sense of purpose. Good luck to you
What meds, If I don't mind?
Cymbalta, it improved my outlook and keeps me from wanting to fight everyone
Yes!
Not yet, I was ready too, but my PSA jumped from 24 to 92 in 5 weeks. Now they want more imaging, of which the insurance will most likely deny.
Ask anyone that knows me, I am that crazy SOB that does unpredictable things everywhere I go. I have that positive nothing to lose thing going on
My radical prostatechtomy was 2-1/2 years ago. I've been on hormone therapy since about 4 months after the surgery.
I thought about it, but part of me says I have enough crap in my body
for what it’s worth, I felt the same. I resisted psych meds thinking I could manage it myself or tell myself it wasn’t as bad as I’m making it out to be, but in the end I conceded. I’m glad I did, zoloft helped a lot for me. This is not a fair fight we are facing, we can use every weapon in the box. Your not alone, hang in there.
Just being able to talk to a professional helped me a lot. I didn't take any meds, but having some therapy is very helpful. This is a really tough thing to go through so don't feel bad about asking for help.
in the body means also in the mind. Very difficult.
In the meantime, since you are mCRPC now I’d insist on Provenge treatments to accompany the Xofigo. The only immune treatment for APC that actually works, and it’s synergistic with Xofigo. It is one more thing” however.
Sorry you're feeling down...and tired. My view for you and my husband, is how could you or anyone else with PC not feel that way? I think your response is totally normal and expected. You've been told you have a terminal illness but no one knows what that means in days, weeks, months and/or years. You've been told some treatments work, some don't and they all only work for an unspecified amount of time....then there's always something else to try. You've been told they all have possible side effects and you know that's true. You've been told to have constant bloodwork, scans and doctor appointments. What's not to like...right? My husband would also add that he's tired of doctors, being treated like a pincushion, of not getting a good night's sleep, of gaining weight, of suffering from loss of muscle mass and strength....of pretty much having your whole life turned upside down! My advice is what I tell him...take each day as it comes and try to find just one thing to feel positive about, don't shut yourself out but try to engage with others--spouse, sibling, child, parent, friend--don't wait for them to call/visit, just pick up the phone once in a while. Indulge yourself....a favorite food, an old/new movie--particularly one that makes you laugh because laughter is, as they say, the best medicine and helps release endorphins. On a scale of 1-10 I'm usually an 11 in being positive...but helping my husband get through this horrible disease even on occasion gets me down, so I know it's not easy. Just keep putting one foot in front of the other and keep breathing. I can't promise it will get better but to me every day above ground is a good one! Hope you feel better!
Xlnt advice. I'll try that tomorrow.
Such good advice and I needed to hear it, probably everyday. I do everything and feel overwhelmed most days. Being the decision maker is the hardest. I'm the wife and struggling how to help him. Would love to stay in touch since your so upbeat and positive.
We all get overwhelmed occasionally...especially lying in bed in the dark for me. I sometimes wake up and make sure he's breathing. PC makes your whole life feel more fragile. I thank God every night for another day he's given me with him! Xtandi has stopped working and we'll find out next visit with MO what she wants to try next since his PSA has started to slowly rise....doubling but numbers are still very small. There will be tough choices then since he's one to suffer side effects and also has a complicated cardiac history. One day at a time...
What a wonderful and helpful reply to this man. I cannot compare my situation with his, but my wife says exactly the same things to me as you have written. Thank you for reinforcing her message.
I pretty much stay overwhelmed. This site helps but don't have time to follow it much. My hubby also has memory loss problems so as well as aPC so everything is up to me. Now a new finding in his pelvis which should have been caught in Feb. His Onc has been gone too much this yr. So now questioning her wanting to biopsy and a RO to do 3D Phroton vs Proton? I worked in healthcare so hard to trust.
My wife just tolerates my shenanagins and my female friends, gives her a break from me and we are like a giant family unit. The extra support is great for her. She isn't in this alone
I hear you brother.
instead of thinking about all the things you're tired of, think about your beautiful little family that supports you. I read the posts here every night and think about how lucky I am to still be around after being diagnosed with stage4 pca, and not suffering from all the meds side effects or not being in hospice, etc. You still have insurance. Some of us are striving paying for treatment and meds out of our own pockets. Be thankful you're not drowning in Puerto Rico or fighting a Russian invasion, etc. Hang in there, brother. Keep fighting.
Thanks for your perspective.
Well stated!
I always used to think, well at least I'm not in Afghanistan.
Yes. I totally get it. I believe for me the importance of my living is what keeps me going. Is there something I enjoy or want to do?
I also have the same issues with the seemingly contradictory events of fatigue and exercise. However, when I have made the effort on a low-level, it has helped me feel less tired. A much higher level of exercise with cardio and weights is recommended. I cannot do that much but I do what I can and I don't worry about it.
More important to me is enjoying life and trying to keep myself as healthy as I can within my own parameters. Much of what helps me now is not focusing on the future, just on the now because it takes away the "not knowing" anxiety. No one knows what awaits them. The difference between healthy people and us is that they are not thinking about it.
I hope you are able to find ways to have fun and ignore some of the absurdities of your circumstances, while continuing treatments that are helpful.
Good luck.
I didn't mention I suffer from chronic back pain and now have mets in some of the same locations that I have been told I have osteoarthritus. So the back pain is a double whammy for making it difficult to exercise, I've found no one who can relieve me of that pain. It ads to the frustration.
That really sounds terrible. One of the most basic approaches in pain management is getting ahead of it, so it can be managed. Have you been to a cancer pain clinic? They may have a better knowledge of what could work. Are any of the mets treatable with SBRT? I had that done one one bone lesion and it immediately relieved the pain.
For me, the pain precludes every other activity when it's really bad. It's hard to think, much less to do a healing meditation, exercise or just relax. Have you tried cannabis in any form? It also might be helpful. Once you get to the really
I hope you can find someone and something to give you some relief.
Have you looked into Lu177. I’m starting that this week on a clinical trial to zap the spine Mets I have at C3 in the neck and T8 to T12 on the mid back. I have heard that this treatment can nearly Immediately after the first infusion reduce back pain in some patients.
I haven't had chemo yet, my understanding is that insurance won't cover LU177 unless chemo has failed.
Yrs . The approval is based on VISION trial and chemo is a requisite. But there are clinical trials for the chemo naive. I’m starting one this week. I am chemo naive … and hope to stay that way… but I do realize some people are bengitting from chemo and extending life. But Lu177 is more targeted, selective and side effects typically way less.
the Feldenkrais method: get into a position where you don't feel the pain, stay that way as long as you can, keep doing that as often as possible. The theory is you're "programming" your body to be pain-free. It was the only tx my g/f found that worked, after 20+ yrs of chronic neck pain. Good luck, and stay in the fray, brother.
When I feel like that I try to get out with my friends or family for a beer/ margarita/ bottle of wine.
For example tomorrow the England soccer team are playing Germany ( I was made in England and living in Canada).I am heading to the pub to watch England play Germany with my 29 year old son. Preparation game for the soccer World Cup this year. It’s very important to me to have QOL and even though I’m rehabbing from back surgeries and hobbling: and using a walker , my goal is to ENJOY life as much as I can by doing FUN things even with limited mobility.
My passion for fun is my motorcycle, but I find it a bit more difficult to feel safe on it these days because of weakness.
I’m getting an e~tricycle this week. Stable and 4 inch tires do I can go off road. Baskets in front and back to put my beer!
In your case maybe you can trade in your current Motorbike for a 3 wheeler motorbike. There are a few available.
I still ride my bike bikes but go on short trips only and less speed.. as long as you are careful , you willbe fine. I use a BMW 1200 and a Super Tenere’ 700. I stopped the dirt bikes which cause too much jarring. I have mets in my Iliac and some bone lesions
I've got a full sized Victory Cross Country Tour, over 1700cc with lots of storage. Hope to take an over night trip this weekend, but the way I was today, its not looking doable.
Crickey mate. Watching England at the moment is not the greatest thing lol.
I totally get though that its time with your son and just getting out and about. Totally endorse this. I'm feeling tired most mornings but am ok once I get going. Let's hope for a win tonight.
I live in Canada and PSA regular testing not advised/ tested for.
Just wait till it spreads and causes pain and then deal with it!! I find that such Bull S@”t and means some people won’t be caught until the cancer has escaped the prostate to the bones. If only one patient was caught early and had ability for cutting it out the prostate, that person could be cancer free and testosterone at normal levels. So I tell all my friends 50 and above to get a DRE and PSA test each year. The PSA test can be paid out of pocket for like $20 to $30 dollars. Looks like you are doing great PSA wise. Just do MRI and CT scans say at least once a year to check those Mets are not eroding bone/ pushing on spine. The CT will show bone erosion? The MRI will show spinal compression.
Thanks. It is the same in the UK. No checks as standard. I even had a 'Well man' check at 50. What they didn't tell me was that PSA was not included. Crazy.
Professor Whitty is the Chief Medical Officer in the UK. I have watched a YouTube video of him discussing prostate cancer with some Cambridge university students. It is a long lecture but he basically mentions those that are diagnosed with stage 4 and already spread in passing. Were just collateral for not doing tests.
I will look into the MRI. My nurse told me that there was 'no value' in me having and MRI when I was first diagnosed.
Anyway rant over. Going to watch the game myself. Take care my friend.
Know the feeling! Hang in you'll make it.
agree
What kind of "hormone" therapy are you on? If you are getting Lupron injections I can understand why you feel like sh*t! My tE2 gel has no effect on how I feel and is doing a great job of keeping my PSA undetectable. My incontinence is my major concern now. I may go back to America this spring to have the AUS implanted if I can find a reasonable Medicare supplemental policy. Most of my friends are paying 'well' over $250/month for a policy which allows them to go to a hospital of their choosing. Since I live in Thailand and Medicare pays for nothing here, I seldom am able to take advantage of any US medical visits/procedures or meds.
I am in the process of sending some E2 gel to my daughter in Illinois for those of you that would like to try it.
Sending hope to you from the other side of the planet,
Ron
Morning Ron, When I'm done with this trial study, E2 sounds very interesting. Been on Lupron for 3 years, too long.
have you talked to the surgeon to see what he would charge if you paid cash for your 20%? Or, figure the cost if you buy a supplement this Open Enrollment…starting soon!! It looks like only a six month pre existing waiting period. Then cancel later. Perhaps see also which supplements the surgeon accepts so you don’t buy a plan he won’t take
I've been on Lupron since August 2020. On Erleada for 18 months, Xofigo for only 3 months, and Zytiga for the past three months.
Never heard of this gel you mentioned.
I buy it here in Thailand. It is called Oestrogel and is made in France. I don't believe it is available in America. Someone on the forum posted a photo of a similar product in a can with a pump on the top; however, I think he said that it was about $170 in The US which is a total scam. The ones that I buy here are tubes like toothpaste and I can sell them for about $30/tube even after I pay international shipping charges.
I hear you! I'm still working and am having a hard time with the exhaustion. I was prescribed Ritalin and it makes a noticeable difference. I'm still tired at the end of my work day, but it gets me through well enough to be functional. Small victories!
ironically for me, the only thing I seem to care about is playing pickle ball, a game I started in April!
lol clever… fungi!
yikes! Single play! I think I would go into cardiac arrest at 74!
Medical & Pharmaceutical industries are the most corrupt industries. They are not interested with the people's wellbeing, but profit, profit.. By removing symptoms, no one can get better. Symptoms are the body's messengers, trying to convey messages. Drugs are synthetic compounds, chemicals, they make you worse.
"The mind that creates illness, is the same mind that creates wellness". Dr Joe Dispenza
Get a copy of Dr Dispenza's book, "You Are The Placebo" and start reading.
Listen to him on YouTube. Practice his Guided Meditations. Make an intention to get healed.
Listen to Bruce Lipton, Louise Hay, etc.
Change your diet, life style, mind sets.
Do Ketogenic diet, do regular 24 hrs fasting with water or homemade vegetable juice, later try prolong fasting with water...
Trust your self, not the doctors. If you take the right steps, your body's intelligence is capable to heal you.
Further References - for your information:
1) The Metabolic Approach to Cancer - Dr Nasha Winters,
2) Radical Remission - Kelly Turner, Ph D,
3) Never Fear Cancer Again - Raymond Francis, etc.
6 years of stage 4. Know exactly what you mean Warrior, but the alternative really sucks. Keep the faith 🙏🙏🙏🙏
NEVER GIVE UP!!
As like all of us good days and bad. I try to stay active and positive. I buy what I want enjoy what I like and dont think twice about it. I love playing my guitars so I bought ten of them, a friend of mine bought an RV campers we went to visit I liked it so much I bought one the next day. Lifes definitely too short especially in our cases so enjoying it is the key. Having my Wife and families support is definitely the icing on the cake. Please seek help from a qualified care giver . Never give up Never surrender. Leo
you are depressed--both physiologically and emotionally. Are you in a support group? Are you seeking mental health services? You can feel better.
I'm more pissed off than depressed. There are a lot of other things in life right that are not going well either.
dadzone43, I think your recommendation of support groups mental health services is great and underrated . I think it's good advice for anyone suffering anxiety from this disease at any stage if they need it. The mental part of dealing with this is too often overlooked IMO.
That would be me
Good to get that off your chest. Everyone of us have thought suicide at one point. Including myself and I’m glad I didn’t permanently check out. It got better and that gave me hope.
Today is a new day and suicide is the farthest thing from my mind.
Explain the frustration to your doctor. There is help at many different levels. 🙏s your way.
I've never considered suicide.
Great! Happy to hear your illness hasn’t drove you to the deepest darkest spot of your life. Over 50 per day commit suicide everyday. Half of those are some of the bravest men I met in my life. Our US military. Keep smiling 👍
Hang in there.
I am going through the same feelings.
Now I am on chemo.
At least we are still alive and keep our spirits up
Well said for how you are feeling just as well said on all those replies you got. I never thought I would say this myself but its day by day, week by week, month by month and then its already been a year. Diagnosed 2019 day after my birthday, day before Christmas ., 67 now and have Stage T3B, gleason 5+4, RP, adt,prednisone, 34 blasts of radation,, 5 more on a met for my right helium. Keep going though, got lots of support, loving family as I'm sure have also. You just keep it going brothet, be strong, we all have been there.
Even more, my local primary care never checked my PSA for 4 years, then bam, Gleason 9, Grade 5.
Same here. My ex-GP faded the idea.
Hey brother, I have days like this too with stage four in my pelvis and spine. My daughter is getting married in March so I focus on that. Started walking at sunrise each day. Now I walk up to four miles up hills down hills in beautiful soother Utah. The view is Gods land of wilderness and mountains. I was listening music now I listen to books and podcasts. Yesterday I could hardly walk. Tired, feet aching, then it effected me mentally. I sat and felt terrible almost like a covid or something. I fast 18 hours, meaning I eat my first meal at 1pm. I had cottage cheese last night at 5pm and was asleep by 8pm. Slept until almost 8 today. It is a new day and I feel much better. Remember to rest, sleep well (I use pm's and sometimes a soma.). Each day is different, this too shall past. Feel God's hand on your shoulder and keep the faith, People who love you require you to carry on. And smile for them.... James C.
Could you elaborate on which ADT side effects are moderated by lexapro/etc? Which anti-depressants have this benefit? Thanks!
Keep the faith, brother. Yeah, now we’ve got PC, and that could limit our time — but this is no different than it always was. PC is just something specific that *might* be the limiter. We can still enjoy the passage of time, as we move towards the same place we were always going to go anyway, PC or not.
I don’t mean to discount the side effects — but for me, this forum has offered many strategies to cope.
ME TOO!!! I feel like crap is my mantra. Here's what I do. Realizing my brain and its hormones levels and nuerotransmitters and god knows what else in toasted I just keep pushing forward. My mom lived to 99 and had cancer three times. I'm only on my second cancer. You need to use what you have to kick the rest of your ass in gear. Your thoughts and subsequent actions can alter your brain chemistry in a positive way. It is a fight and fight you must. There is the power in each of us that can force us into a better physical state and mental state. Thinking positively and laughter. Laugh about stuff it releases dopamine. Cancer can rob you of everything except how you choose to fight it and how hard you try. Keep trying and fighting!!!
I hear you brother - I'm tired of waking up tired, tired of remembering how good i used to have it - even if I didn't realize it then. Tired of wondering how much higher my PSA will be on the next visit , tired of buying the gas to drive the hour to see the doc, tired of paying the parking garage fee, tired of my job that i have to keep in order to afford my dues in this club. Tired of crying like a little boy with a broken toy. and my wife is tired of not being chased around the house any more, and of hearing me tell her i'm sorry i got sick. Tired of reminding myself (many times a day)that I'm not going to ever say' It's not fair' because nobody ever told me it would be.
my MO put me on 50 mg/day Zoloft about 4 months after that first ADT shot, and then 100, and then 150 mg. i finally found an NP who specializes in psychoactive drugs and she added Bupropion to the mix - and we started cutting down the Zoloft, now back down to 50mg/day. the Bupropion did a world of good - much more than the increased Zoloft did - but it really didn't fix anything. just pushed all the highs down into the low spots i think- squeezing me into a much narrower range of emotions. i never would have guessed that when the Testosterone drained out of my head that it would take all the happy with it. I've talked to a psychosocial oncologist every month now for the last 20 of my 24 months of knowing i have PCa; she has helped, but she hasn't convinced me to like the person I am now. i have to give her credit though, she hasn't given up yet. If you remember how to laugh, do it, every day, before you forget how.
Go Birds… I am so thankful for football season!
Hello bglendi53 … you’re singing to the choir here . I’m sick and tired , of being sick and tired! Be happy that you didn’t get this at age 53 , like I did . APC is hiding now inside of me . But when active is a bitch from a-z .. we are depleted in most ways .. Cling on to what and who you love in life .. Most guys on adt go through it all brother . Hang in there . We onl6 have one lifes hear on Earth .. my mind and body are shot , yet 8m thankful I’m still here when most said I would be …. I know what you mean about guys telling other guys here” work out more” ! I am thinking only a small percentage of us actually work out hard . With no t no muscles no driving force to hit the gym . I do it in monotony , mostly cardio with very light weight high reps .. I prefer hiking and being outside .. Hang in there Sir! I can relate ,so can most of us . Never go to the dark thinking side . Been there , done that , a complete waste of what limited energy I have left . Keep swinging at it! 😎✌️
Thanks Lulu, I'm never too dark, but when I look at what happened to me just after retiring, it has seemed to destroy most of the things I was looking forward to do. First the diagnosis, then Covid for 2 years, now I'm not physically even close to what I was when this started. And you're right, at least I was 67 when first diagnosed.
I think brother Hugh from Ireland summed it up best at least it was a light bulb moment for me in how it described why I was so bummed and disturbed "it took away the life we thought we were going to have".
My laugh of the day.
I just started playing dodge ball. With cantaloupes. The cats are really pissed.
He would have given you a 10 on the laugh meter. Very rare.
LOL. Wiping the tears out of my eyes.
I have been feeling the same lately but then I start thinking how lucky I am that the treatment is working and the only negative is the treatment side effects😀
I/ve been on and off Lupron for ten years. I have to say that what really made a big difference in my attitude was when I discovered the simple fact that heat can kill cancer cells. I began putting heat pads and hot showers and hot weights on my sore spots and they went away. I now realize that the heat treatments have saved me from metastasis so well that I don't worry much about it anymore. Maybe it would help you.
Interesting, but I already have mets in 10 location so it may be too late for me.
Maybe. Maybe not. I've eliminated more than that over time, (at least two dozen over ten years). Larger tumors take repeated applications but they are reduced with each treatment.
I feel the same way and think maybe chemical castration isnt for everyone. I plan on taking a break from it....why should I be so fearful to try. PSA numbers....pffft, I'm over it.
Tired of Being Tired
Tired, sick-feeling, slightly unsteady?
Just Diagnosed. Suggestions Please
just diagnosed; worried and unsure
