The PSA was rising on me, Urologist did the genetic test, "LI-Fraumeni syndrome" is the curse.Aged 44 years and had radical Prostectomy on birthday. PSA went zero for a bit, then started rising. PET scan shows meta in rt pelvis, 2 lymph and a lesion. Oncology start the Lupron and Xtandia bullshit. Feel like shit, and the weight is dropping. Angry .
F*ck Cancer: The PSA was rising on me... - Advanced Prostate...
I believe feeling ANGRY is an appropriate response.
I would advise that you just don't live in anger all the time. It can consume you and keep you from taking action!
I have a T-shirt that reads - "F*ck Cancer", only my T has no asterisk
Great good luck
I hear your angst brother. I’m a Lupron Xtandi “ zombie “ ….. I know what you are feeling. Anger certainly is understandable. One tiny up note tho … you’re weight is dropping. I nearly instantly ( after starting Lupron Xtandi ) put on about 60 pounds of hard fat that doesn’t come off easily. You being one of the guys that doesn’t put on the weight is a plus.
As others here will tell you, ….now is a good time to start hitting some type of exercise regimen ..this to keep up those muscles that Xtandi and loss of T cause to diminish. For the anguish part, Xanax helps a lot ( its what I use ) and many guys on here use a psyc drug that does them wonders and they feel much better ,mentally , all the time. I don’t remember the names but I’m sure others might chime in and let you know. There are a dozen new recent psyc drugs that work extremely well.
Hang in there … the big picture is what matters the most. More time with family and loved ones … a little longer life is a BIG bonus … just IMHO.
Thank you very much for the time and words. It’s very appreciated. Much respect
I go on long walks/ more like fast march, ear buds playing a fast beat. Sometimes I think I must be part African American ( a lot of fast James Brown). If I couldn't get in my walk I could get depressed.
there isn’t anything good about having stage 4 cancer , …that people with aPCa ( or their loved ones ) would experience depression , some times ( a lot ? ) is perfectly expected. I’m pretty sure just about everyone on this group is intimately familiar with depression. All of us probably have different ways of dealing with it ….. but managing our depression is key to trying to have our best QOL in our remaining time …. that plus being considerate of our loved ones and dragging them down as little as possible. I like everything from deep house , reggae chill, hippie rock to the rock classics. I like James brown too, heck I was there when he performed a couple times. I used to see Stevie Ray well before he was a household name. He was a warm up band with an unusual music style that took a bit for Texans to warm up to.
I don’t walk much these days due to adt SEs but often , when I’m on my etrike doing the local hike and bike trails, I listen to my earbuds too. Like you … music helps me as well .
Thanks for your nice comment
Why spend your time you have being like that?
If had a time machine, and went to visit you on your deathbed and I asked should you have not wasted your time being angry, I’d bet you’d say yes. I bet you’d ask me to go back and tell you not to do that. Well, here I am, telling you not to do that.
Maybe, I actually have a time machine! Who knows…
… by the way, Trump gets re-elected…
Thank you sir. I need to hear that. Honestly, thank you. I know you are correct.
Hey friend. Dx'd at 53 so I kind of understand your mental state...wtf..there goes my retirement plans...after a couple months my attitude changed 180...now I don't put off doing thing's...i do them now...when on ADT, exercise and some semblance of a plant based diet are key.
Best of luck to you.
Howdy, thank you for replying. I appreciate that. Im still learning all the abbreviations of medical terms. Learning fast. The Bucket list became a huge priority this year, trying to finish all projects.
Ask your MO if you can take Abiraterone Acetate (Zytiga) instead of Xtandi. It has a different set of SEs but the brain fog isn't one if them...mostly liver enzymes but not everyone has them. I didn't and the AA worked well for the 2 years I was on it.
I would say Zytiga for me. Enzulutamide didn't do too hot for me.
I've been on Zytiga for three months. My PSA eent from 33 down to 24 the first month, but now its up to 120. Makes no sense at all.
Xtandi can make you a zombie or an invalid... I had to cut my dose to 80 mg to have a life...... Still here half way through year 6, but about out of treatments... Life Is Good--anger not so much... (we all hate our cancer and the meds that help control it)
That sucks! I've read about some lab experiments to edit tp53 using CRISPR, but that is a long way off. If anyone knows anything about it, it would be Oliver Sartor at Tulane. You might want a second opinion from him.
AsK about erleada......
The genome of the cancer (somatic genome) most probable has the P53 mutation. The cancer could respond to BAT.
Consider to consult with Dr. Denmeade
What a birthday! Boy ,that is a lot of bullshit at you age . I do understand that anger .. I was 53 and I thought I was too young for this party..I was pissed and suicidal until i went into remission …I am sorry that you got clipped so young . Most men get this at over 65 ,not us . I was beyond surgery …. It is quite often that we see this after an RP . Probably you’ll need to hit it with the kitchen sink . F pc indeed . Feed that f more poison. Ask questions here ….please love yourself ,do not go to the dark side of thinking . Lupron and the other will take you testosterone away and hopefully the pc too , but you might need imrt like I did . The fun intensifies with no T .. I hated Lupron so much that I chopped the boys in 2017 . Pc is a long winded sob ,intent on killing us all once it’s stage #4 .. it can hid if you’re lucky . Mine has hidden seven yrs. There is no known cure . You’re young enough to possibly see one coming down the pike . Try to go under the radar and stay in the eye of this storm with me as long as we can ?. Stay strong young man!
OMG. I’m really not alone?!? Been on this site less than 24 hrs, it’s a godsend. Thank you for taking the time to respond. So much darkness, everything you mentioned hits home. Thank you.
Fantastico! We all need someone to lean on . I can relate to you here . My no pc friends don’t really get it . Only us with pc do get it . You’re not along . My theory about getting pc young is that “ it ain’t right” we got hit young . You keep the faith and love around you . Don’t anger at the world or yourself or the ones close by ..Stay Crispy ! youngster . There isn’t anything that we cant discuss . Private chat too . It’s very easy to overload with tmi with this disease ..Ditch anything that causes you stress in life . 🤙🏽😎✌️Take care
stick around Mecrispy and continue to share with us. Sift through suggestions with discrimination. It takes some time to get a reasonable perspective. And still so much uncertainty will remain. Anger is useful at the beginning, but humor and determination for the long haul.some of the best ideas are still outside the box of established SOC but be extra careful there as you learn to navigate weak information, etc.
Better T-shirts in my view: “Hey don’t touch my stuff, I ain’t dead yet.” (Or for me: “ Don’t hit on my wife I ain’t dead yet.” 🤣🤣🤷🏼♂️
If I may say one thing, Fellow Traveler, is that if indeed you did get the short end of the stick, you will perhaps inspire others to count their blessings. I, for one, am grateful, and I very much hope it works out for you.
We are here for you.
You might consider trying transdermal estradiol (tE2) instead of the nasty Lupron injections.
Wishing you the best in this battle,
Here's another... I actually found a company making these as a car window sticker (vinyl) which I have on my car (rear window)! And dont care who may be offended!!!
Yo, Awesome! I need that for all the vehicles. Too Cool Brother. Thanks for sharing man!
I know that anger. Had over 10 years of complete physicals with my doctor and at my place of employment, pages of physical results. I had few if any symptoms. Nobody ever gave me a PSA test. I never heard of a PSA test. Working 50-60 hours a week consumes your life. I was hospitalized 5 years ago with a PSA of 800. I never needed any medications in my life. Was I mad? You know that anger. I wanted to make trouble for the doctor that missed diagnosing the cancer. Even talked to a lawyer. The system has that all wrapped up too. My anger was taking me over. Not good. So I decided to try to enjoy what time I have left. We (my wife and I) harvest firewood for the winter. We enjoy the outdoors and It makes me feel good that I can still do something like that. Yes, life is short. I don't want to waste my time on stupid things like my anger. Someone said "we all have our time". So I plan to enjoy every day that I have left and not waste any of it.
For the first time I feel I am not alone. Doctors, social workers, therapist. All part of the game, the first real people I’ve met are here. I appreciate you taking the time to share.
You certainly are not alone... You're in lock step and arm in arm with fellow warriors, all with our own story, all with our own journey, but together, we are better! Never feel that way, and never feel that you cannot talk about it. While it may be difficult to talk to others who don't have cancer, who are of course sympathetic and compassionate, only we who are walking this path feel its weight. But chose to shed the chains and anchors dragging along with you, drop the weight from your shoulders! Live and dont let this consume you, consume your thoughts and being as there's so much to do, with so little time! If we let it drag us down, we wind up doing so little with as much time as we have. I do understand somewhat your predicament, ie, age, as I'm a rare manifestation of my PCa that disallows my Oncologist to provide useful prognostics either in treatment or survival... But I march on, feel good/great and wont allow the PCa to define me or my actions.
Wishing you the very best!
Keep on Truckin'
My husband passed from PC . Cancer sucks. Not only the patient, but the spouse gets angry also because their life will also change and morph into caretakers. Try all available options for you and ride the successes and don't let the failures do you in. Only God knows the day you will leave this Earth. I will pray for you.
Same damn thing for me, my PC never checked my PSA for 4 years. Never did a DRE either. When she finnaly did the PSA blood test, it came back over. To make things worse my local urologist waited another 4 months before doing a biopsy. BAM, Geason 9 Grade 5.
Man, bastards. I imagine the Drs see so much shit, they become numb to the real world pain. But, when you ask if they would give these meds to there parents, I here Yes. Mine started at the bullshit lockdowns. Then the world went sideways, and stayed. Thank you for sharing sir.
I did some research on the checking of PSA's. What I found out is that around 2010 the big medical was finding out that so much PSA testing was done and resulted in a lot of follow up procedures that was costing the medical insurers a lot of money. The stockholders weren't happy. That explains why I never received a PSA test in 20 years of yearly doctor visits. Also, you can't hold anybody accountable. So I lose. Worked 50 hours a week in the factories and prostate cancer was my retirement gift. And, for whatever reason, I didn't have any warning signs like frequent urination or pain. Also the doctors can't be held responsible. The bottom line is the dollar and profits. Sorry for venting but had to get this off my chest
Being able to vent on here is cool. No one looking down on us, kinda liberating.
Hey Mecrisp, I'm so sorry you have cancer and that you're feeling so angry. I get it. As Andy said below, your anger is justified and normal. The other guys have said some good things below.
For me personally, the only thing that helped my head was exercise. Weights at least 2 times a week. Weights make all the difference. I had joined Planet Fitness in Pennyslvania, US, and seeing other people there working out seems to help me to continue it. Elliptical, bike and rower helps too. But weights seemed to do the best for my head.
If you want to vent more bro, do so here or send me a private message. I'll listen. However, I'll warn you that all my jokes are stupid. And other than work, taking care of my family, and watching TV, I don't have much of a life. Oh wait, I do some volunteer work, helping people find jobs. I help them with resumes, practice interviews, linked in profiles and networking.
Take care bro.
I’m sorry Mecrispy…”lovebird rise and fly your wings are stronger then you know “ ❤️
Justified anger, to be sure! As far as "fuck cancer", I personally associate the word "fuck" with something pleasant so I don't want to dignify cancer by using it in that context, lol. But seriously, don't deny your anger, why try to suppress such a normal reaction. Just don't let it take up all the space inside--leave room for other emotions that can enhance your relationships with others (esp, those who hay help you--sometimes, just because they're the ones who are there, they get the brunt of some of our anger!) and motivate you to learn what you can, exercise, and do whatever things make your life better. And best of luck!
Man, the words! This is now my church. Thank you sir, lots to process. Awesome stuff there. And the SOB took major use of the Fuck stick away, haha. Learning
I am 12 years past my diagnosis at age 53. I have gone through the assembly line of prostatectomy, radiation and medications. Currently on Xtandi. SEs are a minor pain for me, but my wife and I are enjoying life along the way. Yesterday, enjoyed a cigar and whiskey with my brother. Knowing you have this disease is always there, but live life to get it out of your head.
thank you. People on this website I have interacted with are LIVING. This was so badly needed.
It sucks (and not in a good way).
I was 60 when dx so I really cannot imagine what you're going through. Anger, rage, depression, unfairness of "it," why me? despair. Such a whirlwind. Know it well. And, unfortunately, made even worse by some of the meds (Lupron, anyone?)
To the extent that any of us has any control over anything - which is often the source of much of the raw emotion - the guys here are giving support and guidance that are worth considering. The only thing that helped me during the dark Lupron induced despair was exercise and I NO gym man. Get a trainer. It helps.
Good luck to you. Keep us posted.
I understand your anger and depression… I lost 20 lbs after my diagnosis… couldn’t get out of bed depression was so bad…I realized that my thinking was making me sicker… So I decided to embrace my situation and make the best of it… I started eating better started exercising…and started being thankful for being alive…I started to feel better both physically and mentally the mind can play some powerful games… Control your negative thoughts and your life will improve…. Good luck…
yes, the mental health is one of the hardest parts of it. And horrible back pain from the Xtandi. Thank you for your words sir
Keep an eye out for side effects.
Get the xandi istructions and look at side effects, there are other drugs that help, all have different side effects.
Xandi enzalutamide messed with me....phsical side effects were bad enough, but mental lows were crushing and real.....(THAT WAS NOT ME!!!!)
try keep eye out, try keeping a loving eye out for yourself. Hard to explain, but you know you, you know what is really you and look out for the mood swings and lows, sometimes the medications can magnify those lows...
Stay strong, buckle up, WE GOT THIS.
"For the first time I feel I am not alone. Doctors, social workers, therapist. All part of the game, the first real people I’ve met are here. I appreciate you taking the time to share." Like Cooolone said, you are definitely not alone. We are all here for one another, and for you. It is all overwhelming at first DX, but hang in there and know you are not alone.
Lots of wise words here. One more to consider as as we're in similar situations, buy at differentpoints on the path. One of the best things I did was started up with a mental health professional. Your brain's a part of this too!
Yes! Fick it!!!!
Embrace it, fick it! Shout scream! Kick a cat! Punch that nosey neigbour.
Now breath, now get focused.
What you gonna ficking do?????
Mother nature has give us a flick in our prostates! What we gonna do?
MASSIVE RESPECT TO ALL ON HERE FOR SHARING EXPERIENCES, MEDICAL INFO.
If you need talk, please feel free to message direct, please feel free.
Biggest thing for me is ive got mortgage, kids, resposabilities and I need look after myself as best as possible, find a path im ok walking....
You can do this dude.
Diagnosed in December of 1999 with Stage IV Metastatic PC and a PSA of 30. I was 51 and had zero cancer symptoms. I have been on Lupron for 23 years and xtandi for about 9 years. My Oncologist just prescribed a new treatment called Nubeqa that I will start in two weeks. It is supposed to have the same efficacy as Xtandi but without the lousy side effects. If you are not working with a medical oncologist get yourself to the best Cancer center you can find and start over. The only reason am waiting is that i must be fitted for a new Spinal Stimulator to try to bring my pain threshold down from 6 to 8 everyday to a tolerable 2 or 3. Remember you always have a choice about living with cancer or ending your life. That idea always brings me back to living with my side effects and making the best of the times each day when I am in "flow" and forget about the pain. this group is an amazing BAND of BROTHERS. Be sure to attend PCRI conferences. you will meet the most honest and forthright men you have ever encountered. No time for anger...only living.
When I realized that I had received the same punishment as the child molesters (chemical castration) though I had committed no crime, I was so angry that I wanted to kill someone. I was also so griefy that I spent most of my waking hours in tears.
A counselor told me that I should try to limit my rants to 10 minutes per day, and to exert use self-control** and to refuse to let myself "go there" outside that the window.
A combination of that, antidepressants, and time brought me back to my former self.
Best of luck to you.
** She also told me to quit drinking, as that removes one's self-control. I told her that I could no more go through this sober than I could fly to the moon.
Another thought: I live in Santa Barbara, a small city with its own hospital that has a PCa support group, which I joined when I was in the throes of ADT. I was crying so loudly when asked to introduce myself that I was barely able to pronounce my name.
That seems like a million years ago. Don't get too much caught up in what you're feeling NOW, because that is bound to change, and for the better.
I know that's a tall order, but please try to keep it in mind. I adapted, and so will you.
I was diagnosed 4 years ago. I’m still angry. Good luck mon.
This group is not helping to the well-being of the participants.
Please stop listening to, surrendering to the doctors stop taking their drugs, stop allowing them to interfere your bodies. Doctors are slaves, controlled by Big Pharma and its subsidiaries such as FDA, AMA, etc.
All they are interested is profit. They give you scare to surrender to them and then rip you off. Just try to listen to your body, to your Soul/Spirit and let them to guide you. If you do a little research yourself you will learn the Truth about cancer.
There are plenty of very good books and even videos on Youtube.
Cancer is not a disease, it's body's last resort to wake you up from what you have been doing wrong to yourself, to your body.
Change your diet, change your life style, change your mind sets, do intermittent fasting, even prolonged fasting, meditate daily.
Get copies of the following books and start reading.
1) Cancer Is Not A Disease, Dr Andreas Moritz,
2) Radical Remission, Kelly Turner, PhD
3) Never Fear Cancer Again, Raymond Francis,
4) The Metabolic Approach to Cancer, Dr Nasha Winters
(another book with the same title by Prof Thomas Seyfreid),
5) Prostate Health in 90 Days, Larry Clapp, Ph D,
Or, if you don't like reading much, just read the following, as a starter:
6) You Are The Placebo by Dr Joe Dispenza
(Also, watch Dr Joe Dispenza's, Bruce Lipton's Ph D, Dr Eric Berg's videos on the Youtube)
Here are some suggestions for treatment options to discuss with your doctors.
1. Make certain your medical team includes specialists who focus on high risk prostate cancer. That includes a urologist, radiation oncologists, medical oncologist, and an internal medicine doctor to help maintain health while on all the therapies.
2. Consider 'triplet therapy' as recently reported. ajandrology.com/temp/AsianJ... Adding chemotherapy early can improve survival.
Have you had evaluation for neuroendocrine or small cell variant? Those respond to carboplatin and etoposide.
3. Have you had a PSMA PET scan to clearly identify the metastases?
4. Use scholar.google.com to search for metastatic prostate cancer 'metastasis directed therapy'. Highly focused radiation to the metastases (for example with SBRT) can reduce PSA and help hold the cancer at bay. A man in my support group has had more than 10 lesions successfully treated with the latest pencil beam proton therapy. His PSA is very low. He did not accept the definition of oligometastatic disease being 3 or less lesions. Find a radiation oncologist who specializes in treating metastatic prostate cancer with metastasis directed therapy.
5. Find a medical oncologist who specializes in high risk prostate cancer and is familiar with genetic tests to identify if you may benefit from clinical trials.
If what you are doing to treat your prostate cancer is not working, immediately find additional therapies that may regain control.
I agree with you and the rest. Having prostate cancer sucks.
Wow! Thanks a bunch for the info, greatly appreciated. PSMA PET showed 2 lymph and a lesion in the right pelvis area. Been on Lupron for almost 90 days and Xtandi for 35 days. Have not rechecked PSA yet, I believe the end of this month will be that test.
Hey, my man, I was diagnosed at 39 with pT3a n1m0 gleason 9. Had prostatectomy last May and radiation in the fall. I've been on lupron or eligard plus zytiga the whole time. Thankfully PSA is still coming in at zero and I've been very fortunately to not have a ton of side effects from the meds. Turns out I also had a gene mutation (ATM, I think).
Anyway, all things considered I'm doing great. Like you said in a comment earlier, at some point you just need to accept it as much as you can and get out and live your life. PM me if you want to chat with a fellow young-ish guy.