I have been on this site for a few months. I have been on another site for a long time.
I have been fighting this disease for 13.5 years since I was first diagnosed Stage IV age 45.
We are ALL different, everyone handles this disease in his own way. When my PSA has been > 40, it is hard to wrap my mind around someone freaking out when his PSA rises .03 points.
We are here to assist each other.
YOUR fear can feed on others'.
Leave your freaking out at the door.
We are ALL experiencing this disease in our own way.
We are NOT doctors, we cannot tell you or your father or your husband what to do.
I view this site as a Forum in which to share information - nothing more.
If you need medical advice ask a DOCTOR; that is what he/she is for. If you feel you cannot ask your DOCTOR, find another one.
I truly cannot understand how some gentlemen on here apparently eat, breath and sleep PCa. After more than 13 years, I would go freaking crazy.
Let's just be respectful of one another and realize that YOUR words may affect others.
Be respectful, be understanding.
I will now hop off my soap box.
Be healthy and be respectful.
Written by
MJCA
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You don't need to go overboard, amigo. Just click on that 3x3 circle grid next to the house and click on the gay men with Pca community. They ain't gonna kick you out.
This group has 10X the number of members. A LOT more experience and information from the guys on here. I posted because we all have to put things in perspective.
excellent post --- I have a question about your treatment. did you do watchful waiting for a time --did you do radiation to lymph nodes or are you on ADT and when.
believe me...its freaky to read about what others have overcome.....i'm totally in awe of the composure of all....this is a good site.....papillomas and all.
Yah Jbooml, there are some real bad ass MF ‘s in these pages. I’m not one of them . Some guys have hung out with APC for decades. That’s a bad ass in m book .
You are right. I have my freak out moments as well. I just don't share on social media. And I am 59, gay, I have been single for way too long. I am an only child and all my first cousins are in Philadelphia or Montréal. I live with a couple. So I DO know loneliness. I would rather support others than freak out.
I was single until just 6 yrs ago when I met my now wife. She saved my life .I know that single life ...all too well. Ups and downs and in betweens. My dad was a solo man in the wilderness type guy. The further out in nature away from man , the better for him. I m kinda like him .. nature is healing to me.. city life , I’ve lived for a few short years.. After that I’m now living off the beaten track. I saw a lot of the “ high life style “ in some great cities.. the food I still dream about ,art, live music , I miss those... I see the snow hitting the east coast and I say “ 80 degrees in a few days , nice, I’m happy .... I can nude sun bathe any day I choose. Love that freedom .... Take care brother ... we are all in the same ship, trying to stay off of the rocks.. I call it the S.S. Minnow or the APC Fitzgerald ... we tread til we can’t tread no more ... as long as the sun rises each morn there can be new hope. If the sun don’t rise we all will frozen together.. not a bad way to go..
Humor comes from pain , not joy. Don’t know if you ever saw the cinema classic “ Dr. Strangelove”? Or not, but The scene were Slim Pickins goes down to the bomb doors to un jam them and the only way is to sit on top of the bomb and ride it to the ground.. He jumped on with his bent cowboy hat on his head one hand raised in the air like a bronc rider in defiance and , Boombs away , yaaaahhhoooo, yippie Calle MF’s ......all the way down... we men think that we’re captains of our own ships , the captain always goes down with the ship, right? I tell myself , yah that’s how I’ll go out , brave. I plan to poke APC in the eye and go down kicking ... Mercy will come to us all when needed.. Live comedy in NYC must be great. I m a fan of comedy clubs ... there is plenty of crying with APC . I’m laughing at self all the way brother. Comedy and tragedy walk hand in hand .
Im not so sure that the PSA number really means all that much. I have heard of many guys with a number in the 100s or even 1000s that are doing just fine, and I have heard of others with relatively low PSA numbers that have died. I think its only real use is..... number going up = bad........ number going down = good
That isn't the genre I find repelling. I've heard my wife tell a relative that I got "kinda fidgety" when my Gleason came back 9. But...when Dr. G___er came in the room to tell he couldn't radiate other than palliative because of distant Mets (dead man walkin', cat's outta the bag, blah) I was drowsin' on this huge, old & worn-comfortable red leather recliner when his nurse started tapping my boots. "Charlie," ( he'd known my brother, a radiologist who'd recently passed from melanoma) "I'm not going to be able to help right now, because it has spread outside the capsule." I said, " I know that's important, Doc, but hold that thought... " He looked at me funny. "How much will y'all take for this recliner." Lol, he was like, " bdehbdehbde, hunnnnh?! " lol
Kick or you will be kicked . Eventually we all will kick the bucket.. . Then comes APC for the next guy. Wish it upon no man or their poor spouses or partners. I feel worse for my wife Than for myself. I probably deserved this . I was a wild child ..now I’m the tortuga...
Do you ever share that with her??.... if not, perhaps you should.... if my wife could take it, I would share more.... I think that is wrong of me sometimes... it's just so hard on us and our loved ones... Sometimes, it pays to let the ones we love know how we really feel about having APC... IMHO...
That’s crazy . Sorry to hear that . I’m laying in the bushes for as long as I can . Keeping my head down and hopefully away from the reapers swoop. Hope that sucker will forget my name . Call me nobody.
I respect what you are saying but land on the other side of the fence on this one.
For some (maybe most) of us this is our only outlet for our fears and feelings. Having said that we should not discourage anyone from asking any question that is on their mind. We have some excellent patient advocates here to address medical questions citing clinical trials, personal experience, journal articles, etc. This helps to educate and lessen anxiety and fear for the poster as well as the others reading.
My anxiety level is way down since joining this forum due to the education I have received. I formulate my question list for my doctor visits from the dialogue here. I wouldn't change anything we do here other than the heat in the discussions that occur infrequently.
As incongruous as it may seem, I agree with the content of your post and applaud the tone. Nobody should be afraid to ask a question, and the info/Intel IS here.
Well I understand what your saying but the advice (including medical and lifestyle). I have received on the site has been invaluable over the years and I’ve been very glad of it. I would say the guys on here who study Mpca and share their knowledge are worth their weight in gold. They have certainly helped me form my lifestyle over the last five years.
For instance MJCA you have survived for 13 years I would certainly be interested in your treatment, progression and lifestyle history just to see if there is anything that might be of use to me.
Diagnosed stage4 in Nov, this site has been great for me.
When you first get the news you don't even know what questions to ask the Doctor (all you're thinking is how long have I left to live).
Sharing daily problems like night sweats and what foods to eat are just questions we can help each other with, I leave the really important questions for the Doc and don't bother him with my wet dreams lol
I ve never had one.. found my dad’s Playboy subscription at 14 and it was on . Never had the blue balls either. After 40 years of work my Johnson got a rest.. Ahh “ The golden Years” Was that Broadway in the back? Looks fun . TGIF
These docs have heard it all many times before . The side effects so common for most. To them it’s old hat . To us it’s our life and QOL on the line. Keep asking! We are all pulling for one another. Take it easy Zetabow...
Thanks Lulu700. Full effects of Weds Chemo hit me yesterday, zero sleep and LOT of pain last night, just got to keep pushing forward. It's these low times we need each others support.
At our lowest points we learn the most. That anytime not in treatment is a gift.. You’ll get thru this . Then time and recovery. A test on our very being ........ Rest eat hydrate repeat daily .. God Bless
After primary treatment for PCa failed and I had two mets, the most important question that I asked upon receiving my first injection of Luoron and the standard talk that this was the standard of care, I looked the RO in the face and stated well all and good, but my question to you is simply, “If you were in my shoes, newly diagnosed with Stage 4, what would you do?” His answer led to me to the path of treatment which has been very favorable for me.
GD
Thanks for your perspective. This sure overall has helped me a ton with answers to questions and questions to ask my oncologist. I am not a fan of the fighting that has been going on and it seems to have died down. I do find some humor in that my sex preference after being on Lupron for years is none. There should be a new category for men with apc. 😂😂
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Going from thinking of sex 10 times a day for 40 years to not even once a week during my awake hours.. I am a None also. The thought just doesn’t enter my mind after 4yrs without “T”.. se la ve...
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Swollen legs on Zytiga and Prednisone
Taking zytiga
Update May 15, 2024
Muscle pain
MRI found 2 cm lesion on pelvis, doctor said to ignore it.
