John, just turned 62, Stage 4 aggressive and castrate resistant & still standing! Diagnosed at 57.
I am a few months in to the Concentrated BIRM and I am still feeling amazingly good, I think. Seriously, without any testosterone it would seem like it would be hard to do anything. I stay very busy...walking the dog (almost one mile) twice a day...making breakfast after picking mulberries and bananas from the garden to go into it...and feeding the birds and fish....then about 3 times a week off to the gym for a modest, but taxing work out and some aerobic exercise. Back to prepare lunch for partner and our friend who lives with us...and then a nap in the afternoon...or laundry...and back to start dinner...and then another walk with the dog. The Xgeva IS giving me some crazy (not long lasting) feelings of bone pain. Kind of like a bruise in the ribs. It usually only lasts a few minutes and then passes. Doing my best to remember everyday to "Be Thankful" as I have it embroidered and framed by my sister and just at my bedside. Planning our Summer Getaway Trip...to get away from South Florida HEAT!!! in August/Sept. Staying in the U.S.....and seeing some of the northern part of the country....Minneapolis for the state fair and a week of just hanging out...then driving to Mt. Rushmore on a 2-day drive....and then doing a GATE1 Trip...we did one last year in England, Scotland and Ireland...and they make it easy for people who need a nappy....the busses are comfortable and lull almost every one to sleep....and then ending in Salt Lake City where we will hang out with a friend...and then take the California Zephyr (Amtrak, "most scenic American Train") to Sacramento to hand with a friend...and then fly back home from there. I have to plan everything to work with the monthly Oncologist...Xtandi requires blood work every 4 weeks. We are just under the 30 days...hoping to feel as good then. Last PSA was up a little...but last scans looked very good...so hoping for the BEST. If you read this far...I started my "Beard checks" when I got my cancer diagnosis 5 years ago...this is kind of the anniversary. After chemo and starting Xtandi...for a while there wasn't even enough for a goatee and mustache...but a little has come back. Happy Sunday!
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greatjohn
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Wow. I didn't know beards get affected. Mine's very much woven into my character. I'd hate to lost it. I'm on Lupron and have had radiation and a robotic prostatectomy. To you know if losing beard hair is typical? Glad you are feeling so good.
I think it might be "typical" after chemo. Even my eyebrows almost disappeared. I have been shaving my head so "baldness" has been "woven into my character" for over two decades, so I don't know if I lost any hair off my head...LOL. I don't have any hair under my arms now either....and barely any on my legs. If I hadn't already done chemo..and didn't keep doing Lupron and then add Xtandi to the mix...I might have a more substantial beard come back, but this appears to be as good as it's getting. The hairs grow so slowly I don't have to "trim" my beard (over my lip) and shorten the goatee part....but about once ever month.
I am on Trelstar (like Lupron) and 2 Xtandi per day. I have basically no body hair, except for a small amount on my pubes. But I have a beard / goatee and a fair amount of head hair and am going the opposite way from you - getting it long enough for a real ponytail. Keep up the good fight, and let us know how your trip goes! Kick the PCA Bastard.
the vacation plan is great, go for it! Don't forget to take BIRM with you!
working on trying to figure out the logistics of that....because the first leg of the trip is a flight. I'm going to have to take 2 NEW bottles, unopened in my checked luggage. After opening they require refrigeration...so I am planning on carrying a small cooler (like for lunches) and keep changing the ice in it....and since we'll be gone almost a month...I'll ziplock the little that's left and assume it will survive in the checked luggage for return flight. (and hopefully not explode from air pressure and "BIRM" all of my clothes)
There are mini portable coolers with Peltier effect (size of a soft drink cane) that can be connected to any appliance (if you rent a car you can attach to the lightening cigar place).
Happy birthday ! Also congrats on five years ... your plans sounds exellente amigo. Glad to here that you’re feeling well . That is an achievement .. live love and travel.. very cool . Peace greatjohn ..
As I mentioned to someone else....planning and looking forward to a big holiday is 1/2 the fun and it keeps me motivated (ESPECIALLY through Ft Lauderdale's brutality hot summers)
(If you have some time in Sacramento, be sure to check out the Lavender Heights neighborhood.)
After over 5 years on Lupron, then Xtandi, I'm a lot less hairy, too. Even my nose hair disappeared!
I saw a commercial on TV the other day and turned to my spouse and remarked, "Well, what do you know? My underarms are 'fashion ready' for the summer, too." Ha. Ha. Ha.
Every now and then I also let my beard grow out. Then I shave it off because I realize it still makes me look too much like an old billy goat!
My MO gives me script for the blood work and I go to my local Labcorp. When I go away I take the script with me and when blood work is due I head to the nearest Labcorp. I get the results online a few days later and if results are OK I don't even bother to call MO. If I see a change in labs I call my MO to see if there is anything to be concerned about. Makes traveling easy.
Don't know about Labcorp. I did travel to Austria with full travel insurance. I told my MO when I was leaving and returning and he told me to get a blood test a few days before leaving and as soon as I return home. Six week gap was not a problem.
yes...It was only when I added Xtandi to the mix that THEY require monthly (4 week) blood tests. I would have been able to do it long distance...but this road trip was easily fit between my two monthly visits (we'll be leaving the day after one...and returning about 3 days before the next).
What an inspiring post! You crldbrate what you have, you anticipate more good things to come and do not waste time lamenting what you do not have. Thank you. Inspiring, strong modeling.
it's funny you mention that...but that is the ONE blessing out of this. NOT being sexual, not being "sexualized" and not being distracted by it. I've always know there was a lot more to me...but it's always been hard to get people to notice LOL....now I start my conversations with people (not really, but almost) with "Hi, I'm John and I'm castrated"....
it kills me that people who seem to be fighting for their lives....worry about erections. I worry about my taste buds, ability to eat, ability to take walks and enjoy nature, and garden and take holidays.....
trying to get the local OPTIONS magazine to let me write a column on prostate cancer. So far, they have ignored my recommendation. Seems important for the LGBTQxyz community
Well...yes. But once on Lupron....I'm pretty much in the "Eunuchs" community
(E community...lol...uses lots less of the alphabet.) It would be smart to talk about staying on top of Psa, though as more and more younger people seem to be getting it. I was 57...and thought was young until I started seeing the people on this site in their early to mid 40s.
Glad to hear you are still feeling decent and travelling. Your attitude inspires me and I too am staying positive. 6 months since RP for me and still no PSA ! Yeah , but I just about bit it from infection a 3 months ago. Good now. Still I know what can happen so as I did in business I expect the best but plan for the worst. We are going to Nova Scotia in May for some B+B's then fishing time in northern Alberta where I live. Have a great trip!
I look forward to your updates. So glad you're feeling so good! The trip sounds wonderful! My husband is feeling great and continues to use 7x BIRM, too, (along with lots of other supplements). My best to you!
Glad you are keeping busy and have plans...plans and projects are a very healthy way to keep happy..what is BIRM. Have a wonderful holiday and keep excersizing and live in the moment and be happy with each day..
Looking good sporting the beard mine isn't coming back yet, I also lost ALL but a few hairs for eye lashes, but on the flip side PSA from 1790 Jan. 2018 down to 0.52 today doing the standard stuff Lupron, from the start then 10 rounds of Chemo (10 rounds was my choice to hit it hard) little to no side effects, but I worked my ass off exercising and working HARD at everything physical, to ward off side effects, now on Zytiga for 6 months and no noticeable side effects. now to the good stuff your trip looks great I have been to a few of the places you are headed too you should have a great time. I also am planning a trip out your way on my motor scooter from AZ. to the Gulf coast in Texas than follow the coast to the Atlantic, from there to Savanna then to my son's house in Asheville NC. from there up the blue ridge parkway then head back down to Nashville and Memphis TN. from there I'm not sure so I'll just go wherever the road leads me. Keep up the good attitude and keep on keeping on with living a big life. and to the rest of you brothers in the fight, Greatjohn is an inspiration to all of us as are many on this forum, I may not contribute much but I never go more the a couple of days without visiting and following all that this forum and its many participant's have to share, Living in a small town this place has been a mental life saver THANKYOU TO ALL the brothers and their care givers, my best to all.
Hey great John glad the Birmingham is working. Where do you get yours and roughly the cost. Been Lupron for 8 months Zytiga going on 4 months prednisone also psa last check a month ago still at 4. Maybe lower yesterday s test. Need to take xygeva, but nervous about the jaw damage, due to my teeth need attention, two extractions, mr brothers a dentist, and he keeps postponing my appointments. My oncologist says I h ave to start xygeva very. Soon even without the dental extractions, glad for you, interested in the brim I need more energy!
my dentist did NOT want me to take Xgeva...although my teeth are perfect. I finally got the "approval" from him....after I explained this was to keep me alive. Xgeva does have me worried...I'm done 3 shots now...and I already get bone pain in my ribs...my jaw...and wrists...but it only lasts for a few minutes. It's a strange feeling...but luckily, so far, it's just quickly coming and going.
I get my BIRM from the BirmUSA people....that are the direct liaison to Dr. Cevallos who invented it. Here is the contact link (it's usa@birmproducts.com). Write to Fernanda and tell her your "story"...she'll give you contact information for a consult (free) by email with Dr. Cevallos and he will recommend dosage.
Thanks so much greatjohn! My brothers a dentist, and my teeth are not that great, go figure. MY ONCOLOGIST SAID IF I DONT GET THE DENTAL WORK SOON HES GOING TO PUT ME ON XYGEVA ANYWAY. This worries me, I can feel my bones feeling weird, took a bad fall of a stage, I play in a band, but nothing broke, I was scared, just my left, bad knee with no miniscus is acting up. Keep fighting greatjohn and thanks for the quick reply.’
May your travels provide more pleasure than you expect and the weather gods bless you with favorable weather throughout. This travel quote by John Steinbeck (my favorite) from the the opening of Travels With Charley is still the best description of wanderlust I know. The last sentence perfectly sums it up:
“When I was very young and the urge to be someplace else was on me, I was assured by mature people that maturity would cure this itch. When years described me as mature, the remedy prescribed was middle age. In middle age I was assured greater age would calm my fever and now that I am fifty-eight perhaps senility will do the job. Nothing has worked. Four hoarse blasts of a ships's whistle still raise the hair on my neck and set my feet to tapping. The sound of a jet, an engine warming up, even the clopping of shod hooves on pavement brings on the ancient shudder, the dry mouth and vacant eye, the hot palms and the churn of stomach high up under the rib cage. In other words, once a bum always a bum. I fear this disease incurable. I set this matter down not to instruct others but to inform myself....A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find after years of struggle that we do not take a trip; a trip takes us.”
― John Steinbeck, Travels with Charley: In Search of America
so GJ would you do me a favor and take a picture facing the other way I wanna be able to show it to my green grower when I'm picking out Honeydews... Thanks....
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After 21 months of feeling good, fatigue now?
Lets Read Article--> ncbi.nim.nih.gov/pmc/articles/PMC5356655/---SubJect BIRM
PSA still low but cancer progressing
