So after my MO visit I have a new game plan. Restart ADT, Lupron and Daralutamide or Zytiga but prefer the Daralutamide so hoping that gets approved. Then radiation to the 4 spots that showed up on my PMSA PET Scan. So MO Appt Thursday, RO appt today, 1st Lupron jab on Wed the 15th. My MO said to check with RO about starting my 2nd gen asap or after radiation. A little concerned if I might get a Lupron flare but I'll cross that bridge when I come to it. Hopefully I tolerate the ADT as well as I did the first time around. I rode my bike to MO visit and turned it into a 24 mile ride because it was a nice day. I plan on riding to radiation treatments again but its a different facility so have make sure I can find a safe route. Riding to my Lupron injections shouldn't be a issue. Here's my stead which I purchased as a WGAFISSI bike, but has turned into one I like quite a bit.
New treatement plan: So after my MO... - Advanced Prostate...
New treatement plan
Awesome about biking, good for you Brother. I hope that all the upcoming treatments do what they plan 😁
Bike On Brother
Me too. My MO said we'll address it again in 2 years. That's sounded nice but I said "if I am not CRPC by then" and he said "you won't be". If I hadn't have gotten the PET I would not know where it was yet and I gotta say having it in my spine has me a bit concerned to say the least. I did read that its better when the mets are axial (which mine are) as oppose to appendicular so I'll take that as a win.
you won’t be ! I agree! 🙏✌️
Sound like a good plan and I'm sure they'll feel better when you get all of the details confirmed.
Sweet bike. Cycling is my go-to activity and I love it.
#justpedal you'll get there!
It's a bit of a relief knowing what's going on but it was nice pushing it off as well. So its all good.Biking is my main hobby and I like working on them as much as riding them. This is a late 90s mtb that I paid $80 for. The only thing left from that purchase is the frame, fork and headset. Nothing to take into the mtns but its fun enough to ride to town and built to carry stuff.
You are amazing ! Riding to the MO! I like the bike . It looks ergo ! Nicely decked out . Knock the pc out! You’ve got this! I’m glad that you now have a plan . Keep rolling ! 🚲🚲🚲🚲
Thanks. Just got back from RO. Will do the pre next Wednesday, same day as my first Lupton jab, and the radiation within the week after that. 5 sessions. Sounds like I'll be back in the thick of it in no time. Hasta La Vista testosterone.
Not sure I will ride to radiation, there's a bridge and 4 lane road that would need to be dealt with but if it's a nice day on the first session I will give it a try. Doubt I'll do it if raining, there's too many crappy drivers around here. Turns out my massage was the 15th so had to push it to the 26th now which is a bummer.
Have a nice weekend with that lovely wife of yours and cute little dog.
Your positivity will help … but any treatment can takes a toll ! Eat rest recover and get through it .. Don’t ride in the rain . When my pc specialist told me,” You WILL die of pc!” I thought “ what about a yellow cab or bus or falling off a Cliff? I said Addios to t and manhood 8 yrs ago . Some guys try to hang on to the macho . They are much stronger than I am . I m just happy here,not in the hospital and not suffering like so many of our friends are . We always see someone worse off than we are . If you have savings enough to retire and have fun plans ,do so ASAP. U do u ! 🙏✌️
Thanks Slim. I can't agree with you more and one I am sure my family is in a good place I'll do it.
It is all about how we can help out our family! Good man . 😎✌️
Now that you have a game plan it is one less worry.
You have built that bike to last forever, apply that same mindset to your body. Best wishes.
Thats the plan. The extra hour of light we get this weekend is the start of my biking season so all I need is some timely good weather. Hoping the radiation goes as well for me this time as the first time. The RO said this is nothing like the first time but a couple of the spots pose some vertebrae risk to esophagus, salivary glands and vertabrae.
Awesome bike! And is great to bike to/fro the RT... The increased oxygenated blood will help the RT efficacy, or so I have read somewhere or another Don't quote me, lol
I would ask about adding the Darolutamide prior to the RT as well. My MO did this the month prior to my Whack-a-mole therapy for spots which showed up in my PET Scan. The added "inhibitor" certainly increases the effectiveness of the Lupron, so why not? Plus it doesn't cross the blood/brain barrier and therefore tends to have less of a SE profile. When I added it, my PSA dropped like a rock to undetectable levels once again, so I was very happy to reach that prior to the zapping! Again, something worth discussing with the MO & RO.
Thanks the RO said go for it so MO was being cautious which I like. Kaiser listed Daralutamide on my account under Pharmacy so I am hoping that means its approved. Glad to hear it worked well for you. I hope to hear from their pharmacy soon to be sure. Hopefully I can get this ball rolling in a few weeks and get back to my life plans.
Darolutamide is the first prescription I've ever had to sign for upon delivery, lol. Kind of stinks because I need to be there to receive the delivery. Don't have issue with porch thefts in my area but can understand due to the "cost". It will need to be filled by a specialty pharmacy as far as I'm aware, adds to the complexity but once it's set-up is easy.
Haha, Life Plans, made me chuckle as nobody understands that better than all of us...
Kaiser used UPS for my Zytiga and pretty sure they just left it a couple times if memory serves. I guess I'll see once they contact me. I work from home so being here isn't usually a problem if I know its coming.Yeah, and that's why this forum serves fir much of us. Words like life plans don't need explaining
"A little concerned if I might get a Lupron flare " F.Y.I. One of our members posted this 9 months ago.
HealthUnlocked: Testosterone “Flare” (Or Testosterone?) Timing to Optimize Salvage Radiation Therapy
Keep riding and hit the weights in the gym
Put a split seat on my bike to lessen pressure to prostate area.
Well if you mean a seat with a groove or slot down the middle I have had a range of results on those bad with early versions and good with newer ones. I have a couple versions on different bikes now. My most comfortable seats for 50 + mile rides are similar to the one on this bike in that they are leather but a different profile altogether. This is a Brooks and the one I tried to break in during my first radiation treatment which in hindsight wasn't a great plan. Most of the rides I did then were rarely more than 20 miles but I did ride 5 days a week for 8 weeks or 41 of the 44 treatments. Its still hard as new and has well over 1000 miles on it and if I didn't ride in pants would prove more comfortable I expect. The ride to the hospital and back is about 13 miles. The ride to my RO's new location probably a little less but I haven't ridden it yet. This bike may end up with a slotted leather seat on it soon.
As far as your new seat, if your meaning a literal split seat where two sides move independently I have not tried one of those. Since my prostate has been described as scar tissue I am not sure pressure there is a big concern for me anymore but comfort sure is and they may equate to the same thing.
literal split seat where two sides move independently
Yes , exactly I will send a pic of mine. Maybe too little too late for us but I made the switch not wanting to jostle any of the other delicate items in that area. Once I got used to it, the comfort level is way superior, no more numb nuts! Which I still have regardless of actual function. What you are now using looks like a device of torture to me.
Well I can tell your area gets a lot more use than mine. Look forward to that pic. I have only read about what you havea couple times and if its the one with no nose then its not recommended for off road use which is most of what I ride. The saddle on this bike is a form of torture until it molds to my bottom and then quite the opposite. I have a leather seat that has a few thousand miles on it and it is unbelievably comfortable. Numb nuts do still occur especially on long road rides where I stay seated for long periods. Also ADT effects on my frank's and beans are good and bad. My legs definitely look more road biker without hair.
I ride a forest preserve trail and do not go off road. Sit on seat for entire 14 miles.
Looks like the one I read about it. Good to know you like it. It would definitely be dangerous on a lot of my riding, but I may consider when the time comes I stick to paved trails or get a ebike.
Looks like they forgot to deliver the third wheel and racoon tail.....Vrom vrom......
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 03/12/2023 6:19 PM DST
why do you prefer the Daralutamide? In reviewing the ARASENS trial, it appears that the side affects are similar to Abiraterone; but Abiraterone is far less expensive.
Just to be more specific, I’m on my 3rd round of 3/4 dose Docetaxel and taking an Abiraterone vacation. My MO believes my elevated liver enzymes were the result of Abiraterone and excess Tylenol. I researched Daralutamide, in hopes that a change could resolve my enzyme issue; but saw nothing in ARASENS to support the change. Did I miss something?
Just preference and the desire to avoid the steroids. My MO said I am not ready for triplet because my Mets only show on PETCT, my CT and Bone are clear. So from what I have read of Arasens not sure I am there yet and based on my MO and RO I am not. I also had a serious drop in Lymphocytes on Zytiga and proceeded on reduced 750mg for the remainder of myb2 years. So if my insurance will pay for Daralutamide I plan on giving it a try.
Will be interested to hear of your experience on Daraludimide
My main treatment was 8 wks imrt /w Lupron and the Tak-700 . It worked for me so far? I’ve seen others here have good results from spot RT on metzs .. If it was I ,I’d do everything the doc recommends if you have faith in the mo? If not , find another .I’m thinking this mo is correct .I think this could all be needed to drive the pc down again ! There isn’t one concrete path for us all in pc . Treatment decisions are the hardest part ..I d go with the pro! Talking about mitigating your woes is good . I’m sorry you’re in the lurch right now . Once you decide no looking back . I’m pulling for you to kick it’s ass in! ❤️🙏
Thanks. Seems I am in a treatment grey area. Metastatic on PET but not conventional imaging. Not enough disease for chemo. Whether it's enough for radiation depends on the insurance company I guess. My MO and RO made it clear what they think I should do. I am not at a center of excellence but I don't think their incompetent either. I am lucky that I am still hormone sensitive and if that luck holds out for many years maybe ADT and AA will hold it all down for a long time to come. I rode 12 miles to drop off mail Monday 32 miles Tuesday, and 13 miles Wed to get my first Lupron shot. I really don't want to risk being able to continue that level of exercise. It was during that 32 miles ride, my thinking time, I started 2nd guessing my decision and now having the insurance company taking this long to evaluate it makes me wonder if its the right thing. Could be SOC in 3 years for all I know.Anyway, I know what you mean about making a decision and not looking back and am a firm believer. So if the insurance approves it I will make my decision and if they don't it will be made for me, at least in the immediate.
Great bike. 👍👍 I got the *Hobson Original Easy Seat* - hobsonseats.com/ - to ride ASAP after my Orchiectomy and also after 3D Prostate Mapping Biopsies with Mr. Foley catheter and bag in place. Longest ride was 20+ miles and really not comfortable. Let me know and I can send you mine. 😅
Yesterday's 1st STRAVA ride was around the golf courses and was thinking about commenting - -
No more playing golf but only circumnavigating the golf courses 'cause I got no Tee and lost the Balls
That's hilarious. Can't keep a good cyclist down!
I'm down when Wild Hogs hit me!!! Almost got hit by a car last night while I was riding on the RONTONDA designated walking/bicycling PATH. They turned left ONTO THE PATH instead of the road and finally stopped 5' from me with me already stopped.
Wow, glad they stopped. Pretty sure hog damage would be minimal in comparison. I had a left turner come right at me the other day at some speed. Needless to say quite a few 4 letter words left my lips and went right through his open window. Closest call I have had in along time.
One thing for sure...you will not be invited on bike rides...too dangerous riding with you😀
JUST (STRAVA) got home from drug and food stores almost hit 3 times.
You're a wild and crazy guy!I'm registered for the Mt Washington bike ride. It's right in your wheel house for bike riding. I'm pestering Treedown to join me but his roots are secured...he is not being uprooted easily.
Nice Bike Granpa.
I know, again its a pretty purpose built steed. I had to have a place for my 12 pack after all
I knew you were a "thinkin man". You have a good plan for treatment. We'll battle these bastards together.
I like the sound of that
IT seems to be missing a ""battery""
That's why I didn't use "A know it all."I didn't want to point that out to him.
He's not the brightest bulb in the pack. ;o)
Not ready for a battery yet. Just leg power for now.