Good results with Apalutamide

[rogerwegner]

I have been on apalutamide for 14 months and my PSA has gone from 4.5 down to 0.14. I have had the usual litany of side effects , I had a lupron shot last month and it was painful for two weeks in my back,the worst ever, I also fell during this time. It was on dry pavement . I was trying to multi-task. I was carrying a bag of groceries and tried to open the mailbox. I went down like a bag of rocks. Nothing was broken.Just a warning that I can no longer walk and chew gum at the same time.

[Hidden]

Great news, the apalutamide that is. You might want to stop playing the bounce off the concrete game.

[rogerwegner in reply to Hidden]

I find that I must concentrate on my every step and motion to stay off the ground. Even in the kitchen,I can not turn quickly. My feet do not seem to be able to respond as fast as my upper body.

[Hidden]

Hi Roger...I took Apalutimide for @ 18 months...it worked great for me, but I took one to many face plants and my doc took me off it. Haven’t fallen since. That said, however, now I start Taxotere...then on to Darolutimide

[rogerwegner in reply to Hidden]

Hi CRK2 ,When you fell were you walking or doing some other task?

[Hidden in reply to rogerwegner]

I only hit the ground three times and each of them were without warning. The first time I was cleaning up a room in my house, second time just walking in the yard, and the third time walking on my driveway...tore up my face on that one. I had many episodes that I managed to catch myself before hitting the ground.

Have you been watching your blood pressure? Mine was all over the place while on the Apalutamide...it was the most difficult to control and I think it had a lot to do with the falling.

I have to say, however, my PSA was shooting up like a rocket and the apalutimide reversed it just as fast. I was amazed at how effective it was for me. The Daralutimide is supposed to be as good but with fewer side effects. We’ll see, but it’ll be a while as my chemo sessions start on Jan. 9...should be done late April

[rogerwegner in reply to Hidden]

Hi, CRK2, That kind of fits with the way my falls have occured. I did not check my blood pressure ,when they happened. What I did notice is that I seemed to have no control or ability to reach out to stop the fall. I was actually touching the mailbox and in the bathroom my hand was just inches from the grab bar and I could not stop the falls. I will consider switching to daralutamide if this keeps up. I have just been very lucky so far that I have not been on the stairs when these events have hit me.Thanks for sharing, no one else has been were you have been. Roger

[Hidden in reply to rogerwegner]

Keep in touch... I’m always happy to share. As I understand it, falling is not a real common side effect...but for those of us who have experienced it...it’s a bit unnerving. I even had a brain scan after the second time hitting the ground...thank God they only found empty space in my head!!! The air cushions the fall...lol

[rogerwegner in reply to Hidden]

Hi, They never told what was in my head, just that I was not bleeding. Have a great Holiday !!

[podsart in reply to rogerwegner]

Did u get any sense regarding whether you will get insurance coverage on the daralutamide.?

[rogerwegner in reply to podsart]

I was told that the grant is for my cancerous condition and not for any specific medication, so it can be transferred to the new med. PAN has been great to me. Good luck,Roger

[Hidden in reply to podsart]

I think my insurance will cover the Darolutimide...but we’ll see...the Apalutamide was really expensive, I can’t imagine that the Darolutimide would be more.

[rogerwegner in reply to Hidden]

I just checked and my plan with Humana does cover daralutamide but they use the common name Nubeqa

[rogerwegner in reply to Hidden]

I think that they are all aiming for the same price point. More than we can afford without some assistance for a donor like PAN

[Danielgreer in reply to rogerwegner]

Hi rogerwegner, I’m on Darolutamide and haven’t had any balance issues. I’m even able to play golf and stay balanced although I’m still not very good 😀! Hope you can fix your balance.

[rogerwegner in reply to Danielgreer]

I think that my problems are also compounded by the brainstem stroke that I had after 7 years of lupron, I am just lucky to walk again. I was paralyzed on the right side, but therapy got me to walk again although I do walk like a drunk. Keep up the golf it is good for your soul and your balance, Have a great Holiday. Roger

[rogerwegner in reply to Hidden]

Hi CRK2, Let me know how that does for you.

[rogerwegner]

I would like to think so. It would be such an easy answer.

[Boywonder56 in reply to rogerwegner]

No it's a side effect of erleada I know I've been on it for 3 years have the scars to prove it

[rogerwegner in reply to Boywonder56]

Are you still on Erleada ?

[Boywonder56 in reply to rogerwegner]

Yes im in titan trial...they just unblinded it and found ive been on the real shit...not placebo for 30 mos.....i reached nadir .oo7 at 7 mos...psa has crept up to .5 after 2 years <.01...dont know if im headed to chem .recurance but they said 5yrs was all they could promise...or hope for....so time to. Put the nail pouch up and do some more bucket list stuff...ho ho ho to all b.w.

[rogerwegner in reply to Boywonder56]

Good luck with the next step. Tell us what it will be.Roger

[rogerwegner]

Hi, I do think that staying upright should not be that hard, but shit does start do get more difficult at 76. It is a lovely age, I feel lucky to have reached it. Have a great Holiday !!

[Bebby1]

Lol

Great sense of humour

Good for you with results

I hope it continues 🙏🏽

[MateoBeach]

RogerW this is a very serious call to action as you already recognize.

Yes, considering and discussing a switch to darolutamide is worth exploring since it does not cross the blood-brain barrier.

And also check your blood pressure at your doc's office preferably. First lying down and then upon immediately standing. If it drops more than 10 points and/or your pulse goes up more than 10 beats it indicates risk for orthostatic hypotension and falling risk. Easy to check. But you do not report feeling dizzy so that seems less likely.

Being on ADT for PC causes loss of muscle mass and strength. This naturally effects stability and postural corrections, etc. It would be very useful to get a personal trainer a couple of times a week for a month or so to give you a program of functional strength exercises for core and leg strength, balance and postural stability. I started this recently and really enjoy it. My wife too, who has no cancer and is a long time trail runner. At 68 she recently fell on a familiar easy and flat trail, hit her chin and broke her jaw on both sides (subcondylar). Very difficult and painful recovery.

Finally, I would take a look at the multi-tasking you mention. We all do this when we are young and coordinate complex threads of tasking seemingly with no thought at all.

There comes a point where this is dangerous as you found out. It can actually be very enjoyable to slow down and be mindful about doing one task at a time with awareness grace and care. A zen-like purposeful approach that actually feels very nice.

[rogerwegner in reply to MateoBeach]

Thank you for the response. You are right it is time to head back to the gym. Just this morning I toppled over while trying to get the scale out of its hiding place under a kitchen cabinet. I did not hurt anything but my pride. My wife had to help me to my feet. When I see the nurse navigator I will start the process to change over to Daralutamide. This is just happening much too frequently. Have a great Holiday,, Roger

[Hirsch]

Don’t you still lift weights?

[tallguy2]

Thank you for posting this. I may be starting apalutamide in the spring and appreciate your heads up on fall potential.

[rogerwegner in reply to tallguy2]

I just did not think that I would be hit with that side effect, but it showed within 3 months starting with vertigo and the next day a fall in the bathroom when I hit my head on the bathtub and my wife had to help me up. I had some road rash on my face from that one. The urologist just brushed it off and told me to take more calcium for my bones, He is not my favorite doctor,but there are few urologists in town.

[rogerwegner]

What an animal !!

[rogerwegner]

They knew even back then !!

[j-o-h-n]

Me too..... Will be seeing a neurologist on Friday 12/27.... Walk like a drunk and fall like a clunk... (only lupron, casodex and old age)...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 12/23/2019 7:35 PM EST

[westof in reply to j-o-h-n]

Hmm... That being said, you write with a bright light!

Best

[rogerwegner]

It will be interesting if the neurologist has any tricks in his bag for these problems. Keep us posted if there is anything new out there for us, Thanks, Roger

[pilot52]

Hi, I do not know really anything about your overall condition , age , ect....I have a good friend who is 79 and still a good golfer...he used to play tennis when he was young...very very high net worth....many homes and a personal jet...health good.....the other day he fell by his pool nearly hitting his head on a corner of a wall which could have been a game changer...He for decades felt like he could go on forever without a change...Other than golf he does nothing physical.....and golf is not physical if you ride....Ok that is his history.....his problem and the number one problem why we fall as we age is not emanating from the cerebellum but weak legs...we tend to shuffle which causes us to get a foot to get hung up even on smooth concrete....and down we go.....Everyone needs to strengthen their legs...If only you walk be very conscious to pick up one leg and place it and repeat...sounds stupid but it will wear you out if you do very little other exercise...I convinced my guy to get a Peloton and he is 5 rides into it and loves it..we will see if he will keep it up but the fall scared him....Anyone who considered a Peloton I will be glad to help them get started correctly....I actually had a physical training company for pro Moto-Cross riders and produced AMA champions...( quad riders) I am now 2 1/2 months and 88 rides in on the Peloton...I have always been pretty good about physical training....I have gone after this with intensity and I have 0 fatigue now being on Lupron + Xtandi....I eat clean, and drink athletic greens each day along with different protein drinks...Very little dairy and I do eat egg whites from organic eggs....a little concerned about high concentration of choline in the yolk...Lift weights , play golf, pickleball, paddle board, and fly angel flights.....I work hard at the mental and physical side but what else do we have to do...?? I was dx 2016 all 12 cores Gleason 9 so I stay after it....I feel great everyday , have no other health issues...I say all of this just to give you a base line but if you give me a reason you cannot exercise I will find you a way to do something... Good Luck, Blue Skies, Sky King and Penny (woof). .....Any questions let me know....

[rogerwegner]

Thanks for the input. I am working hard at staving off the side effects of cancer and aging. My biggest side effect of the medication lupron for 12 years was my brain stem stroke 5 and1/2 years ago. I did go down hill skiing this past weekend with some assist getting of the lifts and it was great to be back out on the slopes.