I sent my MO a message the other day about all the SE's of Xtandi up to this point because it is really hitting me harder each day. A recent reference to just feeling like staring at wall is appropriate. So I mentioned decline of eyesight and that I would check the literature about what else I am experiencing which is most of the SE's to one degree or another.
The I read about PRES (Posterior reversible encephalopathy syndrome) which jumped off the page. Now my MO has me going in for a MRI. I feel pretty stupid for not having read the sheet though I had researched side effects online and don't remember seeing anything, no pun intended.
Anybody else have vision issues and been checked for PRES to rule it out. I couldn't swear to it yet but only 2 days off Xtandi it feels like my vision is improving.
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just my IMHO and anecdotal personal experience , but a couple of things can come into play with Xtandi . That’d be the regimen of Lupron-xtandi .
First , Lupron Xtandi can and often does wreak havoc with your BG. That combo runs my BG up to very high values (. 300 - 400+ ) and makes it very unstable. I take my blood sugar readings twice a day ( at nadir and at peak , peak is when I get up in the morning and nadir is about 5 p.m. before supper for me ). High blood glucose can and will very negatively impact your vision and left unattended, take away your vision bit by bit. .
Second: Xtandi can and does cross the blood - brain barrier and over long term use causes ischemic white matter brain tissue damage … that ( in me ) also impacts your vision somewhat. It’s not “ all that “ …. and in my own case , it’s all about if I want to stay alive longer or stop Xtandi and risk croaking. Xtandi is keeping me alive and has rescued me quite literally from inpatient hospice. All of my oncologist have been of common thought that I’ve had a near miraculous response to Xtandi, and I shouldn’t rock the boat and risk losing that response if I can continue to tolerate the SEs.
Tharze a lot of damage that hard core , long term, ADT can and does do to our bodies. Boobs, cardiac issues, blood glucose issues, ischemic brain white matter issues and many more. Straight out, most of us have to risk and endure types of body damage , because we are screwing with our normal functions so heavily. For most of us , it’s a trade off of what we are willing to sacrifice - endure , for an extended bit of life. We can’t expect to get something for nothing, or said another way, we have to give a lot to get a little more life.
Just my rambling thoughts and perspective, yours can and will likely vary considerably. Though my vision has diminished a bit, I still see very well and I know I’ll croak long before my vision gets bad enough to be of major concern.
Thanks K. I am sure your right. The vision realization was more a notice of something bigger and I am not convinced it is full on PRES but it is making doing my job much harder. Additionally Xtandi is by far the worst I have felt on ADT since this whole thing started. 3 days off and my vision is almost back to what it was. Kind of weird how it snuck up on me and I pretty much accepted it without thinking. I had a pair of glasses I used for computer use when my eyes were totally exhausted like after a 15 hour drive. I went from not needing anything to "needing" these in a couple months. When I read that thing on PRES I was like WTF is this doing to me?
My thoughts are if Xtandi is this bad I would like to fight for Nubeqa again and if refused reconsider Zytiga. I will give up quite a lot if I stay on Xtandi and nothing changes and more if it gets worse. If I wasn't working full time it would not be the same issue.
That said as always I really appreciate your perspective, it is very helpful.
yikes buddy, I didn’t realize you are still working. It has to be really difficult to work and do Xtandi adt ( or any adt ) I can’t imagine how you do it. I know most guy’s xtandi SEs are lighter than mine but still …… . I’ve heard some say , working and staying in the game helps keep your mind off “ things “ , maybe that’s working for you …. Still … “ working “ …. you have to be one tough guy. I couldn’t even remotely begin to do that. Impressive for sure, … I feel like a whiner by comparison yayahahahaya.
You have a few years on me so its not necessarily a fair comparison. I was diagnosed quite a bit younger than you I believe. But yes still working, haven't had a sick day or a vacation day since 1997 because its my own company. Which also makes the decision to give it up difficult though I am seriously thinking about doing it this year. Its a fairly stressful job dealing with a lot of new people in a fast paced contractual environment. Small mistakes could cost me a lot of money. I have to be sharper than everybody else I deal with.Anyway your words still make sense to me and are never whining anymore than any of the words on this forum, mine included, I guess. I just need to learn how to work through this part of the treatment and might need to seek help in other areas not needed before. I did start acupuncture which I will continue with. It helped last time until covid shut it down. I'll get this 2nd Gen AA thing figured out and continue moving forward.
Your still the poster child of dealing with a lot of shit really well in my book. This forum has always been a source of keeping me grounded about my disease but maybe I am at or will get to a point that I need more.
I really am a lot older , high mileage … put away wet a lot yayay yay yayay yay yayay. One of the cars you see parked in the back row at the sales lot 😂😂😂😂
It does sound like you’ve got a lot to juggle on your plate … and your world considerably more complicated than mine. I full retired when I was 49 years old, the government been berry good to me for the nuke work I did for them. I always wonder if my prostate cancer was caused by some of the work I did for the government as well. I’ll probably never know
I don’t know how you do it considering everything it’s got to be very difficult and unfortunately for all of us it’s never gonna get better either. There’ll be big choices coming up eventually, in your world … tough ones
Hi, already capitulated four years ago see easy for me in that respect.
Retired at 49 must have been nice. I think we all have to wonder where the beast came from, none seem to be spared, athletic vs non athletic, clean lived vs partier, religious vs heathen.
I agree, those choices are right around the corner. My teenager forced me off the couch last night which made me feel better and heading out for a ride now. Eyesight even better today than yesterday IMO. Drs appt was moved up 2 weeks so will decide about going back on Xtandi or seeking other options after that so will only be off it a couple weeks I suspect. Get Lupron jab # 2 a couple days after that.
roger that buddy, I know you’ll handle those choices well. Have some fun QOL stuff today buddy. Holiday weekend and SvenGoolie tonight…. add in some enhancements, wink, wink nudge nudge, and you’ve got a good thing going. Yayahahahaya doesn’t get better than that.
there were some great songs back in that era … great big bands too. The war. , far away places like the South Pacific …. So beautiful, so filled with death and sorrow .. hard ships at home …. Younger people these days would never “ get it “ without being there. I was born in 46 and only caught the aftermath mostly, but did see the full Korea thing. The big one was the heavy tho. Sometimes I think a little dose of those times would clean up a lot of the “ crap “ running around these days. Kinda reality check time badly needed.
Your post and this upcoming Memorial Day are really a sobering reality check. When my kids and grandkids have asked me over the years what combat flying was like I just tell them that “nobody comes home the same”.
Take a minute this weekend to keep all those who died or were physically or mentally harmed by their war experiences in your prayers and thoughts. They and their families still sacrifice.
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