Kaiser Xtandi follow up post. - Advanced Prostate...

Advanced Prostate Cancer

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Kaiser Xtandi follow up post.

Kaliber profile image
26 Replies

Just fyi for the guys that asked, ……. I saw my new oncologist today and I’m Very impressed with her. Sharp as a tack , very well informed and bright, a sweetheart as others have said. she is new and already held in high esteem by her peers. I feel lucky to have her as my next oncologist.

About Xtandi …. There does appear to be a move for Kaiser to move away from Xtandi to other drugs instead. It’s a regional pharmacy initiative, I suspect to reduce costs but there could well be additional/other issues involved too. Definitely it’s a thing. I think I heard the st. Louis office but don’t quote me, might be way off. “ There are a lot of exciting new prostrate cancer drugs and treatments in the works and new options are already in play “ , I’ve been told. Love to hear that.

In my case , Xtandi has worked so well for me, plus i have serious issues with trying to use prednisone Highly unstable bg, squirrelly bp and others. My new oncologist is keeping me on Xtandi, despite the initiative, because it’s the right thing to do, plus I’m a poor candidate for the prednisone side of zytiga-prednisone as well. There will be flack for her but she is the one with the responsibility, she should have the final say. Xtandi is back on my formulary and zytiga- prednisone are gone now. Had me scared, trying to think of how I would have to try to manage prednisone , but all that is history now. Big relief from hefty anxiety that began back before Christmas . Ima looking forward to a positive vibe moving forward into 2024 … and my own personal initiative to have more QOL family time while I still can do something…. Even in a wheelchair. Big relief and big smile.

It’ll be interesting to see if stepping away from xtandi actually works for Kaiser , it’s a big move . Worth watching for sure. Kaiser surely struggles like any other huge bureaucracy , it’s expected.

Thank you buddies

❤️❤️❤️

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Kaliber profile image
Kaliber
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26 Replies
treedown profile image
treedown

Thats great news!! Thanks for the follow up.

Kaliber profile image
Kaliber in reply totreedown

Love ya buddy

❤️❤️❤️

Tall_Allen profile image
Tall_Allen

Great to hear! I like that Kaiser allows oncologists to call the shots - that is unique. I wish Kaiser would do a randomized comparison test of Zytiga, Xtandi, Erleada and Nubeqa.

Kaliber profile image
Kaliber in reply toTall_Allen

to me it seems like a pretty big deal , I can imagine how much Xtandi they must buy. Additionally Xtandi is kinda moving to the front of the line in adt , seems like lately. Prolly gonna be interesting to see this play out.

My new oncologist definitely wanted to take me off it as well but it , as she said , it just wasn’t the right thing to do. My last oncologist , which wasn’t there very long, tried to keep me on it , but other forces there kept taking it away from me. She was there briefly -temporarily and probably had near zero leverage. My new oncologist is new and permanent and I’d guess has the usual 6 month organizational , fluff her up, grace period. Kinda looks like it’s going to depend upon the circumstances, with a strong emphasis to ditch it. Oncologist there seem to be strongly influenced by organizational pressures.

❤️❤️❤️

garyjp9 profile image
garyjp9 in reply toKaliber

Where are you being treated?

Cyclingrealtor profile image
Cyclingrealtor

Kaliber super happy you landed in the hands of a unicorn at Kaiser.

I wish I could say KP has any type of survivorship program or integrated care team here in Nor Cal. The only way I ended up in the Oncology department wasn't because I had a recurrence and a psa over 2.0 as I was told was needed.

After sharing my experience with a higher ranking person at KP, they unknowingly to me, filed a grievance on my behalf. I was given an advocate who gave me the referral to oncology. This allowed me to have better care without having to have sicker. There was NO multidisciplinary care team, or integrated care, just my urologist and he would not give me a referral to Oncology.

Cheers to a continuance of Xtandi for you!

Kaliber profile image
Kaliber in reply toCyclingrealtor

yayahahahaya love the unicorn. No kidding, the anxiety was killing both of us, the relief is wonderful.

Boy Kaiser has a lot going on behind the curtain. My wife was a field trouble shooter ( physician liaison ) for UCSF Medical Center, S.F. . For 20 years. She knows every trick in the book and then some, she’s seen it all. Thank goodness that can of worms didn’t have to be opened. Yayahahahaya.

Thank you brother , preciate it.

❤️❤️❤️

TeleGuy profile image
TeleGuy

👏👏 So happy to hear the news! And it sounds like the Hammer didn’t have to go to work? Nevertheless, this stuff is unnerving!

Kaliber profile image
Kaliber in reply toTeleGuy

yayahahahaya. The hammer has the kraken for a pet, just say’in It is unnerving, very much so. These are literally life and death decisions being made.

😂😂😂

Lettuce231 profile image
Lettuce231

That's the best news I've had so far this year, so pleased for you, such a relief.

Your new Oncologist sounds like she's heaven sent.😇

Grab 2024 with both hands our dear brother 🥳🥳

Kaliber profile image
Kaliber in reply toLettuce231

It feels like I slipped in under the cusp of a big change at Kaiser. I’d guess there are others at my Kaiser and wonder how many other drugs they are targeting. People have mentioned “ corporate driven medicine “ , sounds like this may be an example. Definately, tho, I don’t know what’s going on fully. But my little chunk of involvement in the process gestures at that, dunno of course.

Thank you brother lettuce , preciate it.

❤️❤️❤️

16starsky profile image
16starsky

Brilliant news ! Your new OC sounds good to me. Wishing you continued success with all your treatment, you can chill a little now.

💗💓💔 Kim and Clint xx

Kaliber profile image
Kaliber in reply to16starsky

Thank you so much Kim , I appreciate it. Yea the tension and anxiety of not knowing where my treatment was going was rough for both of us , but “ chilling “ is already happening and feels pretty good too yayayay yayay yay. Weather here been a little British like last couple of days, 6.6c and dense foggy. Gonna head back up to near 21.11c by end of week.

Wishing you and Clint a great new year as well, hope you are enjoying your orangery this winter if you have heat out there.

❤️❤️❤️

16starsky profile image
16starsky

Heat !!! are you kidding. The gritter has just gone up our road (5.15pm) its 6 c here now, but expected to 1 c at around midnight....

Snow expected around the 19th 😬😨🥶

Take care xx

dockam profile image
dockam

Oh F yeah Bruddah Kal, that's so Wonderful😂

Your new MO is Awesome and did what was right not what was cost effective.

Woo Hoo

youtu.be/37GihMpoc24?si=Mb9...

QoL on

Love ya Big Bro💙

Kaliber profile image
Kaliber in reply todockam

love kool, yayahahahaya. We both have Kaiser I think. I never thought I’d see Kaiser treat someone like that. Said that to a friend here ( whom coincidentally. also has Kaiser. ) and he laughed and asked if ive been living with my head in a hole in the ground. 😂😂. Just hope it’s all in the rear view mirror now. Hope you can get back down to the warmer coastal parts and lost that ice up the mountain . Next week it’s supposed to warm up considerably.

Love ya back buddy

❤️❤️❤️

dockam profile image
dockam in reply toKaliber

Yup, on Kaiser also, was on like Blue Cross, but after 2015 with 15 chemos, scans, ADT, lab work -they raised premiums crazy high😬.So went back to Kaiser, I do love the web access to labs, and they okayed my going to AIS for Cabazitaxels and IMRTs, which so far is working😃

I'm in Ventura for Beach Therapy and to swap out the Memorial Tile men's list - adding a couple😭 One was a pt (grand daughter worked my front desk for a bit), going to His Service next Sat pm

Imma do a QoL post Sunday pm

Much Aloha🤙 and Love💙

Ventura Sunset
Kaliber profile image
Kaliber in reply todockam

The beach and sunset sounds wonderful. Never gets old does it. Soak it in buddy .. we has a “ red “ sunset today. Never saw it like that before. Quite literally profoundly red. Reflecting off all the white stucco here, it was amazing and astonishing looking. Wish I grabbed a picture.

and thanks for all your memorial work too. Big heart in that body.

❤️❤️❤️

dockam profile image
dockam in reply toKaliber

Yea, beach sunsets are a huge part of my QoLing😂

You're welcome and totes my pleasure to honor Men taken by F'in PCa. It's a natural progression of my wearing the list on my back at in person events since 2015

youtu.be/fGSs33DQ1F0?si=gVR...

QoL on

Luv ya Kal

Desert Sunset
Kaliber profile image
Kaliber

oh dear ….. yayay yay yayay yay. I didn’t realize it got that cold there. Wow. Could make a pretty Christmas tho ….. better than the crew I had trimming my 3 scrawny palm trees in the front yard Christmas week yayayay yayay. Winter flowers ( the cool season for us , no real winter here ) are blooming and by the 1st- 2nd week of February, the “ white bloom “ fruit and nut trees will already start blooming. This is a heavy , total, agricultural region because of the very mild winter weather is perfect for growing leafy winter veggies. Contrary to the record ( quite nearby , 45 miles ) mountain snow of last year … so far the mountain snow pack is quite low.

XXX backatcha

🌺🪷🌹🌻🌼

Snow … up in local mountains
CAMPSOUPS profile image
CAMPSOUPS

Happy to hear this. I'll chill better with Svengoolie tonight knowing you'll be in full chill too. lol.

Great news brother.

❤️❤️❤️

Kaliber profile image
Kaliber in reply toCAMPSOUPS

yayahahahaya yayahahahaya. Yes buddy, ima gonna be “ VERY “ chill tonight. Matter of fact, I’m already getting …..uh …. Ah …. preconditioned , starting a few minutes ago ( 3:30 pm ) 😂😂😂. I hope you are also having a nice weekend too big guy. We’ll chill together , ….. that actually sounds kewl . I’ll be relaxing for the first time since “ all this “ started over a month ago. Thank you

😁😁😁

j-o-h-n profile image
j-o-h-n

So this home owner goes to a brickyard and orders 1,000 bricks and says to the delivery man that he wants exactly 1,000 bricks....No less, no more. If there aren't exactly 1,000 bricks I will cancel the order.... So the driver double counts the bricks and loads them into the back of his truck. While driving to the the home owner's house the driver runs over a speed bump and sure enough a brick falls off the back of the truck. Driver delivers the bricks and sure enough there's only 999 bricks and the home owner cancels the order. Get it?

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/14/2024 7:55 PM EST

Kaliber profile image
Kaliber in reply toj-o-h-n

Of course , …. Guess I’ll just go sit in my corner , contemplate my navel, and zip it.

Love ya buddy

❤️❤️❤️

Bodysculpture profile image
Bodysculpture

Kaliber my oncologist Robert Hughes is a very unique person he has away of making you believe its gonna be ok he still believes it's not long now till we find a drug that changes the world of cancer as we know it

10 years ago many of us wouldn't be here year after year they are getting better much more tolerable drugs with a much better outcome

Gonna keep on training g it seems to be the nugget some of us don't understand

Loads if love Kaliber

Kaliber profile image
Kaliber in reply toBodysculpture

For sure training had stood you well, you are proof positive. Yea ….my new oncologist mentioned a lot of positive things happening too, I’m pretty sure we’d hear about it here on the group when it actually becomes reality.

Just since I started there have been many new treatments, I’d be fine with drugs like aids has. Doesn’t have to be an absolute cure, just that type of remission would work for me.

❤️❤️❤️

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