Current situation

As I've posted, last year I had to give up on Zytiga as it was killing my liver. Pity was that my PSA kept dropping just small amounts for enough months to push me into the new insurance year. My insurance requires two increases over tests at least 30 days apart before doing anything new.

After two increases, there was the war / appeals / counter-appeals to approve Xtandi. With some heavy-handed help from past managers, it was finally approved. In twenty days it has dropped me from a multi-point rise in 60 days prior to 3.8 > 4.0 in the last 30 days. So yes, it is working, and no, I'm not seeing liver function issues.

I am seeing bowel problems, instability while standing, extreme fatigue, and significant joint pain, but I can deal with those. My urethral bleeding has stopped after to 60 days of hyperbaric oxygen, but the stricture is returning.

If I seem absent, that is true. I just don't get far enough into a day to spend as much time here as I would like and still keep my real job. So I'm more the bad cop than good. There are so many guys here that I depend on to be the good side of the house ...

Glad to see that you got approved and that it is working; it must be a real brain drain having to run into walls and doors to get it approved! Regarding this forum, I look in occasionally and rarely see "blocked" threads--lol. I went to the range last week during my sister's visit from ChiTown. She had never fired a pistol before and enjoyed the .22 experience; not so much the 9mm. I hope you get out and shoot your Kimber to keep your sanity!!

Good that the Xtandi is working. Any chance that will give relief to the other issues?

Hang in there,
Andrew

Dear 142,

Glad to hear you're on a new path with XTANDI --- keep us posted on your progress --- I started on ZYTIGA in 2015, after finishing up chemo treatments in the late fall of 2014. As a teacher, ZYTIGA has managed to carry me through this entire school year --- so I'm thankful for that.

Sounds like XTANDI is the better bet for you --- and I'm grateful that you are experiencing some better success with your lab numbers now. Keep your doctor up-to-date on your side effects --- hopefully, they will dissipate as get more acclimated to XTANDI --- and your doctor might have some "easy fix" solutions to some of your side effects.

We have many first-hand accounts here describing our collective experiences with ADT hormone shots, radiation treatments, and also chemotherapy treatments --- I'm hoping that over time, we continue to hear more detailed accounts from the fellows here about their experiences over time with XTANDI and ZYTIGA --- I think it's important that we keep sharing our first-hand experiences with these newer breakthrough medications to help other members, now and in the future.

In a few years, the trail will be blazed for future ZYTIGA and XTANDI users --- right now, the trail needs to be blazed a bit more --- the pathway needs to be better illuminated --- we need more maps of the territory and more compasses laid out next to the trail for future users of ZYTIGA and XTANDI --- even doctors are still assessing the extent of their usage --- the correct timing of when to prescribe these newer medications --- and assessing which patients will benefit the most.

So, some points to ponder in what is "unchartered territory" in some regards, because these drugs are fairly new in the treatment landscape, emerging in just the past few years ... what are the maximum usage limits of ZYTIGA and XTANDI ? Is there one that truly has a clear-cut advantage over the other one ? Can their powers be combined in some new synergistic way someday ? Can we eliminate the problem of cross-resistance that seems to exist between XTANDI and ZYTIGA ? Can re-introducing chemo give a patient a "second chance" with these two medications ? What is the next step BEYOND Zytiga and Xtandi ?

Wanting to wish you well this evening, as you forge ahead with your XTANDI treatments --- keep blazing the trail for others to follow --- and let us know how you are faring with XTANDI !

Sent with my very best, from your fellow "Battle Brother" ~

Iowa State University ~ CYCLONE TEAM FAN

Keep up the good fight. We are with you.

Good to hear from you, 142. Keep fighting the good fight. The stricture thing makes me cringe, and I'm in awe of some of the challenges you and some of the other guys have to deal with...and DO deal with showing great courage.

142 - All the best to you!