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Posted 8/3/2021 10:21 PM (GMT -5)
Hi Guys

I had 5 sessions of SBRT last Nov / Dec 2020 it dropped my PSA from 14.1 to 0.3 in 60 days. Well being on Zytiga my PSA did not stay down as we had hoped. My journey with zytiga has now stopped as of last night after 3years. My PSA is doubling ever 30 days for the last 3 months, it now sits at 3.1. I am now being switched to Xtandi starting today. I will post any side effects and what it does to my PSA.
Posted 8/4/2021 7:49 AM (GMT -5)
My hope is that you will do well on Xtandi, and that your PSA will begin a move downward. Keep us posted, Everton.
Michael
Posted 8/27/2021 5:10 PM (GMT -5)
Well folks short run on Xtandi, did not get a full week. I cannot remember much about the experience, swollen lips and I bite one, red marks on nose that went away 1 day after I stopped. I could not fend for myself, no memory of passwords on any electronic devices I own, complete fatigue. My doctor cut me to 3 pills then right off them.

I do have an infection i am fighting and they are wondering if there is a connection. I am staring down the chemo route again as I just finished 5 - 6 weeks ago coming off Zytiga after 3 yrs.

Not fun, but am still positive.
Posted 8/27/2021 6:53 PM (GMT -5)
Everton,
Maybe you could try Erleada but it has a similar chemical structure to Xtandi, so it's possible you might have problems with it too.
Posted 8/27/2021 8:47 PM (GMT -5)

mattam said...
Everton,
Maybe you could try Erleada but it has a similar chemical structure to Xtandi, so it's possible you might have problems with it too.

Mattam Many thanks I will ask my M.O. as it is approved in the Great White North ( Canada ) ;)
Posted 8/27/2021 8:58 PM (GMT -5)

Hello, Everton ----

Any chance your side effects with XTANDI were indicative of an allergic reaction to the medication? Just a thought that occurred to me, after reading your update.

If you pursue a new round of chemotherapy, I wonder what your doctor might think about re-trying ZYTIGA, after that?

There was the idea, some time ago, that chemotherapy can create a potential "clean slate" effect --- perhaps allowing a previous medication to perhaps work again.

Just a possible topic of conversation for you & your doctor.

My best to you ---
CYCLONE - # Iowa State University
Posted 8/28/2021 8:37 AM (GMT -5)
Sorry to hear that news, Everton. I didn't last long on xtandi, but 2 years later I am still .001 and still taking Lupron and xometa. Xtandi gets some credit for the low PSA. Hopefully you will find another med to take, but xtandi does have a fairly high drop out rate due to side effects. For me it was other worldly.
Michael
Posted 9/17/2021 11:58 AM (GMT -5)
I'm grateful for another undetectable PSA test today. Three months at a time... breathe.
Posted 9/17/2021 1:28 PM (GMT -5)
That is great to hear, Mattam.
Michael
Posted 9/20/2021 6:28 AM (GMT -5)
Update: 4 months after Xtandi took me off my feet I am back to about 3 miles a day. Walking, not running, though I have tried a few sprints. Will try for a bit more mileage today if it doesn't rain too hard on lady Lab and I. Next PSA is next week before an appointment with my RO.

Am doing 16/8 intermittent fasting to try and moderate the weight gain from being unable to do my 45 miles a week running program for 4 months. Good news is a clean bill of health and no mention of radiation damage after last weeks guest appearance on the colon camera show. smile
Posted 9/20/2021 9:37 AM (GMT -5)
Trail Guy,
Glad to hear you are still very active, and I am amazed that you were hitting 45 miles per week. Xtandi took the run out of me in late 2018, but I was at 18-22 miles per week. There are some days where I think about running again. my dogs walk with me every day, and if I don't walk they let me know how they feel about that.
Michael
Posted 9/21/2021 10:28 AM (GMT -5)

Cyclone-ISU said...

Hello, Everton ----

Any chance your side effects with XTANDI were indicative of an allergic reaction to the medication? Just a thought that occurred to me, after reading your update.

If you pursue a new round of chemotherapy, I wonder what your doctor might think about re-trying ZYTIGA, after that?

There was the idea, some time ago, that chemotherapy can create a potential "clean slate" effect --- perhaps allowing a previous medication to perhaps work again.

Just a possible topic of conversation for you & your doctor.

My best to you ---
CYCLONE - # Iowa State University

Thanks for your reply Cyclone, I should get my Genetic testing report next week when I see my M.O.
Chemo is definitely on the table and I will ask if Zytiga is a possibility after chemo. I appreciate the knowledge and caring of this community. I will keep you folks updated.
Posted 2/28/2022 7:55 AM (GMT -5)

Sending this to the top, for a comrade who is starting XTANDI ...

Best to each & all -

CYCLONE
Posted 2/28/2022 8:54 AM (GMT -5)
Thanks Cyclone for the bump!
Your Clones beat us this last weekend! #FireBruceWeber

I get my Xtandi today via FedEx, and will start tonight unless someone tells me it's better to start in the morning.

I've seen several encouraging responses along with responses that correlate well with what my Onco told me about average time on Xtandi. 8-10 months
I'm personally hoping I can stay on as long as I was on Lupron and Orgovyx - 8 1/2 years. (still on Orgovyx)

Again thanks for the bump!!!!!
Posted 2/28/2022 9:41 AM (GMT -5)

Will be watching for your updates, Alephnull.

Fingers crossed, uplifting JU-JU, and positive vibes being sent your way.

When I started on ZYTIGA at the beginning of a new school year for me, as a teacher, I was thrilled when I had nine empty medication bottles lined up on my shelf - because that meant ZYTIGA had carried me through that entire school year.

Bottle by bottle --- there are now more than 75 bottles on that shelf.

So --- keep that candle of HOPE lit --- and here's to XTANDI --- and its potential impact for your case.

There's "LIGHTNING IN THOSE BOTTLES" --- helping you to give those renegade cells a powerful JOLT & ZAP!

Keep us updated - let us know how you're faring!

CYCLONE - # Iowa State University
Posted 3/1/2022 2:14 PM (GMT -5)
For those of you who have show positive results on Xtandi.
about how long after starting it did your PSA start going down?
Posted 3/2/2022 1:24 PM (GMT -5)
Mine was pretty quick from what I can remember. Will look it up and post it for you.
Michael
Posted 3/3/2022 8:12 AM (GMT -5)
My PSA dropped right away - maybe a month out. Lasted 1 year and 5 months before the side effects took me off my feet. I handled the constipation, muscle cramps, repeated gum infections, pruritis, anal bleeding, constant shingles recurrences (despite having had the 2 vaccines), bleeding sores, aggravated cough, frequent nighttime bathroom pee visits, vivid nightmares & sleep disturbances, MCI and increased fatigue well enough, but becoming unable to walk was too much. Still have an unopened bottle of that poison waiting to go to the police station drug drop-off box.
Posted 3/18/2022 8:37 AM (GMT -5)
Well, WOW!!!
My Onco had told me not to expect positive results for a few months.
(So did the PA yesterday before the results were in)
His words, not mine.

After only 2 1/2 WEEKS on Xtandi, PSA nose dived.
It went from 1.23(actually higher as I hadn't had another PSA test since 1/18 and didn't start Xtandi until 2/28) down to 0.18.
I am so relieved!! I know it's a temporary thing but I needed a boost, a huge boost and I got it yesterday 3/17.
Posted 3/18/2022 8:57 AM (GMT -5)
👍👍👍 great to hear good news!
Posted 3/18/2022 9:01 AM (GMT -5)

Tremendous news, Alephnull!

Best news of the day!

It's already W-O-R-K-I-N-G!

Great day for this great news!
CYCLONE - # Iowa State University
Posted 7/22/2022 1:41 PM (GMT -5)
We have some battle brothers, starting on XTANDI.

For them, I am sending this to the top today!

If you have experience with XTANDI, we invite you to share it here.

It's the range of collective experiences, shared by our members here, that really helps others ~ present, future, and ongoing!

Best to each & all ~

C-Y-C-L-O-N-E ~ # Iowa State University
Posted 7/29/2022 12:56 PM (GMT -5)
Wow!! I am loving this stuff!
I know it's not curative, but I just had a PSA test yesterday.
Going down slowly but surely, I'm almost undetectable, plus I at least have a new nadir if it stops going down.

From 0.04 to 0.02!!
Woo hoo!!!! Next test in a couple months, maybe I'll reach that near mythical mild stone.
Posted 7/29/2022 1:11 PM (GMT -5)
Great to hear! Down is good!

Do you have any further opinion on Regulolix side-effects? Less than Lupron?
Posted 7/29/2022 2:38 PM (GMT -5)
Fantastic. And it appears that you are avoiding some of the side effects that many of us experienced.
Michael
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