First post: Hazy with Xtandi - any experience/advice?

[Walkingwell]

Advanced prostate cancer, Gleason 9, meta to spine; done bicalcutamide, Zytiga, docetaxel (stopped for severe reaction), Xtandi for 6 weeks and feeling hazy (slow, hard to concentrate). Last PSA check 0.6. Anybody share experience or advice? Much appreciated.

[whatsinaname]

"Cancer brain" is something we all have to deal with. Memory loss is arguably the worst symptom.

Exercising the mind by reading a lot, solving crossword puzzles, games, etc, etc have helped me to a large extent. Still, the deterioration in cognitive ability cannot be denied.

[Shooter1 in reply to whatsinaname]

Also my of us here can not handle full dose Xtadi. 5 mo. and I was and invalid. Cut dosage 3 time and ended up with livable dosage at 3 pills on Sunday, 2 pill every other day of the week. 86 mg average. Talk with your Drs, about excess toxicity. Plus every thing whatsinaname mentioned.

sudoku. Scrabble, etc.

[Walkingwell in reply to whatsinaname]

I will do that, thank you. My mind exercise way is writing - even this! Best wishes

[whatsinaname in reply to Walkingwell]

Hi Walkingwell,

Yes, even writing helps because one is forced to think.

All the very best to you.

[ctarleton]

Hi Walkingwell,

I've been on Xtandi full dose for the past 2 years and 3 months. My main side effect is the pervasive background fatigue, more like a continuation of the trend that had already developed after starting "Lupron of life" a little over 5 years ago. I sometimes forget the occasional word, but I might have been doing some of that already by now nearing the age of 71. When I got onto Xtandi my skin got even drier than it was on Lupron. Even my nose hair went away. I also developed a little bit of nipple tenderness and some minor breast growth (gynecomastia) after being on it for about a year. I also had enough of a decline in peak strength and endurance that after a couple of years on it I hired younger people to do heavier yardwork, to get up on ladders for outside work/repairs, etc. I still take walks, but I'm slow as dirt, and don't get in the distance I used to go. Every now and then I take a short nap in the afternoon. I also take my 4 capsules just before bed. I'm not sure how much that really helps, since the Xtandi reportedly reaches a steady state in the body between around 7-8 times a single daily dose while on continuous dosage, but I do it anyway. Added Xtandi took my PSA back down from 95 to 1.2. It's still working pretty well. Recent PSAs have been fluctuating a few tenths one way or the other, around 2.8.

Keep exercising and moving around. Try not to overeat. Share hugs and mutual support as much as you can with your caregiver/loved ones. As I've expressed before, in my experience, we may not be Cured of this disease, but we can often be Healed in many ways along the way.

Charles

[Walkingwell in reply to ctarleton]

Thank you, ctarleton. I laughed at 'slow as dirt'. That's a good expression! I'm glad to hear Xtandi has helped you for over 2 years and hope it continues, also that your PSA is down pretty low. Exercise and moving around - good reminder. Same for overeating and hugs and mutual support. From my heart I agree with what you say: we can often be Healed in many ways along the way. You have helped me.

[nobaday]

Metastasized prostate cancer found at age 56 Nov 2017. PSA 76. Tumours on spine and neck. Back surgery plus radiation. ADT + abiraterone. PSA now 0.013 ( low!) but have one tumour growing in neck. Have asked for stereotactic radiation to zap this one big tumour. CT of lower spine shows rest of spine stable which was unexpected.

I was suggested docetaxel chemo but have asked for stereotactic radiation. Anyone else had stereotactic radiation in neck?

Can Xtandi (enzalutamide) work after abiraterone ( not in Standard of Care protocol in Canada).

[Walkingwell in reply to nobaday]

I am taking Xtandi after 4 weeks of abiraterone (which did not slow PSA rise) and it works, so far. PSA went 0.51 before abiraterone, 1.17 after 4 weeks with abiraterone, then switched to Xtandi, and PSA 0.6 after 4 weeks. It's not standard protocol here in Japan, either. Btw, age 57. What radiation did you have? On the prostate tumour itself?

[nobaday in reply to Walkingwell]

I had spinal compression at T9 mid spine so had surgery nov 2017 to remove tumour (plus rods in spine) followed by 5 doses of radiation and then rehab to walk again. I can now ski, workout and play soccer and hike again!!

Now want high dose stereotactic radiation on neck tumour as too dangerous for surgery. As my PSA is very low at 0.013 I hope abiraterone + ADT Zoladex will keep it down and scans will not show progression of in other Mets.

When were u diagnosed? And PSa level at that time?

I have a friend who tried Abiraterone for 4 weeks when after ADT his PSA was rising Abiraterone did not stop PSA rising so he switched to Xtandi. His PSA went down to 0.7. 14 months later his PSA is going up again (1.4) so he is going for CT and bone scans. If PSA keeps rising docetaxel chemo could well be his next step.

[Walkingwell in reply to nobaday]

I was diagnosed fully in September 2017. PSA was 23, mets to 3 places: pelvic bone, rib and spine T7. October 2017 tried chemo (docetaxel) at the same time as bicalutamide and injection of LHRH agonist, but first course of chemo caused such a severe reaction to blood, liver etc. that doctor believed another course could be life threatening.

The cancer on my spine is the biggest area by far (except original tumour) and has caused severe or minor pain. Radiation by beam over 5 days is available treatment but at the moment pain is under control.

I really respect your coming through rehab to be so active - especially to play soccer. I've only skied once years ago and crashed into a tree (tree was fine), but was playing soccer until last November. Back pain flared up again Dec/Jan.

[Magnus1964]

I have experienced a kind of brain fog. I have been on xtandi for 3 1/2 years. It did get better as time went on. I still can't respond to the Jeopardy questions fast enough when I do know the answer.

[Walkingwell in reply to Magnus1964]

At least you know some of the answers! And 3 1/2 years - gives me some hope. Thanks

[monte1111 in reply to Magnus1964]

I quit watching jeopardy.

[Walkingwell in reply to monte1111]

Good choice!

[j-o-h-n]

Greeting Walkingwell,

I can't remember shit! Except humor. I've told this little vignette before but I must repeat it over and over or I'll eventually forget it.

I told my neighbor about my memory problems and told her about the incident when I wanted to bring up a broom from the basement. So that I wouldn't forget to bring up the broom I started singing to myself "gotta get the broom, gotta get the broom". So still singing that I went down to the basement, did something else while I was down there and all along singing "gotta get the broom, gotta get the broom". Sure enough I came up from the basement still singing "gotta get the broom, gotta get the broom" and yep I forgot to get the broom.

So my neighbor looks at me and says "well at least you didn't forget the lyrics".

Join the club...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/17/2019 2:43 PM DST

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

Gotta get the broom, gotta get the broom, yeah! It's kind of catchy. I'll be singing that. Glad to be in the club.

My best one like that is I'm walking and my wife says, where's your hat? I say: what hat? She says: You were wearing a hat! Me: I was?

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

LOL

At least you didn't ask "excuse me lady, who are you again?"

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 03/21/2019 11:45 AM PM DST

[monte1111]

Xtandi for 19 months now. Psa 0.2 for 7 months in row now. If it's working advise stick with it and work around side effects. You have a limited number of options, so don't just throw this one away. Just my opinion. (Of course psa isn't everything. This is pretty much a jig saw puzzle.)

[Walkingwell in reply to monte1111]

Thanks for your opinion, I value it. Sure, each of us is different with different conditions but it's good to know what's happening to others. Glad to hear Xtandi has been working for you for 19 months and hope it continues. I'm going to do what you say, stick with and work around. Puzzle is right, but puzzles are better than nothing. Best wishes to you, monte1111.

[monte1111 in reply to Walkingwell]

Best wishes to you also. Hope the Xtandi lasts you for a good long while. I dropped to 0.1 today. (Such a small drop could be a lab mistake. I take it as a victory as is going in right direction.) Will eventually fail, but not today. Enjoy.

[Walkingwell in reply to monte1111]

Congratulations! Yes, enjoy.

[Longterm101]

When were u Dx?

[Walkingwell]

September 2017

[Yousray]

My dad will start his xtandi tomorrow isa

He was diagnosed last year met to bone

G. S. 9

And took zoladex only but one year later the psa rises to 2 then we are starting the next line hope it works for loooong time

[Walkingwell in reply to Yousray]

I hope so, too. Good luck & best wishes

[Bebby1]

Hi

My husband Gleeson 10

Bony and extensive lymph Mets 12 months ago

Started Bicalutamide plus docetaxal

Only had two doses due to severe reaction

HD remains Ed on 3 monthly zoladex injections

PSA rose two months ago

stopped Bicalutamide

Commenced xtandi

Three days ago

Already extremely tired

Dr says it holds %70 men for 12 months

If not he will qualify for trial

?????

Sounds familiar

Hope you are ok

[Walkingwell in reply to Bebby1]

Thanks for the post. Your husband is the first other person I've heard about severe reaction to docetaxel. I've had Xtandi now 6/7 weeks. Feeling slightly better. Just do what I can, don't compare with others or before. Walk a little, meet friends, do what makes me more positive. Yeah, lots of ??????. Best wishes.

[Bebby1 in reply to Walkingwell]

Great you are coping

Enjoy what you can

All the best

[Nicnatno]

Hello Walkingwell, I was dx 40 months ago. PSA was 415 and Gleason 8. I immediately did casodex for 2 weeks and stopped to start lupron. Been on it since. I completed Taxotere in 2017 and brought PSA down to 0.1. 5 1/2 weeks ago I started Xtandi. My s/e after 48 hours was blood in urine which went away after 3 days with drinking lots of water. The fatigue had also subsided considerably. I walk for 3 miles daily which helps tremendously with the fatigue. I feel good and qualityof life is is good. I will go to xofigo as next treatment along with Xtandi. Keep pushing yourself brother.

Nick

[Walkingwell]

Thanks, Nick. Good to hear you're doing well. Me, too. Walked today for an hour. It was a while back that I was taking Xtandi. Since then I tried a few different, older, daily tablets, estrogen worked for a while. Had beam radiation for 10 days and that helped with pain. Currently re-trying Zytiga, and probably Xofigo end of this month. At the moment feeling fine, last scan showed no new cancer sites (since 2017 diagnosis), no change in 2 bone mets, slight increase in one, original tumor smaller. So I'm glad about that. Best wishes.