Log in
Advanced Prostate Cancer
7,712 members7,966 posts

Experience with Xtandi

Hello All, your comments and shared experiences are most valuable for those entering the world of the "Beast" and those "Pros" who have endure a lengthy journey thus far and are still with us. Am 80 and dx'd 16 years ago. Have done the ususal regimen: radiation, seeds, casodex, etc. Been on Lupron and Xgeva ( for bone mets) for 6 years and got 5years out of Zytiga and now on Xtandi 2 mos ago and PSA has been stuck at 15-16. If no drop at next lab test, my Onco will start something else. Have not done chemo and c/t scans have been clear. Anyone have experience with Xtandi and if so, results. What therapy after Xtandi has anyone tried.

Many thanks to all and wish all the best in fighting the Beast--be positive!

Lunbo

22 Replies
oldestnewest

My first comment is that stable is good, second I will say what else will he do , perhaps chemo, how is your overall health at 80? I myself would prefer to stay on xtandi, sometimes it tales a while to see a drop, and as long as it is not progressing why not, Just my thoughts.

Dan

Reply

He had to lower the dose because of the side effects unfortunately his PS increased from 4.1 to 6.44 in one month 😕

Reply

I saw your Post, I am not sure of the interaction with Tumeric and xtandi,or if it is a result of the lower dose, at any rate I would do as the Doc said and stop the tumeric for a month and see if that helps, , I wish you the best

Dan

Reply

He stopped tumeric when he started Xtandi.

I think it’s the lower dose or more metastasis

Reply

It is hard to tell with just one psa, what is going on< i am sure others will respond to your post

1 like
Reply

I year on xtandi and psa 0.008 the lowest after 12 years fatigue only side effect

2 likes
Reply

Sounds like you've hit a home run!

Congrats.

Reply

Good Morning Lunbo,

I have been in this battle for 5+ years since DX with Stage 4, many lymph node mets. No radiation or surgery at diagnosis, so have used all available drugs. Got 1+ years from Zytiga but then only 1 year from Xtandi will little impact on PSA. Many have a cross resistance to whichever of these 2 drugs you use second.

For me, it was proton beam radiation after Xtandi and now chemo, as PCa has metastasized into liver.

Everyone is different, so Xtandi could take hold for you. Have you had a Guardant360 liquid biopsy to get a better handle on what is going on with your cancer?

One of my Med Oncs has a reduced Docetaxel chemo dose that he gives every 2 weeks rather than 3 weeks for older patients.

Best wishes. Never Give In.

Reply

Started Xtandi August 15. Fatigue has gradually increased. Now, have extreme fatigue. Fatigue was already pretty bad as a result of hormone therapy (Eligard) and pain killers (hydromorphone and fentanyl patch). Thinking of asking if I can reduce the dose of Xtandi below he four capsules a day I am currently taking to try to improve quality-of-life. Quality of life is way down. To make matters worse, about a week ago I came down with bronchitis. Diagnosed 18 years ago at age 55. A summary of my many treatments since diagnosis is in my profile.

Reply

Hi Chascri--sorry to hear about the extreme fatigue which I also experience--have to drag my butt to the gym to get exercise but feel better when finished. Did Xtandi reduce your PSA?

When started Xtandi it wasted me so ONC added back Prednisone and it made significant difference--all bad symptoms gone except fatigue which also lessened.

Good luck!

Reply

I am on prednisone 10 mg twice a day. When I first started the prednisone it helped the fatigue, but not since I started the Xtandi. So far my PSA has gone down each month.

Reply

PSA down from 5.35 to 1.65. Testosterone down to 3.

Reply

Hi Lunbo,

I've been on Xtandi (after Zytiga) but the only thing it did was to make me extremely sleepy. It did not stop my psa going up. After that I have been on Jevtana (cabazitaxel) a new chemo which has stopped my psa grow and I even got it down with 20% after number 6 treatment. (My psa is 901 now). I have practically NO side effects from Jevtana! My hair is still rather full, I work 6 hours a day with my hot rods in my garage. I've been fighting the cancer since 2003 and have no multiple bone mets, but NO pain yet! Life can be strange. :-) Age 71.

Reply

Hello Bocuracao,

Many thanks for your message. How long were you on Xtandi or are still with the addition of Jevtana? Great that your doing well. The Beast is a very interesting creature.. Best you!!

Reply

Been on Xtandi and Lupron for almost 4 years. PSA went to non-detectable quickly (had Mets in lymph nodes) and has stayed that way. Fatigue the most significant side effect from combination of both.

Reply

If you PSA is stable even at 15 or 16 I don't see why your doctor would take you off xtandi? Stable is good and 16 is not through the roof. I think I would put your doctor's feet to the fire on this one.

2 likes
Reply

XTANDI worked the best for me, over 2 years, no side effects, then stopped working. Switched off to ZYTIGA which didn't really work, so quit after 4 months. Then PROVENGE immunotherapy which I just finished last month October 2017.

Reply

Hi All.

I am totally thrilled when I read of the good results many are having with Xtandi. I may be on it before long. However, I can't help but wonder about the cost. The best price I've come across is about $5000/mo from a Canadian firm. It's over twice that here in the States. Are you getting any help from Medicare or other insurance?

Reply

I was on Zytiga for 5 years and now on Xtandi and both are $5000/mo and I paid $40 for a 3 month supply and now pay nothing for Xtandi. I have Medicare, AARP and my former company's retiree medical for script coverage through Express/Accredo which costs me about $250/mo.

Reply

I was diagnosed at age 65 in Nov 2013 with a PSA over 5,000. On ADT my PSA nadir was 1.0. After various other things, in late Nov 2016 I added Xtandi with a PSA that had risen to 95.0. My next PSA nadir was 1.2 around 6 months later. During month 12 on Xtandi my PSA recently rose from 1.4 to 1.7. I am covered by Medicare and a secondary insurance which is a nation-wide government retirees version of Blue Cross Blue Shield, for both of which I pay premiums for myself and spouse. Xtandi is on the Formulary. Prior Approval was required. A specific Specialty Pharmacy was required. Insurance is charged somewhere around $9,245 per month for a 30 day supply. My copay is $35 per month. They ship directly to my home via UPS.

Background fatigue is my most significant side effect, besides the hot flashes, after 4 years on ADT. I will be 69 years old this summer.

I am in no big hurry to abandon Xtandi early, barring any significant symptoms, changes to scans, etc. If things stay relative "stable", I'm likely to ride this train a while longer, taking everything into account, and not just PSA numbers.

Charles

Reply

Charles,

Thanks for the positive info on Xtandi. We'll keep truckin with same despite side effects--part of the regimen!

George

Reply

Hi Lunbo

I am Roland and I am going to check up again. My highest PSA is 19.31 on 10 Dec 17 so as Alan pointed out I am not on the bony mets yet, I hope current treatment will get me stabilise at this figure. Bye for now.

Reply

You may also like...