Xtandi update

[chascri]

Good news! Started Xtandi August 2017, PSA 5.35. PSA now .9. Initially diagnosed 1999. Summary of treatment since 1999 in profile. Hope this is helpful to those newly diagnosed or about to start Xtandi.

[Hidden]

Great news! 10 months and counting, it's doing the job.

[JamesAtlanta]

You’ve had an amazing journey, since beginning dignosed almost 20 years ago!

Congratulations on your response to Xandi! Great news! I recently started Zytiga and assume Xandi is next on the list some day in the future...

Really appreciate you sharing!

James

[vandy69]

Good Sunday Morning chascri,

Read your bio so I know that you are one tough guy. Your history gives me the inspiration to battle on. Xtandi is currently working for me as a rechallenge after recent chemo.

Thanks.

Best wishes. Never Give In.

Mark, Atlanta

[snoraste]

congrats!

[Grumpyswife]

Hi chascri, That's great news and a long, long battle. My husband was Rx in 2001 and it's difficult to remember what life was like before cancer.

Mine started Xtandi on 2/3/2018. His PSA has been slowly lowering and we hope it that continues.

[NWLiving in reply to Grumpyswife]

How is it now?

[Grumpyswife in reply to NWLiving]

He stopped on Xtandi on recommendation of his MO due to cognitive issues. Will revisit MO soon to hear other suggestions. Thx for asking!

[j-o-h-n]

Kick the cancer to the curb...

Good Luck and Good Health.

j-o-h-n Sunday 05/06/2018 5:57 PM EDT

[Johnstonearch]

I have the same time frame as you for diagnosis and I have been on Xtandi for almost 5 years now, PSA 0.12. Shouldn't Xtandi send us to Hawaii or something?

[chascri in reply to Johnstonearch]

Sounds like a great idea to me. Great to hear you have been on Xtandi 5 years. That is the longest I have heard of. Is that very common to your knowledge ?

[Johnstonearch]

My Oncologist at DUKE says he has never had anyone go that long. He smiled and called me an "Outlier" He said that the typical time until failure is 18 months. I swear after 19 years of every treatment under the sun, you can hear and feel your body tell you what is working and what is not. I had Provenge about 3 years ago and I swear my Cancer became weaker about 6 months after that protocol. In my third year my diarrhea got really terrible and quality of life suffered and I could barely leave the house. so I voluntarily cut my X dose from 4 a day to 2. Within a few days I only needed to stay home few hours in the morning, not all day. If I go on a business trip now or have to perform at work, I stop it all together for a few days to get my energy back and have more capacity. It hasn't hurt my PSA numbers at all.

Funny, now I am on three Opioids for pain and they seem to balance out the diarrhea with the OIC ( Opioid Induced Constipation) Talk about a "Crap Shoot!" Sorry, I couldn't help myself.

[chascri]

I appreciate your sharing. Sometimes I feel like I am in or entering uncharted territory. It help to know what others are experiencing.

[ctarleton]

Great news. I went on Xtandi about 18 months ago, when I had at least 10 "hot spots" still showing up on a Ga-68 PSMA PET scan. PSA was 95 to start, then down to a nadir of 1.2, and currently around 1.8. (A far cry from the PSA of 5,006 I had at original diagnosis in Nov 2013.)

Charles