Starting Xtandi

Almost 2 years on Lupron and Bicaludimide and my PSA is starting to go back up. The least it has been is 1.75 a few months ago then about 2.0 last month and now less than 4. My MOC wanted me to start me on Xtandi . I have read the Xtandi information and there are some severe side effects. None of them really worry me but I do have a cancer tumor in my brain that could cause issues, but we just dont know. I understand the risk of Seizures and PRES to the brain. However others say it works pretty well. I understand it is used initially when no other ADT or Chemo Drugs work . Any words of advice or how have my brothers and sisters here have done on Xtandi.

[Tall_Allen]

Discuss Nubeqa (darolutamide) with your MO. It doesn't penetrate past the blood brain barrier so the risk of seizures is lower. You may be able to justify its use with your insurance even though it is not specifically indicated.

[Hidden in reply to Tall_Allen]

My issue is my cancer has metastasized to many other parts of my body to include my lymph nodes, bones, brain and skull. They have not tested for sure but we think it’s in my stomach for sure. Additional testing needed to confirm. darolutamide says it is used when cancer has not spread to other parts of the body.

[Tall_Allen in reply to Hidden]

That's right. It is of no benefit in the brain.

[Shooter1]

If the full 160 mg dose is killing you...cut to a lower dose.. 160 make me an invalid over 4 yrs ago.. 80 is keeping me going now... Life Is Good, don't suffer any more than necessary.

[2dee]

When Lupron started failing after about 2 years we added Xtandi. MY side effects were moderate, fatigue, brain mush, balance, etc. Drove PSA down to my lowest nadir and started failing at about 15mos so I stopped. Now on Lynparza and doing ok again for a few months.For ME Xtandi worked great while it lasted.

2Dee

[Hidden in reply to 2dee]

Great news thank you for sharing

[lcfcpolo]

Hi. Xtandi has worked well for me so far, 17 months. 4 pills a day with ADT. I started with a similar PSA to you of 1311. Last bloods were 0.03. Some lethargy and flushes which I put down to the ADT.Good luck and God bless.

Graham

[Hidden in reply to lcfcpolo]

Thank you for the input I appreciate it

[rogerandme]

I’ve been on Lupron and Xtandi for 8 months thankfully no real noticeable side effects for me…

[Hidden in reply to rogerandme]

Excellent! Thank You! 👍

[j-o-h-n]

Great people here..........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/12/2021 7:30 PM EST

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

Yes everyone is wonderful.

[Fostouk]

I used Xtandi now for 18 months, with mild side effects at the start of treatment e.g hot flushes, sweating and breast became bigger. The annoying side effects are loss of libido and erectile dysfunction (really no erection). The good news are Xtandi lowered PSA to the cut-off number of the test, also some bone and lymph nodes metastasis disappeared.

[Hidden in reply to Fostouk]

Thank you, I am used to the same side effects with Bicaludimide anyway so I am used to that LOL. Thanks for your input.

[monte1111]

4 years on Xtandi. Lupron and xgeva. 8 cycles Taxotere. Extensive bone mets. Abdominal lymph nodes resolved. Have foot neuropathy. The other usual side effects. Which medication causes which side effect is sometimes a guessing game to me. I started with a psa of 59.9 Gleason 9. It took about 2 years to get to 0.1 psa. I have stayed there for about 2 and a half years. It will be 5 years March, 2022, from official diagnosis. I am now "stable". My year and a half to 2 and a half years prognosis is in the rear view mirror. The future is uncertain. (Except for death and taxes.) Whatever you choose, I hope it works well for you.

[Hidden in reply to monte1111]

Thanks Monte, I will starting Xtandi this coming Saturday. I will keep you guys posted. Thanks again.