MO wants to switch me to Xtandi---I Need advice

[JD-guy]

Hello, My MO wants me to switch to Xtandi, You can see my history in my profile. found PC and bone mets Feb 2021, Cleason 4+5 (9) I have been on Lupron and Casodex since. I did 6 chemo treatments the last one on Dec 9, 2021. PSA started at 82.2 now down to .060 as of this week.

My MO wants to put me on Xtandi instead of Casodex. He said the biggest SE is fatigue. Is this a good move? He said that I have responded well to treatments and he would like to get my PSA down to .01 or lower.

I thought I could maybe stay on Casodex until it quit working, but maybe that is not a good idea. My PSA continues to drop every time, I get it check. this past time it dropped from .30 down to .06.

Another question I have is would it be wise for me to consider orchiectomy?

So many questions and decisions thru this marathon.

any advice you have for me--I would be most grateful. if I generated more questions let me know.

thanks

Sincerely

Keith

[Fightinghard]

Yes. The xtandi should keep the cancer slowed down for awhile. Side effects ate managable mostly fatigue. Keep exercising as much as you can

Good luck

[Magnus1964]

Go with your instincts. Stay on casodex and milk it for all it's worth. Save zytiga and xtandi and other ADT drugs in your arsenal of weapons when casodex fails. Your PSA is low. Unless you have any bone or other symptoms, stay the course.

[Tall_Allen]

Congratulations on that spectacular response to Chemo! Chemo drives the PCa cells it doesn't kill into a dormant state. While dormant, it is pretty much invulnerable to further medicine beyond androgen deprivation. The problem with sustained use of Casodex, is the androgen receptor soon learns to feed on it. Less so with Xtandi. I don't think that any anti-androgens will be of much use to you until those cells wake up.

But I think you might instead open up a discussion about Zytiga. It's not an antiandrogen. Like Lupron, Zytiga depletes the last remaining testosterone that is manufactured by the adrenals. It may be especially useful if you decide to have an orchiectomy.

[JD-guy in reply to Tall_Allen]

Thanks. One thing I am going to do, is ask him to lay out what he thinks is a good plan of attack to the cancer. He did that up front with the radiation and chemo, but did not do that beyond chemo.

He said I could think about and we can talk in a month when I go back for my 3 month lupron injection. I am grateful for him being willing to give me time to think and talk. Thanks for your advice.

I added a picture up with my question of my PSA since I was diagnosed.

[HopingForTheBest1 in reply to JD-guy]

Remember that you are your own best advocate. Don't be shy about asking questions and challenging your doctors. It's always a good idea to get a second opinion if you may be unsure about any recommended change in your treatment/therapy.

This forum is great, and you will more often than not get viable/useful advice. Just make sure to follow up with a doctor. Try your best to leave no stone 🪨 unturned.

[JD-guy in reply to HopingForTheBest1]

Yes, this forum has been a great help for me. I go for a lupron injection Feb 18, and he said we will talk about the switch. Thanks

[JD-guy]

You are right, I did not get a scientific answer why, not did I push for an answer. I did question him a little, but it kind of hit me sideways at first. I was not ready for the change. I am scheduled for a lupron shot the middle of February, so he did tell me that we can think about it and talk about it then. He said he is willing to watch it and as long as it stays low we do not need to change yet. I am grateful for the the ideas given here.

[2dee]

Not a doc so will/can not give any advice about treatment selection for YOU.But I can say that MY experience with Xtandi for 15mos added to my failing Lupron was very positive. Quickly drove MY PSA down below 2 till it finally failed and I dropped. Fatigue is a problem but other side effects were quite manageable.

Follow SOC recommendations from your MO.

2Dee

[dhccpa in reply to 2dee]

Why not Zytiga instead of Xtandi? And how long did Xtandi work?

[2dee in reply to dhccpa]

I didn't want the prednisone kicker.Xtandi lasted 15mos

2Dee

[dhccpa in reply to 2dee]

Thanks

[spw1]

While I cannot say whether you should or should not do a switch to Xtandi, I can tell you my husband's experience on it. He needed to take Zytiga or Xtandi and the MO preferred the latter as in his experience it was quicker acting. I was worried about fatigue as my husband continues to work. The SE seemed scary on other people. Touch wood, our experience is that Xtandi worked quickly to begin to control the rising PSA and seems to be working at the last blood test. I seem to need more sleep than my husband so perhaps his exercise regime and diet (whole foods plant based) may be helping with the SE. He was told to taper the dose in, starting with a small dose.

[larry_dammit]

Stage 4 8/16. 6 rounds of chemo. My oncologist put me on Xtandi at the end of the chemo with a bone shot and adt shot every 28 days. That’s 61 months and PSA is still at 0.05. Just saying. 🙏🙏🙏

[JD-guy in reply to larry_dammit]

Do you have any side effects? If you have fatigue, how much or what can you and can you not do? I know we are all different, and respond differently. Thanks. Keith

[larry_dammit]

Yes Fatigue, hot flashes, muscle loss and man boobs as well. Just a few. Not all Xtandi. If you read the label on Xtandi they pretty much cover the side effects. Now that said, Xtandi keeps a group of pharmacists available for you to call with questions or concerns. My only caution on it is that Xtandi does not play well with a lot of other drugs ,especially pain meds so be careful what your doctor wants you to take . Good luck warrior 🙏

[HopingForTheBest1]

Fatigue side effect from Xtandi is easy to control. Just take it before bedtime and it could very well help you sleep better. It does for me.

[MateoBeach]

You are getting very good treatment for de novo metastatic PC. The proven regimen is ADT plus docetaxel chemo plus enzalutamide right out of the gate, the PEACE-1 protocol. Casodex instead of Xtandi might not be as effective, so why not try the switch and see how it works. If fatigue is too bad you could ask for Nubequa instead.

[MateoBeach in reply to MateoBeach]

Also happy to see that you are started on Xgeva early. Consider, discuss adding Celebrex with it.

[dhccpa]

Xtandi is very expensive compared to generic Zytiga. Why not Zytiga?

[j-o-h-n]

Greetings JD-guy, Here's the deal Keith...... you give us your data, we give you our data:

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.'

j-o-h-n Saturday 01/15/2022 6:51 PM EST

[JD-guy in reply to j-o-h-n]

It is all in my profile.

I am 62, diagnosed Feb 2021,. Stage IV, Gleason 4+5. 9. I am in PA. Going to Hillman cancer center. UPMC Camp Hill, PA campus,. Dr Felter. PSA is at the top of this question.

See my profile.

Thanks

[j-o-h-n in reply to JD-guy]

Thank you Mr. JD-guy for being such a Deere - you can stop running now. You do have a lot of data in your home page, which will come in handy from time to time. Stay well keep posting and God Bless....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/15/2022 9:06 PM EST

[Roscoaus2000]

Hi I changed to Xtandi after Casodex brought my psa down from 9000- less than 0.001 after 4 months then stopped working after 12. I thought it was fantastic. I was energised, walked 5km in 45 mins, but started having little moments of forgetfulness. After 4 months I did a walk of 5km in 42 mins then had a mild seizure. Doctors thought it was lack of water. It wasn’t. Had brain CT scan, showed nothing. Had brain MRI, nothing. Advised Oncologist and he changed me immediately to Zytiga. The warnings for Xtandi are that it can penetrate the blood brain barrier. I was 78 then. Am nearly 82 now. Psa slowly moving up , last reading 0.7.Every person is different. My neighbour couldn’t use Zytiga, it made him sick. He has been successfully on Xtandi for 4 years. Go figure!

[Rolphs]

2000, Thanks for the warning on Xtandi. I have been on for 40 days and so far SE just some fatigue. I am 64, went through Doxi, radiation for bone Mets and been on Firmigon since DX in May 21. PSA went from 900 at DX to 5.7 a week ago. PSA decline accelerated after Xtandi but not sure of causal relationship.