Oscillating PSA

[Magnus1964]

I am on a drug trial with xtandi plus a mystery drug. I am coming to the end because my PSA is rising. However, it seems to be rising in a zig zag pattern. It's going up two points and down one, or up four points and down two. Has anyone experienced this?

[NPfisherman]

Mystery drug?? Are you in a trial??

[Magnus1964 in reply to NPfisherman]

Yes, it's a trial to see if the mystery drug will extend the effectiveness of xtandi.

[NPfisherman in reply to Magnus1964]

The question becomes are you getting the drug--Xtandi plus the drug or in the control group--getting Xtandi +placebo...??

[Magnus1964 in reply to NPfisherman]

The xtandi is the real thing the mystery drug is the question. However, I. Do think I am receiving the real drug and not a placebo.

[NPfisherman in reply to Magnus1964]

Is this the drug from Lilly? LY3023414??

My advice would be that when you go off trial due to failure, get some indomethacin and see if that helps your Xtandi...Gusgold did that and was able to enhance/improve his results....

You have been battling this since 1992....I salute your courage and determination...27 years...gives newbies like me some hope...

Good luck,

Fish

[Magnus1964 in reply to NPfisherman]

Yes, that is the drug from Lilly. Thanks for the info on indomethacin. I tried looking this up on Amazon and other sites, no luck. Is this a prescription drug only?

[NPfisherman in reply to Magnus1964]

Yes--prescription....I guess I am unclear on why you believe you are getting the drug and not placebo....Is your overall trend from the beginning down or up since beginning??...

[GeorgeGlass in reply to NPfisherman]

I think Indomethacin was the item that helps in a study I posted about yesterday but Fisetin (which I take daily) was even more effective. I only take one pill a day. Wondering if I need to increase it to 2-4 pills per day.

[NPfisherman in reply to Magnus1964]

Apologies....read your reply to another poster....if they do not think it is drug failure, then continue by all means...Why are you sure you are getting drug and not placebo?? What is the overall trend?? Down from the beginning or up??

[tango65 in reply to NPfisherman]

Where is the trial?

[Magnus1964 in reply to tango65]

The trial is by Eli Lilly. I am in Pennsylvania.

[pjoshea13 in reply to Magnus1964]

Urological Associates of Lancaster or

Univ of Pittsburgh Cancer Inst. (UPCI)?

clinicaltrials.gov/ct2/show... ...?

lillyoncologypipeline.com/m...

-Patrick

[Magnus1964 in reply to pjoshea13]

Lancaster Urology

[erjlg3 in reply to Magnus1964]

Elgie use to be with Lancaster Urology Dr. Altadonna.

[BrianF505 in reply to tango65]

Looks like one at UC Davis in CA. studypages.com/s/a-study-of...

[cesanon]

Does your Doc think this is good or bad?

[Magnus1964 in reply to cesanon]

He does not know what to think,but in some way the drugs are still working.

[larry_dammit in reply to Magnus1964]

Good luck with the monster, been on Xtandi for 2 years. Will be interesting to hear what drug you are on when done

[j-o-h-n]

Mine has gone up then down and up then down....but not on a mystery drug... just a mystery life..

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/20/2019 9:29 AM EST

[monte1111]

On Xtandi for 18 months. Last 7 months a steady 0.2 Checked on your postings when I seen 27 years. Amazing. Keep on truckin'. I am going to try some of your OTC drugs for neuropathy. 3 300mg Gabapentin doesn't seem to do much. Will try the leg cramp 1st cause occasionally get severe cramp in calf of right leg.

[Magnus1964 in reply to monte1111]

The supplements and prescription drugs I take in the early evening. They allow me to get a good nights sleep.

[Magnus1964]

My Uro is in the pavilion (campus). I do go to the Pca meetings at Barshinger.

[erjlg3 in reply to Magnus1964]

Didn't know they had meetings. Elgie goes for his injections and doctor on Friday. You don't see a medical oncologist magnus?

[Magnus1964 in reply to erjlg3]

The meetings are held on the 2nd flood of Barshinger Cancer Center on the 2nd Tuesday of the month, 6:30pm.

[erjlg3 in reply to Magnus1964]

Thanks a bunch!

[Magnus1964 in reply to erjlg3]

Oops, the support group meets at 6:00pm not 6:30. There is a lot of great information with doctors, and other specialists. Hope to see you there.

[erjlg3 in reply to Magnus1964]

Thanks Magnus! I told my husband. He sounded like he wants to come some time We can't leave the house together at this time due to geriatric sick furry family. Would be great to meet you. Maybe they'll get better soon

Thanks for the update.

🌼Jackie

[Magnus1964 in reply to erjlg3]

Hope to see you soon.

[Stegosaurus37]

For leg cramp: you may be low in potassium. Try a banana a day; works for me. If you do get a cramp, stand up and put all your weight on that leg. That will cure the cramp.

[Magnus1964]

I do eat a banana every day. I get those cramps in the front of my thigh. I just take some of the Leg Cramp from Highland. It's OTC and won't hurt you.

[BrianF505]

For those taking the indomethiacin, what doses are you taking. Been on Xtandi for 5 years. Last PSA (this week) was 0.10. Slightly up from September PSA of O.06. As a side note, PSA seems to bump a bit this time of year then drops a bit by summer. Plus it was taken at 10 am, vs normal time of 3-4 pm. It may all be nothing or something. Might just be my slight paranoia. 😳

After all, who wants to see their psa go up?

Happy Friday everyone!