Xofigo

[Derektwright]

What is everyone experience with the treatment of Xofigo (radium 223)?

[YostConner]

I finished all six cycles. I’m glad I did, but I was one of those rare guys who had nausea, vomiting and loss of of appetite on top of fatigue. I needed to lose weight after having been on prednisone with Zytiga, but it was a rough way to do it.

[Derektwright in reply to YostConner]

Did you have all side effects the whole 6 months?

[YostConner in reply to Derektwright]

Yes, though we treated them.

[Patrick-Turner in reply to YostConner]

Hi YostConner,

So how are you now? has Pca been obliterated, dismissed, reduced, or what? how is your general health?

I am having Lu177 after so many things predictably failed since 2009. I may need Ra223.

I found Zytiga + prednisolone OK except for irregular heart rate and tendency to have dizzy spells during hot weather, and throbbing pains up spine. Side effects lasted for 3 months after I quit Zytiga and moved into Docetaxel which was found to not work after 5 shots. No more Zytiga symptoms now, after 8 months since quitting it.

Weight went lower during Zytiga but I have been cycling an average of 11,000 km per annum since 2006. I am now 71, diagnosed 2009, Gleason 9, inoperable, Psa 6. I have many bone mets. See my story at turneraudio.com.au/Patrick-...

And BTW, that's a nice bow tie.

Patrick Turner.

[YostConner in reply to Patrick-Turner]

Hi, Patrick. Thank you for the compliment. My vitals are quite good. I like to joke that cancer aside, I’m very healthy. The cancer, though, seems to be near another turning point. I have been on enzalutamide since July. Initially I had a tremendous PSA drop, going from 774 to 603 to 140 to 47. Then from November to January it dropped to 46—still a drop but also suggesting a nadir. I had bone and CT scans last week that revealed mixed results. A couple of spots disappeared, but overall there is slight progression. Three things concern me most. I had a rib that was hurting. The scans revealed new mets there. That’s not a huge surprise, actually, because my rib cage has lit up like a Christmas for a while. The second is my right femur. For a long time I’ve had increased uptake at the top of the femur, but now the uptake extends downward to the center of the femur. The third is a suspicious lymph node in my chest. I have not had lymphatic disease so far.

When I started enzalutamide, it knocked me on my ass. My QOL fell a lot, so we cut the dose in half. My energy went up a little, and the PSA results above suggested that was a good move. With the new pain and those scan results, though, I sought and got permission to go back to the full dose.

I will see my MO next week. It may be that being back on the full enzalutamide dose will extend its effectiveness, or it may be that its time to change therapies again. My most likely next step is chemo, though there are some trials I want to discuss with him if he says it’s time to change. I’m also expecting him to want to biopsy that lymph node. I’ve been dealing with this for nearly 12 years now. I get tired of the fight now and then, but I’m still up for it.

So that’s my current story, Patrick. It may be longer than you expected. LOL. I read your story. I’m impressed by the biking. I used to enjoy (much more casual) biking, but I gave it up about 1.5 years ago as my bones just got too brittle. My best to you for success against the beast.

Yost.

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

Oh that's a bow tie?.... I always thought it was a butterfly.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/18/2019 5:07 PM EST

[Hirsch in reply to Patrick-Turner]

You are a prolific writer