Radium 223 disaster

[Zetabow]

Feb my PSA started to rise (it was 0.028 most of last Summer) the RO said it's normal for PSA to rise during this treatment so didn't worry, they were happy with my blood counts and said things seem to going well, July my PSA got to 75 and started to become concerned, the pain in my legs started to increase, with trip to ER when my leg became very swollen, I kept asking about my PSA and asking if this number was normal, last week my left knee became painful and swollen and they decided to do a scan the PSA was 111. Friday the RO called me with my PET scan and Thusdays blood results, the PSA jumped to 140 and it seems this Radium has done nothing for the last 8 months, scan showing a lot of progression, they've stopped the Radium treatment and made an appointment with MO.

I'm not feeling very optimistic right now, this cancer is turning out to be an aggressive little bastard. I'm guessing I'll be back on Chemo again, looking forward to that like a hole in the head

[Tall_Allen]

Have you had any tumor biopsies?

[Zetabow in reply to Tall_Allen]

Only on prostrate at diagnosis Dec 2018

[Tall_Allen in reply to Zetabow]

It may be worth having one of your newer metastases examined. It may show vulnerability to PARP inhibitors, carboplatin, Keytruda, or some novel medicine in clinical trials. Good idea to get histology, IHC (especially AR, PSMA, CGA, SYP, MSH2 and MSH6) and genomics if there is enough tissue.

[cesces in reply to Tall_Allen]

Tall Allen,

What are some of the reasons why Radium 223 would not be working?

[Tall_Allen in reply to cesces]

Too much/too aggressive.

[Hidden in reply to Zetabow]

If you can ? Find out as T_A suggests.? Target the treatment. You’re on the rollercoaster but the next step could be the majic one. Please keep swinging.? Yah! It’s one tuff Bastard. But so are you . I Want you around.You’ve been thru this hell . “” When you’re going through hell? Don’t stop!” Winston Churchill...

[p3d1]

Hi Zetabow, Can I ask how many infusions you had? I thought that Radium 223 had a maximum of 6 cycles every 4 weeks so if you started in February you should have been finished in July. I also would have thought that a bone scan would be appropriate after 3 infusions ( half way through treatment) to check if it was working. A rising PSA should have been a red flag which prompted that scan.

[Zetabow in reply to p3d1]

In Feb they tried a different Radiation treatment which failed (can't remember the name Lord of the Rings sounding "Sillurim") and then started the Radium 223 in April, because of very low blood counts the second wasn't until June, 3rd in July and 4th infusion was 6th Aug, nearly every time I had issues getting blood counts to settle. So I should have had two more.

Tall Alan I get the impression they have done more detailed tests (maybe when they took my balls last Nov lol). Last Summer I asked my MO about an ADT holiday (the hot flushes were brutal and frequent), my PSA had remained at 0.028 since I completed Chemo, he told me it would be a very bad idea as my cancer is a particularly aggressive cancer and if my PSA started climbing they couldn't guarantee they could get it back under control again.

Another reason I'm not feeling very confident at the moment. They did a PET scan in April, it showed around 17 new spots in spine, hips, shoulder and legs, I had a LOT lesions to start with.

[Hidden in reply to Zetabow]

“Took my balls”? However, there is No testing done on those lost puppy dogs.? I did an orch 9–17 myself. Like me, you will do what you must to stay with your loved ones. Lots of praying is all that I can do in times like these. God be with you in this fight for survival ! 🙏☝️

[Zetabow in reply to Hidden]

Amazingly I still have a sex life. It's the pain that makes sex difficult, if I can get comfortable I can do the deed. lol Feels like a miricle or my Wife is just so hot lol

[Hidden in reply to Zetabow]

All my wife needs to do is touch me also. She is beautiful.. but so many aches and my crazy urology along with nightsweats don’t promise romance. I have nightwood each night. 3 years ago we had sex for he first time since dx. She was mortified because I couldn’t come and my unit shrank in half . Se la ve Brother. In this respect you are much luckier than most . Now all you have to do is stuff the APC back into its place. Unseen and unheard is how we want it to be . Take care . Scott

[tom67inMA]

Well that really sucks, but thank you for keeping us all up to date. I was hopeful for you when you said you were able to reduce your pain medication.

I can relate to doctors not doing scans while cancer is progressing. I was complaining of painful urination for months and only got scanned when I went to the ER.

Have you considered a clinical trial? At the very least, if you do chemo again will it be a different chemo? If there's a treatment that hasn't been tried, there's always hope that it will produce a great response where other treatments have failed.

Also, please feel free to write more about how you're doing emotionally. These battles we fight are as much mental as they are physical, but most posts here are about testing and treatments.

[Zetabow in reply to tom67inMA]

I was a little optimistic when I was able to reduce the pain meds, daily dose 240mg of Oxycontin just makes you want to sleep all the time. plus the pregabalin and Metadon, my piss stinks something foul, so god knows what it's doing to my organs.

[j-o-h-n]

Hopefully the pain in your leg and knee are gone.... Now they've got to get you something "that works" otherwise piss on them..... and remember to retire from the US Olympic Hurdling track and field event..... But keep winning.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 08/31/2020 5:34 PM DST

[monte1111]

I'm with you. If it has to be chemo, I guess it has to be chemo. Praying they find something to stop the progression.

[Hidden in reply to monte1111]

🙏🏼

[Zetabow]

I went to hospital today to talk with RO and do some X-rays on Spine, hips and knees, although I have progression in these areas everything looks okay in regards to no fractures spotted. They're waiting for blood counts to settle and hopefully start me on Abiraterone in a few weeks.

[Hidden in reply to Zetabow]

Wow, hang in there Zeta ! 🙏🏼

[Zetabow]

I saw Oncologist Friday, my PSA is up to 300 now. He started me on Zytiga, the first two days my pain levels went through the roof, I'm just starting to come back to normal pain levels. I'm assuming it was the Zytiga. I felt very sick this morning after taking the pills and took an anti sickness tablet which helped.

MO said it will be a couple of months before they can tell if the Zytiga is working, keeping my fingers crossed.

I had a big shock this week, my best friend of 40 years had a Stroke on Tuesday and has been in a coma, this morning he's able to breath on his own and his vitals are good, just have to wait for him to wake up and hope not too much damage has been done. He's been a great support through my illness and called me frequently, he lives in Miami now and me in Tallinn, seems a far cry from our London days.