Radium 223 offered: Hi everyone... - Advanced Prostate...

Advanced Prostate Cancer

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Radium 223 offered

16starsky profile image
28 Replies

Hi everyone

Husband diagnosed nearly 51/2 years ago. Stage 4 with mets to spine and hip (4 in total) none to organs etc.

Had Chemo five years ago ,Zytiga +Pred for 2 1/2 years (now failing ) as PSA is up to 37.

We are in UK as some of you know, and Clint has been offered Radium 223 for his bone mets.

Will not be offered RT on NHS, unless in bad pain.

What can we expect, as I have read that Radium 223, does not take PSA down.If this treatment 'kills the Cancer cells' then I don't understand why PSA dosn't fall ?

Could be offered more chemo, after Radium. So is Radium 223 worth having ?Will it make a difference,

I look forward to your knowledgeable replies.

Kim

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16starsky
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28 Replies
Leps profile image
Leps

For me, Radium 223 was six months of feeling pretty good between chemo treatments. Interestingly, my MO at the time didn't think the treatment worked well for me apparently because my PSA didn't decrease, but my RO was enthusiastic about the results. By the way, no significant side effects for me. Good luck with whatever you guys decide to do.

Tall_Allen profile image
Tall_Allen

Consider Ra223 cocktails:

prostatecancer.news/2021/02...

maley2711 profile image
maley2711 in reply toTall_Allen

" NaF18 PET predicts Xofigo success (see this link). NaF18 PET is twice as sensitive for finding bone metastases compared to PSMA PET indicators (see this link). "

Th e latter link.........

jnm.snmjournals.org/content...

These different tracers OFTEN detect different sites is one of the results? PSMA PET has become more the standard as, while not superior for bone metastasis(indeed inferior), superior for non-bone detection? So, PSMA PET is a compromise?

dhccpa profile image
dhccpa in reply tomaley2711

Great question!

FMOH_N profile image
FMOH_N

I am not sure about this? if it is available?

christie.nhs.uk/about-us/ne...

9Dexter6 profile image
9Dexter6 in reply toFMOH_N

Thanks, we are waiting for results of a gene test, that might enable us to get some other treatments if Clint has a gene mutation.

oilcan4 profile image
oilcan4

My husband had stage 4 prostrate cancer with bone mets. He told zytiga and the standing plus prednisone and had chemo. His PSA, which was never very high, would never go down significantly and his blood work was suffering. When chemo wasn't working he had Radium 223 . He only had 2 infusions and his platelets kept getting lower until thy were too low to continue. He passed away because he was not producing anymore platelets . The transfusions were not lasting. They believe the cancer had infiltrated his bone marrow.

rhenrick profile image
rhenrick in reply tooilcan4

Please see my post to read of my husband's experience. He has a wheel chair now.

Mcrpca profile image
Mcrpca

My husband had Radium 223. His PSA increased, according to the doctor, because the lysed cells released PSA into the blood stream. He had no side effects. The treatments were short. Ten minutes to start an IV & inject the Zofigo. Unfortunately it was determined after 3 treatments, that it wasn’t effective so he is now getting Pluvicto. The Zofigo is certainly worth a try.

tango65 profile image
tango65

Ra 223 may not affect the PSA, but it does prolong life, so it does treat the cancer.

nejm.org/doi/pdf/10.1056/NE...

Even when PSA may not be changed, I believe this therapy is considered to be useful to prolong life and help to control pain

If he is being treated with denosumab or zoledronic acid, Ra 223 could be combined with other drugs such as enzalutamide, or even chemotherapy.

I also believe the median overall survival should be longer today than when this study was done due to the new therapies which has been developed.

Ra 223 could be followed by chemo with cabizitaxel alone or associated with platinum compounds chemo, parp inhibitors, keytruda, Lu 177 PSMA alone or in combination with the new anti androgens etc..

rhenrick profile image
rhenrick

My husband finished 5 rounds of Radium223 in June 2023. He did not do 6th one as he was too weak with the side effects.HEhas been reduced to a shadow of his former self since then. He suffered extreme fatigue, extreme gastro intestinal discomfort to the point where he could not eat and completely lost his appetite. He could only lie on the sofa. This went on for months. He dwindled away 40 pounds. Then the gastro problem went but the energy and appetite did not return. He can manage to shower on a chair himself and dress but that is all.Amost everything has to be brought to him. He is dependent on me now for most things. His psa rocketed. He has been rushed to hospital 3 times now for emergency blood transfusions hgb levels last week were 4.3. His potassium levels are also low. The cancer has got to his bone marrow. He has a wheelchair. He was part of a trial here in Hong Kong to compare the greater effectiveness of R223 to Enzalutimide. I have written this for others. I do not want anyone else to go through this. We did our research and we questioned doctors on the trial. Everything has a risk we were told but they never mention this scenario. His friend who also did the trial is in a worst state than my husband . I would never recommend R223.

9Dexter6 profile image
9Dexter6 in reply torhenrick

Thank you for your honest opinion, so very sorry that it made your husband worse.

rhenrick profile image
rhenrick in reply to9Dexter6

Thank you for your kind words.

oilcan4 profile image
oilcan4 in reply torhenrick

Iam so sorry R22 affected your husband so terribly. We were told it might affect my husbands blood work, but after he received the infusions it would return to normal in a few months. After just 2 infusions he to lost weight and felt terrible and looked terrible so much so that they decided not to give him the other 4; and his bloodwork never bounced back. He passed 3 months after his 2nd infusion. Iam glad you posted. People need to be aware so they can question. Blessings to you and your husband.

rhenrick profile image
rhenrick in reply tooilcan4

So sorry for your loss.

Docker53 profile image
Docker53

Good Morning, My husband had Chemo as well over 1 1/2 yrs ago. It brought his PSA down from 48 to 23. He had only 3 months vacation from treatment with the exception of Eligard until PSA started going up. Oncologist recommended Radium 223 and he finished 6 rounds last September. While on Radium 223 PSA can even go up a bit, however eventually it starts to go down, slowly or it remains stable, which is the goal. My husband's cancer has been stable for over 3 months now. PSA is still at 21, however Oncologist is very pleased. As for side effects having Radium 223, there really were none. A piece of cake compared to the side effects with chemo. It is an injection monthly and you are in the clinic for less than 20 minutes. I say go for it and stay strong my friend. I know what your going through and all the other spouses on this forum.

IMO it’s worth it for QOL.

My husband is now paralyzed from chest down and confined to a bed because of compression fracture of T7 vertebra. If Radium 223 keeps bone metastases under control, you bet it’s worth it

9Dexter6 profile image
9Dexter6 in reply to

Thankyou!

rhenrick profile image
rhenrick in reply to

The important word in your post for me is "if" in reference to keeping bone mets under control. More studies are needed on R223 before I would encourage men to "Go for it".

in reply torhenrick

ncbi.nlm.nih.gov/pmc/articl....

11redtomato_41 profile image
11redtomato_41

I don't know How I could have done differently for my husband still do not know. Carol, I think, you have done well so far that chemo first then everything has followed. The long story short, I feel, could have had him leave alone as God intended living his life as natural as possible. In spite of everything possibly done, his PSA climbing up to 3000 and blood counts fall, and liver failing so quickly. Finally, while in 4th Xofigo treatment, blood transfusion needed and ceased his life was 04/26/2023. We enjoyed togetherness while he was under treatments.

And I am immensely thankful for this HealthUnlock for sharing all with their best for me.

I agree that radiation makes lymphedema.

May God be with you and your husband.

16starsky profile image
16starsky in reply to11redtomato_41

Thankyou so much. So sorry that it didn't help your Husband. So very sad. God bless you too.

TheWizardofWesley profile image
TheWizardofWesley

Hey Kim, I jist had my second Ra223 injection and my PSA went from 148.xxx to 99.237 in about 5 weeks.. so Yes I believe that your husband will see some results.. According to my MO if I keep goong in the same direction, he feels that my life expectancy should increase as well. I'm fighting this beast since 2010, going on 14 years, since surgery and Salvage radiation.. So keep the faith and keep up the good fight..Stay blessed. Larry

16starsky profile image
16starsky in reply toTheWizardofWesley

Thanks, encouraging news, just hope it works for my Hubbie !

TheWizardofWesley profile image
TheWizardofWesley in reply to16starsky

Wishing him the best ...Only good going forward

Jojoberries profile image
Jojoberries

hi there, we too are in the UK, we live in wales. My husband was diagnosed 7 yrs ago, mets to hips on diagnosis. He’s had Taxotere, Zytiga, Jevtana. Had all sessions of radium 223 in 2022. No side affects. Was good for about 7 months after, very little pain and we were still able to hike etc, Has had severe pain to legs past 6 months, crushing to vertebrae’s. Still no soft tissue or organs being affected. Genetics have showed PTEN loss. He had a catheter fitted a week ago as couldn’t go and has 5 radiotherapy zaps to spine for pain. Came home yesterday, and I cannot believe the difference, no pain, and is walking with no issues. I’d previously mentioned to his consultant about redoing chemo as read in here that doing one type could ‘recharge’ another ( sorry to be vague, I can’t remember which/what, the wonderful, knowledgable people here will know, and will tell you!) anyway, after mentioning that a year ago, they have now decided that they can redo a previous chemo. He’s happy to try anything, as am I. He’s 56 . Hope this helps. Wishing you all the best. Jo x

16starsky profile image
16starsky in reply toJojoberries

Thankyou Jo , I keep pushing for RT to Clints spine, but says until he is in significant pain, it wont be offered. Yes I have also asked about doing Chemo l again ( which they havnt said no to )

I am also happy to try most things. xx

j-o-h-n profile image
j-o-h-n

Good Luck, Good Health and Good Humor.

j-o-h-n

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