Cancer Doctor Recommends Xofigo (Radi... - Advanced Prostate...

Advanced Prostate Cancer

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Cancer Doctor Recommends Xofigo (Radium 223) Because PSA is Rising Again After 10 Months of ADT with Firmagon and Zytiga

diamondrn profile image
20 Replies

My PSA started rising again 2 months ago. It is now at 37.

The highest PSA was 160 when this all started about a year ago.

Testosterone is still negligible.

Recent bone scan shows some improvement in old bone metastases but a couple of new ones just popped up.

The VA oncologist is scheduling me for 2 Xofigo (Radium 223) treatments at the Levine Cancer Institute.

We will continue Firmagon, Zytiga and Prednisone for now.

I did quite a bit of research on the subject and Radium 223 seems to be the right therapy "to treat prostate cancer that no longer responds to hormonal... treatment."

Does anyone in this group feel like sharing their experience with Xofigo?

Thanks.

.

P.S. The TURP results are incredible. After a little more than a month, I can sleep 4 or 5 hours before I have to urinate; instead of having to get up 4 or 5 times a night.

I am wearing men's regular underwear; no absorbent pads are required for leakage, etc.

I do not miss the Foley catheter that was my constant companion for over a year.

I am feeling good. Very little pain.

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diamondrn
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20 Replies
Magnus1964 profile image
Magnus1964

Xofigo sounded scary to me till I was running out of options. It was not a bad experience for me and worked wonders for my bone pain. Don't let it scare you.

diamondrn profile image
diamondrn in reply toMagnus1964

How are you doing now, Magnus1964?

You said that you were "running out of options."

Magnus1964 profile image
Magnus1964 in reply todiamondrn

I have been off all treatments since January. My PSA is bouncing around with no clear pattern yet. I hope a can hold out till spring. My research doctor would like to put me on PSMA. I may have to finally go on chemotherapy before qualifying for PSMA.

diamondrn profile image
diamondrn in reply toMagnus1964

I can't figure out what is going on with me.

My Testosterone is almost zero but my PSA is rising at a rapid pace.

If this keeps up, my Oncologist, who has a great head of hair, may wind up being as bald as I am.

Magnus1964 profile image
Magnus1964 in reply todiamondrn

Xofigo may do the trick on bone mets. If you're having problems with soft tissue you might try Provenge. I did the six week treatment for Provenge and it worked very well.

You have not mentioned zytiga or xtandi? Are these still a possibility for you?

diamondrn profile image
diamondrn in reply toMagnus1964

I am currently taking Firmagon, Zytiga and Prednisone.

The oncologist is thinking about switching Xtandi for Zytiga.

I had great numbers 2 months ago. Since then there has been a rapid deterioration.

It is hard to tell what is working and what isn't, Magnus

Go Radium 223! Feeling good Is pretty great. Good luck ! 👍

Tall_Allen profile image
Tall_Allen

Xofigo is usually 6 injections, 4 weeks apart. There have been several interesting trials of Xofigo combined with other treatments that you may wish to discuss with your oncologist:

prostatecancer.news/2021/02...

diamondrn profile image
diamondrn in reply toTall_Allen

Thanks, Tall_Allen.

For whatever reason, I think my MO, who is at the top of his game and his field, wants to try 2 injections and then see whether or not to go ahead.

GP24 profile image
GP24

The treatment will fight bone mets but the PSA value will continue to rise.

tango65 profile image
tango65

Have you consider discussing chemotherapy, or Lu 177 PSMA treatments? Both therapies offer a survival advantage and treat bone and soft tissue mets. Xofigo will treat only the bone mets. If you go with xofigo you could discuss doing Provenge at the same time. Provenge a the only vaccine approved for PC, offers a survival advantage and it could be combined with xofigo.

onclive.com/view/dr-antonar...

diamondrn profile image
diamondrn

We discussed Provenge, but the Oncologist said that he has experienced way too many problems with it.

Shooter1 profile image
Shooter1 in reply todiamondrn

I have had no problems with Provenge... PSA has been dropping no for 6 mo in a row. Life Is Good, stick around and enjoy it....

Schwah profile image
Schwah in reply toShooter1

Do you believe your PSA drop is from the Provenge ??

Schwah

Shooter1 profile image
Shooter1 in reply toSchwah

I don't know. Had my two new mets zapped just be for I started Provenge. My MO thought it would be a good fit at this time... I hope he was right. The Provenge people told me I should get an extra year out of it with my low PSA.

Schwah profile image
Schwah in reply todiamondrn

Very strange he’s say that. Of allThe treatments Provenge is the least side affects. I’ve done it. One bad flu like day out of 3 infusions. Look up the side affects online. I wonder why he says that ?

Schwah

cesces profile image
cesces in reply toSchwah

How effective, generally, is provenge?

I don't hear much about these days?

Schwah profile image
Schwah in reply tocesces

Sorry I just saw this. I missed it earlier for some reason. I did a lot of research on Provenge and if you take a deeper dive into there phase 3 study some interesting things come to white. Primarily if you break down the groups into sub groups by PSA level at that time, it turns out that the lower the PSA at the start of Provenge, the more effective it is. For example they say it extends life and average of four months. However the category of men with the lowest starting PSA and that’s the earliest stage of disease, saw a life extension of over 14 months. I think there’s clearly showed that the earlier you do Provenge like almost any of these drugs, the more effective.

Schwah

diamondrn profile image
diamondrn in reply toSchwah

I asked his Internal Medicine MD assistant about it and she said, without any hesitation, that they had some bad experiences with Provenge, Schwah.

She was responding to a list of 4 things that I wanted ask the MO about during the appointment, that I had printed off earlier.

Schwah profile image
Schwah

I’d push back. Check it out. Very minor or no side affects for the vast majority. Only 1.5–% had to stop due to severe side affects. I’d get a second opinion. My own MO and the Dr at ucla who does the Provenge both told me minimal risks none of which are life changing or threatening. Compare it to other PC treatments with bad side affects. It’s also been shown to work much better the earlier you take it. I couldn’t find the downside.

provenge.com/hcp/provenge-s...

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