Your Xofigo Experience : Hi, I'm 5... - Advanced Prostate...

Advanced Prostate Cancer

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Your Xofigo Experience

BGoertzen profile image
20 Replies

Hi, I'm 56 with stage 4 prostate ca. My oncologist is recommending I try Xofigo. I'm hoping someone will share their experience with this medication. The "possible" symptoms that come with it are what I'm worried about......mostly Nausea and vomiting.

Anyone currently on Xofigo or anyone that's tried it, please share your experience. I will be so grateful!!

20 Replies
Win-Pir profile image
Win-Pir

Had this drug a couple of years ago. No side effects at all

ctarleton profile image
ctarleton

If you look-up the Full Prescribing Information for Xofigo, you can find a section that summarizes the group statistics of the various side effects and Adverse Reactions during the Clinical Studies that led to the approval of Xofigo by the US FDA.

accessdata.fda.gov/drugsatf...

I've not taken Xofigo, myself. Anecdotally, I've known two men from local prostate cancer support groups who have taken Xofigo. One already had extensive disease that was taking over his bones and marrow, and his blood counts tanked after a few treatments and would not recover fast enough, and, despite stopping the treatment and getting multiple transfusions, he died of cascading complications after a fall. The other is having no significant problems at all, but is watching his blood markers like a hawk, and still hoping for the best.

BGoertzen profile image
BGoertzen in reply to ctarleton

thanks so much for this relply

HB1966 profile image
HB1966

Hi,

two days ago I got my first XOFIGO injection. My wife accompanied me but I was able to drive home by myself. The syringe is thick with lead coated and impressive 😬 but until now I feel no side effects. I am 53 y.o. Regards Theo

BGoertzen profile image
BGoertzen in reply to HB1966

Than you, Theo!!

johngwilk profile image
johngwilk

I had my first injection two days ago. It's way too early to report definitively on side effects (none, so far). Prior to Xofigo, I've had increasingly severe bone pain, especially in my left hip. After just two days, the pain seems significantly reduced, but this could be the placebo effect.

Next blood work is on the 22nd; cycle 2 injection on the 28th. Onco doc says it can take 2-3 cycles to show PSA reduction. (Now at 1204.)

My goal for this treatment is clinical stability until the start of a pembro+ trial early next year. I'll report progress as it occurs.

Best of luck with your decision.

BGoertzen profile image
BGoertzen in reply to johngwilk

thanks so much for your reply

Mathes72 profile image
Mathes72

Just had my second xofigo injection, next in two weeks,this treatment takes 15 minutes an you are out the door..after the first no side effects,the second some gastro distress if you know what I mean,stoped one week later,psa dropped 22 points after the first infusion, any bone pain is gone,(psa 62 to 40) have not felt this good in a long time. be positive

BGoertzen profile image
BGoertzen in reply to Mathes72

Great report. Thank you!!

Jbooml profile image
Jbooml

My completely intuitive view is that it should be used only after burden of bony PC is reduced chemically or hormonally....otherwise high burden uptake will cause more problems than they solve. I’m sure this turns convention on its head but it’s the only I’d take it.

I’d like to take it now that mine are way down but the few clinging to life are most vulnerable...My onc think I’m nuts to suggest it.

If anyone knows of a RadDoc who subscribes to this notion let me know.

AlanMeyer profile image
AlanMeyer in reply to Jbooml

jbooml,

I suggest that you get some expert advice on this and not trust your intuition. I don't know how many times you can be treated with Xofigo and, if your ADT treatment is holding down the bone mets now, it might be a mistake to subject yourself to the unnecessary radiation. Have you searched Pubmed or the Bayer or FDA websites for more info about this?

Maybe your oncologist doesn't have enough knowledge and experience and his opinion is wrong, but if you think that's the case, I would go for a second opinion with the best expert you can find - but not necessarily one who you have predetermined as agreeing with your own intuition. You want someone who understands the cancer biology, not one who is only trusting his own intuition.

Best of luck.

Alan

I don't think what you are saying is out of line. What I've read is that Xofigo is often done too late when it doesn't benefit the patient. Many doctors think it should be done as soon after castrate resistance as possible. One of the problems with waiting is your chances of developing visceral mets increases with treatment time. Once that happens, they won't give it to you if the mets are above a certain size.

Jbooml profile image
Jbooml in reply to

Yes..as with everything in life, business and golf....timing is everything.

The Goldilocks principle

in reply to Jbooml

My doctor suggested I start Xofigo right after I became castrate resistant, but my PSA was doubling every 3 weeks so we went for Zytiga instead. I might be doing it next after Zytiga becomes ineffective.

Jbooml profile image
Jbooml in reply to

My guy put me on zytiga mercifully immediately with my first ADT shot..I'm very grateful for this proaction...still I'd love to carpet bomb the survivor cells with low dose xofigo...I don't think it would do much harm..being non visceral ..that only leaves the cesspool leftovers in my rotten prostate...now what to do about it...hifu?

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

Greeting BGoetzen, would you kindly let us know your location? Psa? Gleason? Treaments so far? Treatment center? Doctor's name(s)? All info is voluntary, but it helps us help you and helps us too. If you do respond please do so in a future post (not today and not to me). Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 08/03/2019 11:37 AM DST

DSEE profile image
DSEE

This is a great drug- but hemoglobin has to remain a certain level to continue through course which mine did not.

dogstar1 profile image
dogstar1

Hi. My husband had the six Xofigo shots at a time when not much else was working for him and he had several confirmed mets in his thoracic spine. The only side effects were that he said he felt "a little strange" on the ride home each time, but that was it. He was healthy enough that he had no bone marrow issues. His platelet count decreased, but not dangerously so. Being relatively healthy seems to be one key to being able to tolerate Xofigo. His PSA ended up dropping considerably and bone scans six months later showed evidence that all the mets were "resolving." Unfortunately, about four months after that, they came back. If a second round of Xofigo were approved, we'd have done that in a heartbeat. But at $30k per shot (at least that's what the bill was; who knows what the insurance company really paid), doing that on a self-pay basis was out of the question. There have been some clinical trials with a second round with decent results: targetedonc.com/news/second... and ncbi.nlm.nih.gov/pubmed/289....

Jbooml profile image
Jbooml in reply to dogstar1

Well your acknowledgment of the cancer returned after initial (xofigo) success does seem to support my intuition...it may better to employ earlier in treatment before mutagensis prays on sanctuary cracks and crevices.

If the SOB wasn't so changeling we'd have much fairer ground rules to fight with....Nazis is what they be..Nazi cancer hordes.

I'm of the opinion that early regular genetic blood biopsies may provide we (sufferers) children a better fighting chance.

BGoertzen profile image
BGoertzen

thank you, this is helpful info

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