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Advanced Prostate Cancer

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New to site. Looking for side effects of Xofigo.

Prostratehelp profile image
12 Replies

New to this site. Have Metastatic Prostate Cancer in Lymph Nodes and various bones ( sacrum, pubic bone, ribs, spine and others. Currently on Eligard and Xgeva. Just finishing 3 weeks of radiation on lumbar area of spine. Have been on Zytiga and Prednisone, Xtandi. Terrible side effects while on Xtandi so they stopped it 3 months ago. Will soon be going on Xofigo and am concerned about the side effects. Can anyone tell me about any side effects they are having while on Xofigo.

Thanks,

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Prostratehelp
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HB1966 profile image
HB1966

Hi,

next week I get my 4th Xofigo. I have no side effects until now. Regards Theo

Prostratehelp profile image
Prostratehelp in reply to HB1966

Thanks for the reply. Good to know that you are not having any side effects. Have the list of possible side effects and they indicate that more than 10 % of patients have them.

This drug is very expensive. How does anyone afford it?

HB1966 profile image
HB1966 in reply to Prostratehelp

Hi,

yes, unfortunately these drugs (Xofigo and others) are very expensive. As far as I know, the Xofigo costs about 5500 € (= 6000 $) for one shot. I live in Germany and am insured in the statutory health insurance. For each drug I get, I have to pay a maximum of 10 € (= 11 $) own contribution. The rest pays the insurance.

I started my Xofigo treatment with two other patients at the same time. Even there, the side effects were rather moderate. Just a little diarrhea. This can be treated with the appropriate medication.

You should think positive. If 10% of patients have side effects, then 90% have none.

AlanMeyer profile image
AlanMeyer

Here are a couple of FDA (Food and Drug Administration) documents on Xofigo:

FDA drug label: accessdata.fda.gov/drugsatf...

Drug safety related labeling change: accessdata.fda.gov/scripts/...

Alan

zazi717 profile image
zazi717

It's just like Theo said, you should not have any side effects,

and this means that if you do have (for ins. nausea) you should consult a gastroenterologist without delay.

hope xofigo helps you, Zazie

tango65 profile image
tango65

This is a list of the side effects:

rxlist.com/xofigo-drug.htm#...

GP24 profile image
GP24

Here is a video about Xofigo treatment:

library.mirrorsmed.org/sess...

Prostratehelp profile image
Prostratehelp in reply to GP24

Video was very informative. It appears that based on the conclusions, I am at the correct stage for beginning Xofigo.

One thing that was also informative, was their side effect ratios. Much much lower that what has been stated in documents I have read.

Thanks.

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

Greeting to you,,,,

Would you be kind enough to give us more info about yourself. All voluntary... age? location? treatments? treatment center(s)? PSA and Gleason scores? Doctor's name(s). This info helps us help you and helps us too. Thank you....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/11/2019 6:03 PM DST

Sxrxrnr1 profile image
Sxrxrnr1

Am I remembering correctly trials that have suggested no advantage or reason to be on both Xtandi and Zytiga at the same time.

Not mention for many of us on Medicare and no Caddylac insurance the costs would be prohibitive.

NotKidneyStones profile image
NotKidneyStones in reply to Sxrxrnr1

Looking for a bit of clarification on SEs: You don’t mentions fatigue with Radium223.

In my case, I previously had Docetaxil and experienced some fatigue, but worked through it. I’m currently in a trial that combines Radium 223 (reduced frequency) with (reduced dose) Docetaxil. This trial increases my fatigue by orders of magnitude. I couldn’t work thru it. (I’m On FMLA).

Is there any other experience like mine? Maybe it is The combination of the drugs...

Thx,

Prostratehelp profile image
Prostratehelp

I just finished my 3rd infusion of Ra223 (xofiga). Fatigue was slightly more after this infusion. I also get monthly injections of Eligard and Xgeva.

I have run the gamut of the drugs, Codesex, Zytiga w/Prednisone, and Xtandi. Only moved on with each drug once it appeared to stop working. I was extremely allergic to the Xtandi and they took me off very quickly.

My PSA is running in to 2.5 to 3.2 range right now.

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