XGEVA : I was receiving Xgeva every... - Advanced Prostate...

Advanced Prostate Cancer

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XGEVA

26 Replies

I was receiving Xgeva every 4 weeks for 2 years, and suddenly my Oncologist cut it back to every 3 months......can anyone explain why? Does it even do any good to have that much time between injections? I thought it had a 28 day half-life

Help!!

Also my care team no longer accepts my insurance and I'll be over a month late for both XGEVA and Eligard injections when the new insurance kicks in.....will that matter? I'm 3-1/2 years into treatment, what should I expect moving forward? I hate the side effects, and when Hormone Therapy fails, I do not wish to experiment with other treatments.

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26 Replies
MJCA profile image
MJCA

Hi TommyCarz22,

You are just being changed to a different dosing of Xgeva. When there were shortages during the pandemic, I was dosed monthly, then returned to both Xgeva and Lupron injections every 3 months. It’s easier you don’t have to go every month.

Chemically, Eligard and Lupron are the same; they are just administered differently. Lupron normally injected in the hip/buttocks area. Eligard in the abdomen. Just make sure they take their time injecting Eligard.

Do not be too concerned about the time lag. Due to new side effects, I was taken off my old med in mid-August. Due to insurance and timing issues, I won’t start my new med until November. Yes, I DO worry a bit, but I am not losing any sleep over it.

Stay well!

Mark

RyderLake2 profile image
RyderLake2

Hello,

My guess is your oncologist feels your bones no longer need quite as frequent treatment doses of Xgeva (denosumab) and that a maintenance dose once every three months is sufficient. Under the trade name Prolia (also denosumab) I receive an injection once every six months strictly for bone health along with daily Calcium and Vitamin D pills.

Seasid profile image
Seasid in reply toRyderLake2

How long time ago did they start giving you prolia every 6 months?

RyderLake2 profile image
RyderLake2 in reply toSeasid

Hello,

Nine years and four months ago.

Seasid profile image
Seasid in reply toRyderLake2

That is great!

I just don't understand why they want to stop Xgeva after only 2 years if you can continue 10 years denosumab (prolia) six monthly for bone health???

Are you also confused or is it just me?

RyderLake2 profile image
RyderLake2 in reply toSeasid

Hello,

If you are getting a maintenance dose of Prolia and the intent is to prevent a Skeletal Related Event (SRE) then I don’t see any reason to stop. My medical oncologist, a very wise and caring doctor, has never suggested that I drop Prolia (denosumab) and I have never asked him to do so. My family doctor always checks creatinine levels before administering the shot.

Seasid profile image
Seasid in reply toRyderLake2

I understand that. I just don't understand why they say that after 2 years you can drop Xgeva?

Why would not just simply continue with prolia?

I believe that stopping Xgeva had also some risck involved. I am not sure as i am not a doctor but that is what I found on the internet consulting dr Google.

Tall_Allen profile image
Tall_Allen

The reason you are being taken off monthly Xgeva is that side effects get worse after 2 years. Every 3 months will be helpful but not as helpful in the long-term.

Yes, it matters if you often miss your Eligard injections. It is permanent, so you can discuss orchiectomy if you don't wish to have injections. Fortunately there are many non-experimental drugs you haven't tried yet.

MateoBeach profile image
MateoBeach

it is probably a good idea to de-intensify Xgeva treatment after a few years. Risks of adverse effects are cumulative (ONJ and brittle bone fractures) while protective effects in bone are durable beyond clearance of the denosumab. I think it is wise.

ctflatlander profile image
ctflatlander

Was on Xgeva 3 yrs every 3 months.. Had to quit after last shot in march 22, developed ONJ. No fun

in reply toctflatlander

Did you have dental work done while taking Xgeva? I took preventative measures and had 8 teeth (all wisdoms and molars) extracted one morning prior to starting Xgeva. But I do have a few new cavity issues

ctflatlander profile image
ctflatlander in reply to

Tom, I haven't had issues with my teeth in years, for that matter only have 4 filled cavities. My dentist just does cleaning and remarks about how great my gums and teeth are. I take good care of them and its probably genetics or being brought up on goats milk. After talking to other members on HU, it may take 2- 2 1/2 yrs to heal w/o surgery. Hopefully I won't lose a tooth. I'm 78. I should never have been put on Xgeva. My dexa was mild ostopenia at the start of first injection. Bob

Seasid profile image
Seasid in reply toctflatlander

Can you change dentist? My dentist is not doing cleaning. I have a dental hygienist and I believe that is better as they are more specialised cleaning teeth. They don't do anything else.

ctflatlander profile image
ctflatlander in reply toSeasid

I am seeing an oral surgeon in a hospital setting who specializes in maxillofacial surgery. My dentist who is close to retirement rarely sees ONJ cases.

in reply toctflatlander

what were your symptoms...or didn't you have any, and was discovered at routine cleaning?

ctflatlander profile image
ctflatlander in reply to

It started with discomfort in an area behind the rear molar. A small bone then appeared in that area and gradually over time increased its bone size to an estimated area of about 3/8 dia. I think it is still growing but I'm able to put some pressure on my bite. My oral surgeon thinks Xgeva will leave by Dec and he is watching it to avoid surgery or pulling any teeth.

monte1111 profile image
monte1111

I've had Lupron and Eligard both in the abdomen. I had Xgeva monthly for about 3 years, and then every 3 months for about 2 and a half years. The automatic prescription renewal ran out and MO discontinued it. Commented in her message should only be taken 2 years. WTF.

in reply tomonte1111

I started with Eligard in the stomach, but for the past 2 years it's been given in my arm, just like the Xgeva

Seasid profile image
Seasid in reply to

Probably just for convenience in order to save couple of seconds? Where do you treat yourself? Who is giving you the injections?

monte1111 profile image
monte1111 in reply to

It's what you prefer. It's the subcutaneous fat of the arm or belly. I'm guessing anywhere in the body that has enough fat. I just like to show the nurse my bellybutton.

Seasid profile image
Seasid in reply tomonte1111

Good point

Seasid profile image
Seasid in reply tomonte1111

I didn't know that Xgeva should be taken for only 2 years. Is that based on some clinical trials or on the manufacturer recommendation or on something else?

Where do you treat yourself?

monte1111 profile image
monte1111 in reply toSeasid

Treated at Kaiser. See Tall_Allen's reply above. I believe it's because of increased risk of ONJ and fracture risk. (I think especially the thigh bone, don't quote me.) Also see MateoBeach's reply above. They are both very wise men. Also see ctflatlander's reply above. He also wise.

monte1111 profile image
monte1111

I think she was thinking that. Well, That's Funny. I should have read the directions. Do you play a lot with pickle balls?

monte1111 profile image
monte1111

I'm not going there.

monte1111 profile image
monte1111

Touche!

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