XGEVA

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.

[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]

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 in reply to RyderLake2]

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

[RyderLake2 in reply to Seasid]

Hello,

Nine years and four months ago.

[Seasid in reply to RyderLake2]

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 in reply to Seasid]

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 in reply to RyderLake2]

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]

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]

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]

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

[Hidden in reply to ctflatlander]

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 in reply to Hidden]

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 in reply to ctflatlander]

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 in reply to Seasid]

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.

[Hidden in reply to ctflatlander]

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

[ctflatlander in reply to Hidden]

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]

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.

[Hidden in reply to monte1111]

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 in reply to Hidden]

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

[monte1111 in reply to Hidden]

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 in reply to monte1111]

Good point

[Seasid in reply to monte1111]

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 in reply to Seasid]

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]

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]

I'm not going there.

[monte1111]

Touche!