Denosumab

[Gwynhubhome]

Hello again, I wonder if anyone knows whether there is a medication similar to Denosumab which doesn't have the possible serious side effect - I mean of course osteonecrosis of the jaw. I feel I am a prime candidate for this as I have numerous dental issues and will certainly be needing some extractions in the near future. I have been having three monthly injections for the past two years without complications, my oncologist gives me dire warnings but assures me there is no alternative treatment and he wants me to continue. Does anyone have any experience or advice? Thank you so much.

[Garden-Lady]

Hi Gwynhubhome, I chose not to take the injections for the same reason. My oncologist, though not happy, has respected my choice. Instead I am taking good quality supplements, eating an anticancer diet with a great deal of green vegetables high in bone-strengthening calcium. And I take walks every day, using two Nordic walking sticks for support, as weight-bearing exercise also strengthens the bones. So far, so good.

[Building-strength in reply to Garden-Lady]

Hello there,

How long has it been since the Dr offered you the injections?

Have you had any other complications due to not taking them. I ask because I’m not a fan of a lot of medication and I do my research to ensure I’m comfortable with it or if there are any alternatives.

I just had dental surgery to remove a dental instrument from an old root canal and will soon be taking Xgeva

[Garden-Lady in reply to Building-strength]

I was offered it again last week. I've been on Ibrance for 5 cycles. So far, no other side effects except for slight hair loss.

[Rhwright12]

🤷‍♀️😱🤷‍♀️ What? There’s Xgeva which is the Prolia commercial that u see every day. I’ve used both. Xgeva caused me more bone aches especially while sleeping. So mostly used Zometa. Oh! And make sure they take a Dexascan to get a baseline and then later on to see if it does anything. My guy didn’t so we quit after 4 1/2 years. No clue if it helped or not. 🤷‍♀️Hope this helped!

[Thatflowerlady in reply to Rhwright12]

May I ask what a Dexascan is ? I have never heard of it . I have been taking the Xgeva injections for 5 plus years but will be looking at switching to Zometa as it is included in our Standard of care . Xgeva isn’t and it cost $700.00 plus a month .

[Building-strength in reply to Thatflowerlady]

That’s a long time. Do you get the injections once a month?

[Thatflowerlady in reply to Building-strength]

Yes I have every month for 5.5 years . It is a 2 second sting for me and that is it . I pick up refrigerated serum at my local pharmacy and take it to my dr office and a nurse gives me the injection . I believe the Zometa takes a little longer as it is an infusion but I have heard that some people only have it every 3 month , but I could be wrong .

Luann

[Building-strength in reply to Thatflowerlady]

I guess that’s what I have to look forward to smh. If it’s working it’s worth it. Be well. The cost is all these meds are extreme thank God there’s assistance!

[Thatflowerlady]

Yes Sandra he will be retiring this fall . He held on an extra year and a half so we had better health benefits . It sure helped with the crazy cost of ibrance ,faslodex & xgeva . Since I am no longer taking these drugs it will make retirement easier for him . And it is time .

[Gwynhubhome]

Thank you for all your posts - lots to think about but it looks as though I'm going to have to risk it if my consultant thinks it's important and worth the risk involved! All the best to you all,Gwyneth xx

[Thatflowerlady]

I don’t think I have ever had a bone density test . Luann

[Rhwright12]

What she said…😀

[luckysmom13]

XGeva and Zometa both carry the risk of ONJ. If you need dental work (especially extractions), please do this before you take either of these meds!! I was on XGeva for about 3 years and developed ONJ spontaneously without dental work being performed. I lost a piece of bone about the size of a nickel above two of my molars. I now have a hole there with the roots exposed.

[TammyCross]

Yes, Xgeva has the same risk. I had to see an oncology dentist. I had had an extraction and it wouldn't heal because of Xgeva, so I had to lay off for 3 months. She prescribed an antibiotic mouthwash. It seems to have done the trick so I will start Xgeva again (every three months) next week. I don't love it. To preserve my teeth, because I have a lot of crowns and fillings, she said no crunchy food. She doesn't mean chips, but raw carrots. No popcorn, no bagels. I don't know what else she considers crunchy.