Xgeva side effects?
Hello, I am HR+, ER+, MBC since 1 yea... - SHARE Metastatic ...
Hello, I am HR+, ER+, MBC since 1 year with Xgeva injections every month to strengthen my bones . Any one had experience with side effects?
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Dafi
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Hello, yes I have had side effects. I was diagnosed December 2015 and took Xgeva until January 2020. I had a tooth pulled in 2017 and was taken off the Xgeva as the drug manufacturers explained to do before and after. It basically never healed, being on pain meds I did not know it was not healing because I couldn’t feel it. The drug manufacturer also explained to not just stop getting it but since I was having more problems with my mouth my doctor did take me off of it. So in November 2020 I had a bone start growing out of the top of my mouth. I finally got into see an oral surgeon and February 2021 I had this bone which had grown to where it was taking up a lot of room in my mouth. They took the bone out plus 4 teeth and a lot of dead tissue. The oral surgeon said it was due to the Xgeva. I know this is long but I really want more people to know this I don’t believe it is very well known. Good luck and ask questions if you want.
Hello, I take ibandronic acid tablets orally and daily.. 50mg.. its working and I don't get side effects. You need to take them in the morning 30 mins before food and no lying down in that time (to protect against reflux) Personally, I dont like the 'huge monthly dose in one go' way of doing things
Happy to know those pills work for you and don't cause side effects. It is definitely something I would ask my doctor about instead of Xgeva.
I started Xgeva around February 2017 with monthly shots. After 6 months my Onc and I discussed pushing it out longer and now I have a shot every 3 months. Someone here posted a great video of a Doctor explaining how Xgeva works and how it helps to keep the cancer in the bones. He also confirmed that a shot every 3 months was as good as every month. On my next visit I want to discuss Xgeva again with my Onc as I’ve read that if you discontinue it then you can have rapid deterioration of the femur. These drugs come at a price it seems. So far I’ve not had many other side effects but I have my teeth cleaned every 4 months, floss and brush regularly. Hope that helps.
Hi, I'm a long timer with MBC, bone mets only--just over 17 years. Initially, Xgeva was not available, as in not created yet or something like that. I was on Zometa, an IV drug that was the treatment of choice for those of us with bone mets at that time. I was allergic to it (had an anaphylactic reaction) but we were able to work around that by giving me IV prep of hydrocortisone plus benedryl, 1/2 dose of Zometa, extra time for the IV (2 hours rather than 20 minutes) plus extra fluids. When Xgeva came along, I actually missed having time in the infusion room as it was a friendly place and alot of us patients chatted with one another while getting our IV treatment. I have had to go off each of these drugs for 6 months for dental work and that has seemed to make no difference to the cancer. I have had 3 Xgeva injections this year and just read that it can cause an allergic reaction of rash, bumps and itching of the skin. I've been battling those symptoms for several years and nev er connected them to the Xgeva! I am going to see my onc later this month and will ask her about that and will ask to go back on the Zometa. (I've seen 3 different dermatologists and an allergist and none have been able to figure out how to get me past these skin problems. I don't think this is a common reaction to Xgeva and I've never heard of anybody getting it. Keep in mind that we each react to all the meds we need for mbc differently.
I thought it was pretty common. I read in the side-effect literature that it is something like 20% who get rashes (eczema).
Do you mean from Xgeva? I never heard it before. Hope my onc will agree I should go off of it!
Yes, and my oncologist took me off it. I felt it was worth it, but she didn't. You can go on every three months, then it is much less severe. It is monthly that is bad, and that is usually just initially. Now I am going back on Xgeva. I reacted badly to the alternative, Dunosomab.
I've been off it for as long as six months but never made the connection to my skin. I don't think I ever had it monthly. I'd been on Zometa but switched to X when it became FDA approved. j
Hi I’ve been on Xgeva, Ibrance 125, fulvestrant since Dec 2020. Early days but everything fine. No side effects to anything apart from a bit of tiredness now and again. Go to dentist every 12 weeks for a check and clean and my dentist xrayed teeth before I went on it to make sure teeth and roots were ok.Debra xxx
