XGEVA let's talk about the good and the side effects
There is no topics devoted to XGEVA so I decided to start one. First here is the link with all the info. I believe this is one of the best new medications we have for bone mets.
This group will be a place to discuss the good and side effects associated or any experience you wish to discuss about Xgeva.
Comments
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Here is my side effects so far, So weight loss, no appetite and my teeth are sensitive which is freaking me out because of the potential for osteonecrosis. Anyone experience tooth sensitivity?
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I only have the shortness of breath, but both my meds (Xgeva and Faslodex) cause that.
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Terri-c... I heard someone else say sob also. Seems common. I have no had that one yet. I have noticed several dark spots especially on my legs. It looks like bruises but they are not. My endocrinologist said this may be a side effect. Anyone else experience this?
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I didn't realize that Xgeva could cause shortness of breath, which I have but blamed on basically being so out of condition. Maybe it's both! Anyway, good to know.
On the plus side, I have to credit Xgeva with improving my bone density over what it was 3.5 years ago.
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awesome news on the bone density.
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I am on xgeva. I started it in January, a couple of weeks after I started Arimidex. How do I know if it is working? I feel like I am in a daze. The onc says do this and I do. I have joint pain. Not sure if that is from Xgeva or Arimidex
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I was on Xgeva for 1 1/2 years and had no side effects. Currently getting Zometa infusions and have flu like body pains for 1-2 days afterward.
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I think the joint pain is from the arimidex. Have not heard anyone having joint pain from Xgeva.
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I've been on Xgeva since September, 2011. No side effects ever. And SO MUCH easier than the old Zometa INFUSIONS which I had for the six years prior to Xgeva!These Xgeva injections are a breeze time wise and side effects-wise.
Kessala
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I had two years of Xgeva monthly from 2011-2013. At that point, been getting it every three months. No side effects that I can attribute to it, actually. Doc put the dose down to quarterly to reduce the possibility of the more dangerous long-term side-effects.
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Thanks Sandilee.. so I am so glad you posted. My doctor said 2 years only. I will now investigate every 3 months after.
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Hey all-I've been on xgeva over a year now. I do notice that my teeth are more sensitive at the dentist but other than that no other side effects. No shortness of breath here. I'm training for NYC Marathon
I do hate the actual shot though. I think it really hurts. I am a huge baby when it comes to shots though and passed out during my first Fasoldex shot!!
Renee
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Thanks rseman.. glad to hear sensitive teeth seems to be normal. Being a nurse shots don't really bother me, I do get them always in my stomach, hurts less than in the arm.
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I've been on Xgeva monthly for probably 4 years now, prior to that I was on monthly zometa for 18 months or so (I switched over at some point, can't remember exactly when). I have absolutely no side effects and thank my lucky stars for that because my doctor says I'm getting it forever. I used to worry about ONJ, but my onc says it truly is quite rare.
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nancyh...do you mind if I ask have you had any bone progression on xgeva?
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Hi dixie - I've had a little progression in my bones over the years, but they have been mostly stable. My liver and brain have been my problem areas. Now that you mention it, I suppose the Xgeva deserves some credit!
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awesome news. My doctor said there is real thought that it causes an unhealthy environment in the bones for mets. Amazing since it's original use in cancer was to stop bone breakage.
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I've had two Xgeva injections so far and the only thing is a day or two after I feel a bit achey and tired, but otherwise no real side effects that I can tell. Also taking Femara and started rads to my right hip last week for bone mets. Just tired now, that's the worst for me.
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I have no symptoms that are worth complaining about. However, from an observation standpoint, I have also noticed minor tooth sensitivity (especially first few months) and some minor belly issues for the first two weeks after the shot. Staying hydrated by drinking extra water seems to help with belly issues. I read in the package insert that drinking more water than usual is recommended on XGeva because it dehydrates
This med has been a work horse for me in shoring up my bone pain. I feel better and better after each round. I tend to notice a week after the shot that an area that had been bothering me is improved or the pain is gone.
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great stories ladies
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I have been getting it once a month for 3 years. I do notice my teeth being sensitive which worries me a little bit, but they have always been sensitive. the only other se is the day of the shot and sometimes the next day I am EXTREMELY tired. I fall asleep at my desk and last time I actually started snoring. I a very happy with how it has kept my cancer under control. my onc also says it stops cancer from growing, not just for preventing fractures. I have never had a bone density test. until recently I also took letrozole, so I don't know which drug helped the most, but I sarted both at the same time and tm came down very quickly. they are up again now but no new lesions have been found, just 3 of them are showing activity so I guess that's what's making it go up. like Starbrightlyshines I am hoping to get them radiated, and hoping to somehow avoid afinitor.
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It seems sensitive teeth is very common. I also feel bad right after. Almost flu like and severe intolerance to cold (when all the other times I have hot flashes) Not sure which us worse.
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I have had two injections so far and I feel dizzy and developed Positional low blood pressure. Not sure if it's Xgeva or Tamoxofen. Anyone else
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Getting ready for my 5th Xgeva shot tomorrow. I have really not had any side effects that I can notice. I do know that the pain that I had in my left arm was so bad that I could not even lay on it at night..now I can and my onc says that it is the Xgeva that has helped this
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Lynwood, do you think the arm pain was from bone mets? I had trouble sleeping on my left side before I was diagnosed due to shoulder pain. It turned out to be mets to my scapula. Pain went away a month or so after I started treatment
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JFL, yes the arm pain is definitely from the bone mets. It's what sent me to the doctor which led to this discovery. I have multiple bone mets but my only pain is in my left arm. It's so much better but still bothers me at times
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I've been on Xgeva for almost 3yrs now, my regimen is every 3wks. I haven't experienced any major side effects besides occasional body aches.
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The first two months I got the Xgeva injection I had flu-like symptoms, but since then I've had no problems. I take two tylenol before the injection and that's about it. Hoping it stays this way!
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My doctor told me we will be stopping the Xgeva after 2 years. I have 5 months left. I am a bit nervous because this is my only medical treatment but he said the chances of ONJ are to risky after 2 years and since my scans are clear he feels we need to stop. I see some ladies are on more than that. Wondering what your physicians have said?
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Suefit: now that you mention it I had high blood pressure. I was taken off meds because my pressure is normal now. Humm maybe it does lower b/p. I will ask at my visit Friday.
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