XGEVA let's talk about the good and the side effects
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Wonderful! And my MO knew what I was doing! Since I was just told my liver mets increased in size maybe I should just deal with thinning hair-it's not the worst thing!
Babs
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I had my first Xgeva shot on Thursday, and since last night I've had a really weird medicinal taste in the back of my throat. At first I thought I was just extremely dehydrated, between Faslodex, Ibrance and now Xgeva. But I've had a lot of water today, and that odd unpleasant taste is still there. Anyone else experience this with Xgeva? Just curious... Deanna
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dlb823, I got that taste with Zometa. Used to last a day or so then went away. It could be the Faslodex, but since I've switched that taste has mostly gone away.
Question for everyone, do you find that denosumab (Xgeva) raises your blood pressure? Mine's been going up steadily since I switched from Zometa to Xgeva.
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Deanna - Glad everything worked out for you to get on Xgeva. I did not have a taste side effect. My onc's office mentioned that some people get a flulike symptom afterward. I can't say I've had any particular side effects from Xgeva. I've been having a little jabby feeling in one of my mets areas - hoping it is due to healing since my TM's are still trending downward. Hope that sensation leaves you soon. We get these odd things, and who knows what they're due to.
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Oh, glad to know you had a similar weird taste w/Zometa, pajim. Since I've never had that prior to Xgeva, I think that must be what's causing it, since a bone building drug did it to you.
Moissy ~ I didn't have flu like symptoms -- just some increased rib pain the first night, then lower back kicked in yesterday -- which, like you, I also chalked off to it working -- and a couple of waves of nausea that passed quickly. Oh, and the first night, my head was pounding with an almost audible stacato beat --- not a headache -- just an odd pounding that made me wonder if my blood pressure was suddenly spiking. Thankfully, that didn't last. Hopefully all of this will lessen as time goes on and my body gets use to it.
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I have another question for those of you who have been on Xgeva for awhile. Have you seen any difference in your nails? Mine have gotten so bad since I've been on Faslodex+Ibrance -- very thin and weak and they crack and peel -- and I'm just wondering if maybe the Xgeva I've just started might eventually help them get stronger. Anyone noticed an improvement?
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I've been on a bone strengthener for three years. Zometa for most of that but Xgeva for the last four months. My fingernails are OK but my toenails are a mess. Thin and weak about covers it. I can't really speak to cracking and peeling because I bite (fingernails), but toe nails, definitely.
BTW I asked my onc about hypertension. He stared at me and said it's not a side-effect of Xgeva. He should remember that I only have the weird side-effects. If my blood pressure gets any worse I'll have to remind him of that.
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My nails were weak too. I find that taking Caltrate minis plus calcium makes them strong. I take two twice a day.
It's my hair that's flat and flops that's driving me insane. I have a great cut. Switching shampoos or product doesn't help. I know I should've grateful I have hair.
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Another question... For those of you who have had some noticeable bone pain with Xgeva, was it just within the day or two after your shot, or did anyone have at times what seems like increased bone pain that made you wonder if you were experiencing progression or worsening mets? This past week I've noticed that my rib pain seems to come on sooner than it had been when I've been active. I want to believe it's the Xgeva or Faslodex or Ibrance working, but then there's that little worry. Just curious about your experiences. I have scans on 2/19, but just trying to stop the worrying!
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Deanna - Yes, I have had some days of slight increased pain that did not coincide with one or two days after a shot. Of course the first thought is whether it's a worsening symptom. But just had a scan that showed no active disease, so I chalk this up to some areas of bone healing since it was in an area where I knew I already had mets. Wishing you well on your scans!
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Xgeva is much more convenient due to the shot. It doesn't hurt, or I've become immuned since being a pin cushion the last 6 years. It's helped my bones met immensley.
Terri
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Deanna: Yes, I've definitely had increased aches and pains since starting Xgeva in August, especially in one rib area where I know I have mets. But everything has been clear and has shown significant regression. But I agree the head game is the challenge!
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Thanks for the encouragement re. my question about pain. It really is such a head game! I mean, I feel much less worried just knowing that at least two of you have had increased pain and still had encouraging scan results.
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OH WOW about the KALE and Peanut butter and IRON. I juice and do smoothies everyday loaded with KALE. I just found out I have a new mets, The reason I came to talk about it is I was on Xgeva for 2 years. In 2014 I did the 3 month Rick Simpson treatment and came back NED. I stayed on the XGEVA for 2 years and stopped the CBD oil after the 3 month regime. Well I finished the 2 years of Xgeva in January and low and behold I was scanned last week and have new bone mets, sacrum, pelvis and 7th rib. I really think the xgeva helped stop the progression. I am going to now go on a hormone suppressant ( he is recommending the once monthly injectable one) and do 3 more months of the cbd oil. ( I wish I had done maintenance of the oil but I live in a state that it is not legal and had to be in California for 3 months). Anyway I just wanted to say besides tooth pain on and off and a few thyroid issues I had no problems with XGEVA and really would recommend it. I did get the flu like symptoms 3 times (not sure if related) but no serious bone pain. Hang in their ladies I do believe it works and is well worth it. I just wish I could have stayed on more than 2 years but my doctor refused to administer it longer than that,
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Can I be the only one who thinks the Xgeva is what is causing me the most horrid ongoing fatigue ever? I had my first monthly shot back in November, then had it put on hold while a dental issue was resolved. After that first shot, my hair began to shed heavily. I didn't really think much of it at the time, until I restarted the drug in mid-March. By that time, the hair shedding had slowed down, but it came back about a week after the shot. Then I had another shot four weeks later. By that time, my hair was falling out in clumps, or at least what I consider to be clumps. During the eight-week period of those two back-to-back shots, I was out of it a good bit of the time. In fact, I have taken Ambien nightly for years, and was so tired, presumably from the Xgeva shot, that I no longer require Ambien to sleep! Who ever hard of breaking a 10-year Ambien habit without even trying? haha (This is actually a very good thing, IMO.)
I talked to MO at my visit a couple weeks ago, and she agreed to push the Xgeva to every two to three months for me. I honestly don't know if I want another shot. My QOL was just shot, no pun intended. My hair is still shedding at this point, to the point where I've lost about half of my hair (apparently a side effect for 12% of people), but the fatigue is lightening up the farther I get away from that last injection. I had only one bone met that was then quiet at my last scan, but I have another scan coming in June, so we'll see how things look then. I take nothing for granted.
Does anyone here have an opinion on how truly important this drug is to our survival, and do people sometimes choose not to take Zometa/Xgeva/Prolia, etc. for their own reasons? I know it can help reduce bone mets, but is it as crucial as the main cancer drugs like hormone blockers and chemo? I will take it if I have to, but wow, out of all the things I've been on, this one has really done me in. Or maybe it's the combination of everything together, who knows! All I know is it seemed to make me a very thin-haired zombie.
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Lovelife49, are you on any other medication? I honesty have not heard of the hair loss as a side effect of xgeva, flu like and fatigue is common up to 3 days after shot and a few report bone pain but that is about it. I really believe it helped me but we all must chose our own path. To me quality of life is better than quantity but everyone needs to decide from themselves. TYROID ISSUES CAN BE A SIDE EFFECT so get you thyroid levels checked ASAP. You sound hypothyroid possibly?
Jamie
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Jamie, thanks for responding. I didn't think hair loss was a side effect, either, until I spent one sad Friday night looking online after getting really frustrated at how much hair was falling out. I don't know if "hair loss" as a side effect means complete hair loss or just some amount of hair loss for those people affected. Of course, I'm also on Zoladex and Femara, so that could be contributing to it, too. I'm trying not to be upset about it. I did have my thyroid checked just two months ago, and it was normal. I'll ask for another test at my next labs in June.
I will keep taking the Xgeva, but if every three months is okay, which MO said it was, then hopefully that will at least make me only very tired for six weeks out of twelve, or perhaps I will eventually just get used to it like people do with Zometa.
Did you change your picture since yesterday? It's a lovely photo!
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Lovelife49. Yes I did change my picture. Everyone though that was my baby but it is my grandchild. So I went on a cruise and took a great pic in December so here it is lol. I wish I could still take it because I think it helped my but my MO says 2 years is the most he will give.
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Lovelife, have you considered switching to Zometa? It's an infusion rather than a shot, which means you need an iv and sit in the chair for 15-30 minutes, but it has a completely different mechanism of action. It accomplishes the same thing but on a different biological pathway. Your hair might (or might not) come back.
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My MO has me taking Xgeva every other month to start and says they typically then change it to every 4 months after a year. My mets are sclerotic rather than lytic, but I don't know if that is why. Xgeva has a slight advantage over Zometa especially for spine mets according to the literature, which I'm sure is why my insurance company is allowing it over Zometa, because of the ACA which requires palliative care. I've had no side effects except maybe a slightly runny nose which also could be allergies. I actually felt really energetic after my first shot, but that could be because of the magnesium I'm taking to counteract the constipation of the calcium I'm taking for the Xgeva. Who knows?
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Pajim, thanks for that suggestion. For some reason, I hadn't even thought of asking if a different form of zoledronic acid might alleviate some of the side effects I'm experiencing. I feel terrible for being upset about the hair, yet most of us know it's the one thing that keeps us "hidden" when we don't want to talk about cancer, and I'd just hate for the bone drug to be the reason my head goes bare. It's not there yet, but it will be if this keeps up. I'm sure the other two drugs aren't helping matters any. Honestly, my biggest overall side effect from all drugs combined is fatigue, horrible fatigue. I'm not quite sure what to make of that and sometimes worry it doesn't bode well for what may be going on in my body, but I'm trying not to think that way! Thanks again for making the suggestion about Zometa -- I will bring that up with MO at my June visit.
Dixiebell, I wish you could convince your MO to let you keep taking the drug you felt helped you. If you're willing to take any risks for staying on it longer term, I don't understand why a doctor wouldn't let you continue it, at the very least quarterly. I'm sure that's frustrating for you!
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I'm about to start Xgeva and was so grateful to find this thread.
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I've been on Xgeva since Last August with no SEs. Thank goodness!!
Babs
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I hope to follow in your footsteps, Babs
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Jen
I hope you do too!!!
Babs
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I have been on xgeva for three years. The first two I got a shot every month now it's every 2 months-no side effects that I've noticed except soreness at injection site.
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I went to my dentist today (before starting Xgeva) and wanted to check in with this group. She said the key is to take really good care of the teeth while on Xgeva and not to eat anything hard that might crack a tooth. I have three old, big fillings that should eventually be replaced with crowns. She said it would be fine to do themwhile on it since all the work is done above the bone line. The worse scenario would be if one of the fillings cracked and we had to do an implant.
Has anyone done a crown while on this medication
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Hi Jensgottis:
I was told today at MD anderson to not even have a crown but if needed to get off for 3 months have it done and then back on.
Everyone, I went to MD Anderson in Houston today. They stated and sent a letter to my MO at home to start xgeva again monthly. He feels it is the most important drug I can be on and said he completely disagrees with 2 years only. He also said he feels I should continue monthly! I was happy to hear that.
I have also agreed to start the hormone therapy. I had so many issue when I tried it in 2012 that I said no way. But I know I really need to add it. SIGH......
Hope everyone is having the best week possible.
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I was on Xgeva for a short time when I cracked a tooth, had it pulled, and ended up with ONJ. Three years later, after being ONJ clear for two years, I was allowed back on Xgeva. I've since had a crown to replace an old filling (tooth had a small fracture) and I am having another crown done soon. All while on Xgeva.. And witha history of ONJ. Ultimately, a good crown is safer than risking an injury to the tooth that would require more extensive dental work. I can NOT go there again.
Jennifer, my dentist is amazing. She's in Santa Monica. PM me if you want her name.
Stefanie
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Thank you stefajoy. Scary stuff. I cannot imagine what you went through.
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