XGEVA let's talk about the good and the side effects
Comments
-
dixiebell- My onc agrees that the two years is a good stopping point for monthly injections. He now has me on quarterly injections, but then I still have bone mets--not clear scans.
0 -
Tomorrow I'll be making arrangements for an appointment for my first Xgeva shot. (My treatments have just started...going on third week of Arimidex, no SE's to date.) I will drink a lot of water (2 water bottles full) before getting the shot, but still, I'm--well, I'm a baby! My oncology nurse said if I like, she can spray that area of my arm with lidocaine before the shot. I was wondering if anyone has done this, and if it helps appreciably with the pain of the shot? Thanks.
0 -
Hello,
I have the shot in my tummy. One month on the right next month on the left. I honestly don't feel a thing maybe because there is more fat? Maybe you could ask to have it there instead?
Good luck
Xxx
0 -
Thank you, Mermaid. I have read that others do the same thing and, like you, they don't feel a thing. I don't know if I could summon the courage to have the shot in my tummy. The thought frightens me. However, I'm going to think about it. It sounds like the ideal way, pain wise. Maybe I can convince myself to try. I appreciate your writing this to me.
~xox
0 -
I get my first shot on Wednesday. I'm switching from Zometa, strictly for convenience. I'm tired of them having to place an iv every time. Not to mention waiting for the pharmacy and sitting in the chair for 20 minutes.
Thanks to all of you for "the word". I've had zero problems with Zometa that I know of; hoping it will be the same here.
0 -
My onc just stopped my Xgeva because he thinks it is intensifying the bone/joint/muscle pain side effects of the Faslodex. Guess we'll find out in 11 days when I get my next Faslodex shots.
0 -
Just posting for anyone researching Xgeva that there are many on the boards who have no side effects from it. I've had four shots so far and just the shot pinch has been it for me.
0 -
Back with my report. Switching to Xgeva and having the blood draw the day before lowered my "time spent" at the cancer center from 5 hours to 2 hours. Plus no iv. A major upgrade in my day. The only thing I've noticed that might be different is I'm a little more tired.
At 3:00pm, the usual "down after lunchtime" is a little more down. That COULD, however, be due to a couple of other factors: (1) this time of year, and (2) we're in the middle of fellowship interview season which is exhausting anyway.
0 -
Will they consider doing the blood draw the same day so you don't have to make two trips?
0 -
I wanted to do it this way. I can walk to a different hospital from my office. In and out in 5 minutes. If I have the blood drawn [at the cancer center] on the same day it usually takes 2 extra hours and a whole lot of aggravation. (most of the aggravation is that somehow the lab is always at least an hour behind by 8:30 in the morning)
They're only checking the kidney function levels (I think), so institute rules say anything 72 hour previous or later.
0 -
I had my first shot on Thursday after my blood draw. I let the MO tell me it's easiest in the tummy. Weird to get an injection there. But thus far all is good
Babs
0 -
Pajim - Glad you have a system that works for you.
Babs - Hoe your treatment is going well. Everyone says that shot in the stomach is painfree. I've only had the arm shot and it's really not much more than a flu shot.
0 -
Had my first shot last Wednesday, in the tummy, did not feel a thing. Had a bit of nausea the first day and fatigue for 48 hours. Very doable for me and much less time than infusion.
0 -
Is Xgeva for bone mets of all types of breast cancer?
Thanks,
Beatmon
0 -
Hi Beatmon, Xgeva and Zometa are the two "bone strengthening" drugs. They've been shown to be equivalent in various trials, and for people with bone mets, they keep [help] the mets in check. All typess of bone mets, yes.
Zometa is a bisphosphonate. Xgeva is a RANK-ligand inhibitor, so different mechanisms of action. The other differences are in administration (i.v. vs. shot) and expense (apparently Xgeva is 5x+ more expensive).
Different cancer centers have different views on which one they give. I took Zometa for 2.5 years. I've switched because (a) I'm having progression to maybe I'm refractory to Zometa, and (b) it's WAY more convenient. I admit that the cost issue gave me pause but insurance covers both so I decided what the heck.
0 -
I didn't realize there was another option to xgeva. Not that I want infusions but the cost. Oh my. I'm on Medicare. Denied a supplement due to cancer and state says that's ok bc you're under 55.
Is anyone getting any assistance with xgeva?
I had my 2nd shot today.
Thanks.
0 -
Yes, there are some assistance programs from Amgen for XGEVA. Here's the link. Amgen Assistance
0 -
Thanks, pajim
0 -
My last few shots in the last 3 months have been very harsh, headaches, flu like symptoms and joint pain. But I still feel it is worth it. I have been trying to get on Fridays and feel ok by Tuesday! I get my last shot in February!
0 -
I used the assistance program from Amgen for XGEVA. They paid for the first shot and then all but $25 for the rest. My copay was $400/mo so it waas great. The first shot also included my deductible and they even paid for that!0
-
I was switched from zometa to xgeva about two years ago. I have not had problems with either. I have been NED for over seven years. I switched my herceptin from every 3 weeks to every 4 weeks. That way I go into the hospital outpatient clinic only once a month. Re the xgeva I make sure the shot is not cold. I take it in my arm/wings and ask that it be injected very, very slowly. I rag doll myself so it does not hurt - just uncomfortable. Re side effects, I don't know if I can distinguish between herceptin and xgeva. I schedule my infusions for late in the day so that I can minimize the impact on work. Afterwards I go home and sleep. I agree with the person who recommends drinking a lot of water.
0 -
Anybody have severe hip and/or lower back pain from Xgeva? I had to stop Zometa because of hip pain and try Xgeva, but I think I may be getting similar side effects.
0 -
I have a lot of pain in one hip, no mets or anything there, and I too switched to Xgeva with no change.
0 -
Nothing. No pain that is. I have creaky joints but I'm pretty sure that's the Faslodex. Nothing different than with Zometa.
0 -
Yes I also have back pain BUT my tumor that is now showing as only scar tissue was close. I do have hip pain also though!
0 -
Anyone notice any changes to their hair? It was fine and thin originally but would hold a style. Chemo curls were great. Was thicker after chemo. Now it's very fine, soft, not as thick and just flops. I have a great hairdresser and it gets cut regularly.
I have no idea if it's the lack of estrogen (ovaries removed), arimidex or xgeva. All started at same time but my hair is driving me nuts.
Thanks.
0 -
Zills
Have your ferritin (iron) level checked the next time you do blood work. For hair purposes, anything under 70 isn't good. You would need to take Biotin and Slow-Fe ( an iron supplement). I work for a hair restoration specialist and have the same hair issues now. My ferritin was only 22. I've been on the supplements for about 1 month now. When they take my blood again on 12/22 I'm having the ferritin level checked again to see if I need to take more of the iron.
Babs
FYI I am also using a topical 5%minoxidil/retinol combo to help the situation.
0 -
with xgeva labs are checked every month but iron isn't one of them. I'll ask (if I can remember:). Thanks for responding. I know in the grand scheme of things it's trivial but I just want something to be normal or better than normal. Is cute or sexy too much to ask
0 -
Zills,
The Dr I work for advised that it could take up to 5 months to raise one's ferritian levels. Im also eating spinach, peanut butter, beans, kale-basically anything but red meat that helps. I don't eat any red meat.
Babs
0 -
Babs, I hesitated to weigh in earlier when iron was mentioned, but for what it's worth, here are a couple of articles that have impacted the way I think about both peanut butter (I used to eat a lot of it, but don't now), and iron-rich foods, like kale.
http://www.ncbi.nlm.nih.gov/pubmed/25326505
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC373634...
No doubt, there are many nutrition articles saying both peanut butter and iron-rich foods are beneficial. I don't know what the bottom line is -- just sharing what I've read that has given me pause about eating certain foods other than very occasionally. Deanna
0
