Hi!! Has anyone had extreme pain in hips, groin and femurs caused by Xgeva?
I first started with pain in my right side. So bad that I literally have to lift my leg with my hands to get into the car. That was about a year ago. My doctor doesn’t seem to think there’s a problem and doesn’t address it. Just this last week, I now have the same pain in my left side. I am at my wits end because I relied so much on my strong side for many things like taking stairs. Now, it’s a huge struggle to even walk. I do not want to rely on pain pills. I take Tylenol and it takes a bit of the edge off. I cannot take NSAIDS because of stomach issues.
Just wondering if there is a better alternative to Xgeva that doesn’t have these severe side effects. I’m going to address this, again, next month, with my doctor. Until then….Thank you for listening!!!
Jody
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CTGirl1962
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I don’t think that’s a side effect of Xgeva. I’ve been on it since 2015. Bone Mets are painful in the way you describe. I take paracetamol twice a day because the Mets are not currently very active but I do still get twinges in my hips when I stand up.
If you’re uncertain it might be worth upping your pain relief temporarily to see if it makes a difference.
Thank you. My scans don’t show any mets in those areas. This is why I’m so confused as to why I’m having so much pain in those areas. 😢
I can’t take NSAIDS, so my pain meds are limited. I’m hesitant to take too many oxycodone tablets because I’m doing so well, otherwise. I’m saving up my resistance for a more difficult time. 🙏🏻🙏🏻🙏🏻
Pain relief can be a problem for some people. I’ve stopped opioids myself because it started to affect my balance so I take the equivalent of two Tylenol morning and night and save the opioids for when I’m in a lot of pain which is not often.
I take Loratadine daily and that’s said to reduce inflammatory responses like Claratin but it’s cheaper. There was a large study done in Sweden on the effectiveness of an added antihistamine on different cancers and Loratadine was found to be very effective for six cancers including breast cancer.
The option you’re considering, namely physical therapy, is a good one and hopefully it brings you relief. Your pain definitely sounds debilitating. The other drug aside from Xgeva is Zometa but your doctor would know that and he must not have recommended a change to that for a reason. Or you could ask for less frequent injections as you don’t have bone Mets anyway.
A friend on another site only had a single bone met in her rib 9 years ago and it was surgically removed. Her oncologist put her on Xgeva even though she had no remaining bone Mets and after seven years or thereabouts of the drug she suffered a spontaneous broken femur. That’s a potential side effect of Xgeva. I’ve read that some people believe that Xgeva treats bone Mets in a curative fashion so maybe the doctor has given it as a prophylactic. You could confirm with your doctor why you need it at all and if you do, why so often? It’s considered effective even when given 8 or 12 weeks apart. And I’ve seen that some have it 26 weeks apart.
Thank you so much!! I do have extensive mets in my spine and skull and upper body, so I’m sure that’s why I’m on the Xgeva. I just purchased the Loratidine this morning upon your advice. I pray that it works!! I’m also going to ask my doctor if I could do the shots every other month instead of every month if she feels I do need it (and I probably do because my spine is a mess!).
And, yes! I’m the same way with the opioids. Less is more, so it has to be full blown pain when I do take it. Plus, it takes away my freedom!! I won’t drive if I take one. A girl has grocery shopping to do!! Haha!
Sorry I misunderstood your comment about the bone Mets. I’m riddled with them too - literally from top to toe but I’m still here.
My oncologist told me last week that she thinks my Mets are aging out and are growing much slower. I’m 64. Who knew that was old? I’ve heard cancer grows more slowly in the elderly but I’m not elderly. Ok I do have more grey hair than I’d like 👩🦳 but if being called elderly is the worst thing I’ve heard then it’s all good.
My spine is bad too but I had radiation to a few different bits and I’m still standing. Mostly😂
I hope you find some relief with all the ideas you’ve been offered. Pain is debilitating and restrictions to our already restricted lifestyle is not ideal. Shopping is good for us. It involves weight bearing exercises which is recommended for bone Mets. I walk to my local shop and as I’m not a light weight I count that towards my weight bearing exercises and then there’s picking up and putting down whatever catches my attention! Honestly what isn’t shopping good for?
Have a nice break. You know the saying Eat, drink and be merry for tomorrow we diet? I’m following that maxim as long as leftover desserts remain.
Thanks for the chuckles!! You made my day!! And, no! You are NOT elderly! I’m 62 next month and still think I’m 30! Never grow old in our minds!!
I love your way of thinking about shopping and exercise!! The best exercise! Haha!!
Enjoy your Christmas and eat and drink all you want!! As for dieting, I have vowed NEVER AGAIN! Life is too short, so I eat ice cream every day!! Sometimes for breakfast!!
hi there. I had pain like that in my right hip, but it was from the bone Mets. I had radiation and it’s gone now. I’ve been on xgeva injections for 5 months+ now with no side effects other than stronger bones. Pain is real though. Have you tried physical therapy? I saw a physical therapist in the beginning to help strengthen my weaker side. It was very helpful. I’m also a fan of very hot showers. Gets into the full ache.
I also had a lot of pain following my Xgeva injections at times. My doctor told me it was related to the drug. I have had to take a month off to help elevate the symptoms. I have also found that a daily Claritin has helped reduce it significantly. Movement is also key. Hoping you find relief very soon
Thank you! I have read about Claritin and I forgot about it!! I’m definitely going to try that!! Fingers crossed!! I’m also going to try physical therapy as Warrior77 has suggested.
I do try to move as often as I can, but walking is also difficult due to the pain.
That is strange because I had exactly what you are describing from anastrozole -- had to lift my legs with my hands when sitting down, e.g., to get out of my car. I was on Xgeva and did not have that kind of side effect (I just lost part of my jaw and several teeth).
Claritin didn't work for me, at all. The palliative care nurse got me some CBD ointment. Didn't help. I ended up just living with it; exercising a lot, gently, gradually easing into moving more (it worked out some of the kinks); and taking Advil (but I hated taking it too often). Acupuncture is supposed to help with pain from anastrozole, but that is short lived relief. I had just been sent to a rehabilitative medicine MD, who referred me to PT. At that point, I went off anastrozole and that pain went away.
Maybe it is the Anastrozole! I think you and I had this conversation a while back. But, I read that I need to tell my doctor right away if I feel these side effects from Xgeva. I’m going to get to the bottom of it!!
Yup, it is the anastrozole. It would be much scarier and more serious if it were Xgeva. I looked back at that old conversation. Someone wrote that lack of estrogen can make your tendons hurt. I think they are less elastic or slippery. Yeah, that made me look at replacing collagen, but it turns out that produces more estrogen.
Yes! I stopped collagen when I found out I had MBC a couple of years ago. I also read that it actually helps to carry the cancer cells! It was on the NIH website and it was actually a clinical trial a while back. I definitely would have thought the opposite of collagen! Go figure.
No, I’ve only been using Xgeva. I’m thinking these side effects are from the Anastrozole. My oncologist is considering switching me to a SERD. We shall see, but I can’t wait to get rid of all this pain!! 🙏🏻🙏🏻🙏🏻
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