Bone pain

[luxie69]

Hello everyoneI'm 53 and have triple negative metastatic bone cancer. Found out when my femur fractured last October. I'm on Xeloda. My bones in hip and knee are starting to hurt more, even though my last PET scan was clear. Why is this happening?

[SeattleMom]

Are you on any type of bone strengthener? Usually an injection every 3 months, such as Xgeva? This will typically cause bone pain for a few days following injection. One Claritin daily is very helpful. 💗🙏🏻

[Fiercefighter13]

I am ER/PR+ and recently started Xeloda. I started having almost unbearable pain in my joints, and got very stiff. Turns out the dead cancer cells can cause a cytokine storm resulting in tremendous inflammation, in turn causing a host of problems such as joint pain, fatigue, etc. the inflammation itself helps the cancer find ways around the chemo and learns how to grow around it rendering it useless. Taking 1/2 a child’s dose of aspirin daily and a diet super infused with Omega 3’s releases anti inflammatories called resolvins which stop the inflammatory response. The pain goes away, and the cancer won’t outsmart the Xeloda as quickly. My doctor has me on a diet heavy in Omega 3’s, arnica Montana, matcha tea, a tea called Houtunya Cordatta, and lots of vegetables. There are a lot of articles about this from Mayo and Hopkins as well as the N I H. I hope this helps, I can’t take the aspirin because my cancer spread to my stomach. I hope this helps, at least it’s something you can look into. My pain went from about a 6 to about 2 already, it also helped my feet and hands from getting irritated. Best wishes, take care!

[Sharon0122]

I am having severe bone pain in my back and hips. I can only stand or walk for about five minutes. The have done so many tests and can find no reason why. I also am on eliquis and have a very limited number of pain pills I can take, I take three 8 hour Tylenol and a 300mg of gapertine and still no relief . I’ve had MBC for almost two years and have been dealing with this for the past six months.

[luxie69 in reply to Sharon0122]

I'm so sorry

[TammyCross]

Bone pain is an uncommon side effect of capecitabine monotherapy, something like 1%. Those percentages mean nothing. Supposedly 5% of people who take Xgeva get ONJ, and I was in that five percent. Someone has to have it for it to show up as a side effect in clinical trials.

The inflammatory response described by FierceFighter is certainly something to look into, though.

[Timtam56]

I’m not triple negative, and I’m still on my first line of treatment which is ibrance, anastrozole, and Denocumab. But I get bad aches and pains in all of the areas where the cancer blooms are. They’re in my skull, my spine, my ribs and my hip. It seems there’s nothing that can be done for my pain and sometimes it’s terrible, and then at other times, it’s bearable. I get very confused about how much pain we’re supposed to put up with, and how much pain we should be attending to with painkillers. So my rule of thumb is if I’m not coping, I take extra breakthrough painkillers. I’m already taking Targin and (Panadol )paracetamol regularly. I find sometimes that ibuprofen works better for me. Certainly it does for headaches. I don’t know if that helps you at all.

[luxie69 in reply to Timtam56]

Thanks so much it totally helps just to hear that someone else is in the same boat.

[bzych06 in reply to luxie69]

Thank you. It does make me feel better to know I'm not alone. I am into my 7th year and coping, love this blog.

[dnamscg]

I fell so sorry you have to go through this pain. When I was first diagnosed in 12/21 they told me my left hip and femur were likely to break. So far they only cause alot of pain. I keep forgetting to ask my onc what I do when it happens as I know it is not like a normal break. How did you know when it finally happened. I refused Xheva because of the side effects. So far MBC is only in my bones but very painful especially at night. We have so many bones for this to ruin. Some days it is almost too much to deal with.