went off Xgeva for a year, have to go back on it. Ideas or tips helpful

[Verbena1]

Hi, the short version is I’ve been dealing w stage 4 MBC since 2019/ 2020 with mets to the bones since 2020, including a thoracic spinal fracture which led to a spinal fusion.

I was put on Xgeva for a couple of years and later read on Xgeva’s website that being on it long term is likely to increase risk of fractures substantially, not to mention increase risk of fractures in random places (like the thigh). Also it can cause increased risk of dental issues leading to possible Osteonecrosis (deadening and holes in the jawbone).

I spoke about this with my oncologist but there was no alternative. I came off it about a year ago so that I could get some dental work done. I vowed not to go back on it ever again.

He kept advising me to go back on it and I understood there were risks, but I was desperate to find an alternative. I started taking boron, Vitamin K2 and silica for a month or two.

Turns out I already had some additional progression of the disease and ended up with a pelvic fracture last month. I just had surgery to correct it.

I’m now looking at having to do chemo, beginning today which I said I’d never do. They say I’ll die if I don’t. I’m also having to go back on the Xgeva. I’m really discouraged and feel out of options but obviously saving my life comes first.

I guess my question is, is there still hope that if all goes ok with the chemo and there is a way to bring things back in my body to not so desperate, that I can still build my bones up in some way despite being back on the Xgeva?

I know this is a complicated question but I’ve tried everything and I’m coming up short.

thanks

[MWZ3]

I’ve never heard of that particular drug. They all look scary to me. I’m in hospital with a stress fracture to the knee. Apparently, they mend in a month or so.

Now comes the pressure too the drugs again. I had a compression one in the back a while ago.

I have no pain with this one either.

I was rough handled during a procedure on Monday which caused the foot to swell and pain in calf like from a bad cramp. This eased gradually. Then they found the knee fracture which is a stress fracture. There’s a possibility the rough handling caused the fracture as well.

It is sure hard to know the right thing to do.

[Verbena1 in reply to MWZ3]

I feel for you. I understand the frustration and really wish there were more answers. With all the advances in medicine, I can’t understand how there is no fix for fracturing bones that doesn’t involve more potentially fractured bones!

[MayGodBlessYou]

no real answers from me except maybe keep taking the supplements and vitamins? i wonder if vitamin b and d are ok to have with the treatments. a retiring doctor friend of mine has mentioned vitamin c infusion re: bone health, strontium, no dairy,

may seem least of issues, but if you're underweight, see if you can restore proper weight x

[Verbena1 in reply to MayGodBlessYou]

Thx for weighing in, I hope taking the B and D vits are ok to take, I did let my onc know and he seemed to think it was ok.

The Vit C infusion I’d really love to do, if I could find it cheaper.

My appetite thankfully is excellent, and I’ve gained back 7 of the 15lbs I lost in the hospital!