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possible to improve C Telopeptide Serum blood test for risk of osteonecrosis?

Verbena1 profile image
6 Replies

Hi, about 5 months ago I took myself off the Xgeva bone drug after being on it about 2 years or so. This was after learning I couldn’t be on it and also have the dental work done that I need to have done (cavitations etc).

My personal feeling after doing research over the years is that I’m not able to fully heal from MBC (which keeps coming back) until I can resolve these dental issues. I’ve had a CT scan of my jaw and it showed a few problems. Anyway, due to the possibility of jaw osteonecrosis, most holistic dentists will not touch a patient’s mouth until they’re within correct range of the CTX Telopeptide blood test.

I was told to wait at least 9 months after coming off the bone drug, then get the blood test and once cleared, they could get a dental treatment plan together.

I took the test about 4.5 months in, and the results were 84. I was told anything under 100 was too high risk still.

Being that I’m now on round 4 of my oncologic treatment lines, my concern is that if I wait too long, I could be in a worse spot medically. However, I understand why it was suggested for me to wait another few months and retest.

I really don’t understand too much about osteoblasts and bone formation etc. But I’m wondering if it’s a time thing - do the numbers generally go back up or correct with time?

I was also just taken off Lupron shots this month. Lupron is the reason I needed Xgeva to begin with, so I’m hoping being off both of them will improve my next blood test.

In the meantime, I’m eating as well as I can, taking Vitamin K2 and other supplements and looking to start weight bearing exercise.

If anyone can shed light on this for me or give me anecdotal tips, I’d appreciate it. Im 51 and pretty freaked out that I’ll never get ahead of this in time.

Thanks in advance -

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Verbena1
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6 Replies
Mavary profile image
Mavary

Hi! I’ve never heard of this so can’t help you. I’m sure somebody will come along with more info on your treatment.

Verbena1 profile image
Verbena1 in reply to Mavary

thanks Mavary~

Hi Verbena 1, this Health Unlocked site just deals with Prolia. You would need to check on a cancer website to check what they normally do regarding this drug Xgeva.

Verbena1 profile image
Verbena1 in reply to

oh ok got it and thanks, I didn’t realize that…I joined the group because it was called bone health and my q centered around strengthening bones, so I probably just assumed it was the right place.

Met00 profile image
Met00 in reply to Verbena1

This group is for osteoporosis, not just Prolia (denosumab), so I'm not sure what RosAdmin2 means. I've looked up Xgeva and see it's another name for denosumab. You should have been advised not to stop Xgeva without going straight onto another osteoporosis medication, however that wouldn't solve your problem with needing dental work. Without taking a relay drug, bone density plummets after coming off denosumab and takes up to 2 years to return to pre-medication levels, during which time you're at increased risks of fractures. I would definitely talk to your doctor as well as your dentist about the way forward with all of this. Sorry not to be able to give you better news.

Verbena1 profile image
Verbena1 in reply to Met00

I appreciate the input, thanks. Yes it’s super tricky. Because I honestly feel my life depends on getting this dental work done, I had to make some hard decisions and the risk of staying on these bone drugs turned out to be higher for me than the risks I take of coming off of them.

On Xgeva’s own website it mentions fracture risks both on or off the drug. And some kind of potential leg fracture by staying on it. I had to make a move already.

From the research I’ve done, I learned how toxicity re: dental issues (root canals etc) are off the charts in how highly linked they are to illnesses like cancer or other seemingly “incurable” illnesses.

My dentist is familiar with all of this but also knows that I’m not going to be eligible for any work until I can clear that blood test. And as you mentioned, it can take a while…

My oncologic team is excellent but does not believe in any connection between dental health and the rest of the body.

Fingers crossed I’ll be able to get to a point where I can safely have this work done! Thanks again~

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