Zometa, ONJ, when is it really necessary?

Posted by brighterdays @brighterdays, Oct 8, 2023

Just started on Aromasin 2 months ago. Also on OFS every 3 months. Age 48. My oncologist recommended I get Zometa infusions of 4mg every 6 months for 3 years. Saying it decreases mortality and metastasis in the bones. I’m stage 1 IDC, peanut sized tumor on right breast, grade 3, no lymph involvement.

I later got a DEXA scan which showed osteopenia in both hips, lower spine is very strong though.

I’m hesitant about getting the infusion because of ONJ. I’ve had a lot of dental work done, many root canals and crowns and a couple of implants.

If you are on Zometa, what is your dosage and how often do you get it? Anyone have ONJ and what was the experience like?

I’d want to increase my chances of a long life after this diagnosis because I have a wee 7 year old but these side effects are scary.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

I would be curious to see any studies that show Zometa (or Reclast) can help prevent metastasis to the bones.

I had pretty severe osteoporosis before starting my 5 years of letrozole and lost a good amount of bone density because my docs did not want to put me on Reclast (same med as Zometa) due to afib, which has since proven not to be a concern.

I went on Tymlos and regained all that I lost and more. After two years of Tymlos, 9 years out from cancer diagnosis, I am now going on Reclast!

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I refused Zometa. After reading the discussions of serious side effects on this forum I felt the so called benefits did not outweigh the risks. Have never seen any info about Zometa preventing metastasis.

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@brighterdays one other thing: My doc has prescribed a 20% test dose for me of Reclast. I am hydrating the day before, the day of and the day after, and also requested IV hydration. I will ask for a slow infusion. These are strategies for lessening side effects.

Many women I know have had no side effects whatsoever but I have health issues that concern my docs, mainly afib and kidney disease.

Anyone who does not do Reclast, Zometa or other medication for bones during aromatase inhibitor treatment needs to watch their bone density. The main function of these meds during cancer treatment is protection of bone density.

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And don’t forget if you do Reclast etc - no dental work for at least 90 days! Very important!!

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@windyshores

I would be curious to see any studies that show Zometa (or Reclast) can help prevent metastasis to the bones.

I had pretty severe osteoporosis before starting my 5 years of letrozole and lost a good amount of bone density because my docs did not want to put me on Reclast (same med as Zometa) due to afib, which has since proven not to be a concern.

I went on Tymlos and regained all that I lost and more. After two years of Tymlos, 9 years out from cancer diagnosis, I am now going on Reclast!

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Thanks for this link! I am so scared to go on bisphosphonates as I have significant TMJ with one disc totally eroded due to clenching. I wear a very expensive mouthguard nightly which helps but at 58 yrs old and needing a few crowns, filings replaced I dread the side effects of these drugs. My doc only mentioned it would help me alleviate risk of curvature, hunch back from letrozole estrogen depletion, etc. I'm only 8 months into Letrozole but know it will get worse. Maybe I can avoid curvature ?? She didn't mention anything related to bones mets. Any advice?

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@semurrey

Thanks for this link! I am so scared to go on bisphosphonates as I have significant TMJ with one disc totally eroded due to clenching. I wear a very expensive mouthguard nightly which helps but at 58 yrs old and needing a few crowns, filings replaced I dread the side effects of these drugs. My doc only mentioned it would help me alleviate risk of curvature, hunch back from letrozole estrogen depletion, etc. I'm only 8 months into Letrozole but know it will get worse. Maybe I can avoid curvature ?? She didn't mention anything related to bones mets. Any advice?

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Curvature comes from fractures resulting in lower bone density. What are your DEXA scores?

I did 5 years of letrozole and my docs did not want me on Reclast or Zometa (same med) due to other health issues. I already had pretty severe osteoporosis when I started, and three old fractures from a traumatic fall.

I did lose bone density and due to COVID was late in starting Tymlos, a bone-builder and did have some lumbar fractures.

But Tymlos has returned my bone density to pre- cancer levels in two years of treatment.

So one option is to monitor your bone density and do Tymlos later. One caution: Just as with menopause, I lost maybe 10% bone density when I started letrozole but then it levelled off.

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Thanks so much @windyshores! Is Tymlos a biosphonate?? No fractures so far and willing to risk as so afraid of these meds but perhaps Tymlos works differently as it seemed to be the right med for you!!! I will get another DEXA next February as recent one in Feb 2023 showed almost osteoporosis and onco thinks I will certainly be there with Letrozle.

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I'm on anastrozole for 8 months now. My DEXA was borderline osteopenia at the beginning but my onco told me not to worry about osteoporosis. They have meds for that! I prefer preventive measure. So I cooked salmon bone in pressure cooker and eat it a little bit everyday along with taking vit D. Not sure how effective it is. Will update after my next scan. I don't want to take calcium supplement for fear of UTI. I had it twice. I found this article regarding taking calcium supplementhttps://www.hopkinsmedicine.org/health/wellness-and-prevention/calcium-supplements-should-you-take-them

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@windyshores

Curvature comes from fractures resulting in lower bone density. What are your DEXA scores?

I did 5 years of letrozole and my docs did not want me on Reclast or Zometa (same med) due to other health issues. I already had pretty severe osteoporosis when I started, and three old fractures from a traumatic fall.

I did lose bone density and due to COVID was late in starting Tymlos, a bone-builder and did have some lumbar fractures.

But Tymlos has returned my bone density to pre- cancer levels in two years of treatment.

So one option is to monitor your bone density and do Tymlos later. One caution: Just as with menopause, I lost maybe 10% bone density when I started letrozole but then it levelled off.

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@windyshores I've been reading your comments and found them very informative. Have you worked in medical field? Thank you.

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