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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.

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brighterdays | @brighterdays | Apr 25 4:24pm
In reply to @gently "brighterdays, According to this bone specialist who ran the clinical trials on reclast about 22% of..." + (show)
@gently

brighterdays,
According to this bone specialist who ran the clinical trials on reclast about 22% of people on the 5mg dose of zolendronate by infusion have an intense adverse reaction. I'm just reprinting his advice on administration. I don't know your dose but would assume 4mg. Reclast is 5mg.

"I have prescribed a lot of Reclast (zoledronic acid), which to my knowledge is always administered in an infusion center, and not in a physician's office.

My strong recommendation based on my knowledge of bisphosphonates (given that I helped to develop three of them, and treated 13,000 patients in phase 3 trials with them) is to have the infusion center dilute the 5 mg of zoledronic that comes in 100 mL of D5W into 500 mL of NS, and infuse the now 600 mL over 60 minutes. Making the drug more dilute and administering it more slowly significantly improves the renal safety for N-containing bisphosphonates.

I also strongly recommend that the infusion nurses give the patient 650 mg of acetaminophen (Tylenol) at the time of the infusion, and that the patient take that same dose with dinner and at bedtime the day of the infusion, with all 3 meals and at bedtime the day after the infusion, and a final (7th) dose of acetaminophen with breakfast the 2nd morning after the infusion. These 8 doses total of Tylenol reduce the chance of a symptomatic APR (Acute Phase Reaction) from 22% to < 1%.
Best, endodoc"
The innovative suggestions of lower dosing are, in my thinking, a better bet. But your doctor may be reluctant to agree, wanting to give you the best protection against bone metastasis.
There is the additional risk you mention of osteonecrosis and atypical femur fractures.
If you haven't had the tumor tested for it's unique mutations, you should. It can give you a very good idea of where those mutations are likely to metastasize. You should have that information in any case. It doesn't require a new biopsy because that material is held by law.

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Thank you for so much details. I will be sure to communicate with my care team if I do start on it.
As for the tumor mutations, is there a specific name for the testing? I have never heard of it but sounds helpful in deciding what treatments could actually help.

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gently | @gently | Apr 25 5:17pm
In reply to @brighterdays "Thank you for so much details. I will be sure to communicate with my care team..." + (show)
@brighterdays

Thank you for so much details. I will be sure to communicate with my care team if I do start on it.
As for the tumor mutations, is there a specific name for the testing? I have never heard of it but sounds helpful in deciding what treatments could actually help.

Jump to this post

It is called somatic testing.
I didn't know about it until the doctor asked if I wanted testing. It was at a teaching hospital and all the doctors milling about were telling me and each other how useless the test was. No one knew where to send the sample and it set on the shelf until my treatment was over. It helped me because I was refusing chemotherapy and kept pressuring me to use chemo. I'd say sure but I'm waiting for the genetics.
This is what I got. the mutation number and letter., the area where each mutation was likely to metastasize, a list of chemotherapeutic agents that were effective against each mutation, a list of chemotherapeutics in clinical trials that I could enter.
I found out that non of the three chemotherapeutic agents I was pressured to take were effective against my mutations.
I hope your care team is receptive.

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sally484 | @sally484 | Apr 28 8:38am

I am on Zometa and get it about once every 3 or 4 months. The only problem I have had is it is shifting my teeth. I also have crowns and my lower teeth have gone crooked. I wasn't sure what caused this, but it probably is the Zometa. I will be asking my Dr. next time I go!

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brighterdays | @brighterdays | Apr 28 12:57pm

After 7 months of sitting on it, I opted out of bisphosphonates. Saw a second opinion and the doctor ran the Predict test for me which my current doctor did not. My 10 year benefit was 1%.
A couple of weeks after my decision I had a toothache and saw my dentist. I had hidden necrosis underneath my molar from wear and tear. Who knows what else is going on with my teeth. So glad I did not start on Zometa!

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