Zometa, ONJ, when is it really necessary?

@semurray no Tymlos is not a bisphosphonate. It is an anabolic bone builder that works through the parathyroid, similar to Forteo. You inject it every day, using a pen with clicks that indicate dosage. I am very sensitive to meds and tried for years to get on an osteoporosis med (I have vertebral fractures, after cancer meds). I was able to do Tymlos because the dose is adjustable. I started with two clicks and worked up slowly. Full dose is 8 clicks and I mostly did 6 or 7. I had excellent gains.

@myoga thank you but no I don't work in the medical field. I have several health issues as does one of my kids. On this forum we try to give information based on our own experience, and not actual medical advice!

I was diagnosed with MBC in my sternum ( destroying the bone) , liver, lymph nodes in Jan '24
On Letrozole and palbociclib.
Last week got my 1st infusion of Zometa....48 hrs later BOOM, both knees ( with osteoarthritis) blew up to double in size and I could not walk! They prescribed pain medication over the phone, they couldn't believe this was caused by Zometa!
Today is my 3rd day since getting around in a rented wheel chair and I can now get up from a chair without hubby's help. Still very swollen knees that can't straighten out yet. I'm very hesitant to try Zometa again in 3 months. Did anyone else have a strong reaction to Zometa?

Can you do Reclast in smaller doses more frequently (or Zometa, they are the same drug but different dosing). I am doing 1mg (20% dose) but every 3 months- for bones so not sure it will work with MBC. I had BC but not MBC.

Thanks! I'll ask my oncologist if that's a suitable option for me. That would be great.

@talldutchy also hydrate well (electrolyte water is best or Gatorade) the day before, day of and day after. Ask for a slow infusion, Take tylenol day night before, day of (x3) and day after. That's been posted by others and recommended by my doc too.

Had a Zometa infusion 3 months after radiation ended and really no problems. Second infusion in Feb 2023 and a week later started with upper thigh leg pain on my infusion side of body. Because I so frequently have chiropractic pains, it took me 4 months to realize it was a textbook symptom of Zometa. I did not walk for pleasure or exercise for months due to the pain. I declined to continue on any similar infusion after that.

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.

For cancer, I don't know if the lower dose is okay. For osteoporosis, I am having a 1 mg dose (20%) but more often, every three months. If I tolerate it well I can go up on dose and down in time interval.

I have also had breast cancer- 9 years ago- so am also concerned with the effectiveness with cancer of a low dose so thanks for raising this. I will ask my doctor.

My doctors are concerned about my kidneys (and were concerned about my afib) with Reclast and want the lower dose. I did not request it but am grateful.

The info posted by @gently is extremely helpful. I have it in my Google Docs to share with my doctor!!

My MLBC to a vertebrae is MBC to bone, w/ a 2cm lesion on Vertebra discovered in12/23. Zometa was suggested to me even though the scan in March showed no change. It appears to me it's just protocol to a certain degree. I am very healthy except for having had crummy misdiagnosis and substandard surgeries for LBC in Florida since 2012. So I have had no chemo, some radiation after I found a tumor in left armpit (all BC was in left breast only, but had double Mas.
I am estrogen positive so take low dose Anastrozole since 1/23 and I take very good Bone Desnsity natural Pill by Jarrow along w/ there D3 that has K in it....and other holistics. I feel fine, and questioned the Zometa --PA said it was to avoid bone fractures in the future. Im 62.
I have a lot of dental work and had oral bone & gum issues for a long time. So I am worried about the ONJ & see Dental Specialist for a consult on my teeth/bone health. I feel if I eat very healthy which I have bascially , but will be even more vigilant w/ good calcium, etc. supplements and foods....I can monitor my status as planned every 3 mos.

I am a Zometa advocate, but believe me, I can appreciate your concerns about it. Did you get an opinion from an oncologist? (as opposed to a general medicine PA) ? The main reason I took Zometa was not for bone strength (I am a milk addict) but as a tumor suppresant (prescribed by Dana Farber right after I completed dose dense chemo and radiation for a period of 6 months). I also had LBC (stage IIIc), dxed in 2019 at age 69. Now my teeth are literally breaking and falling out (they suspect from the chemo) and NO dentist will touch me. Having said that, I had to have to chemo, so it was a matter of the devil you know and the one you don't. So I understand your concerns. That's why making these treatment decisions are such a personal matter. I also take Anastrazole, with little side effects except for very dry hair.