Zometa

[APK3]

Insurance denied my Xgeva shot . Was told I had to do Zometa. Looking at the potential side effects ( stomach) Im not inclined. Been dealing with ibs and gerd for years and not really wanting to go with anything that will increase that situation. I've read that Zometa does nothing to prevent SRE events in several publications if you're still hormone sensitive which I am. So what's the upside of that? I asked my MO for a Dexa scan and was told it's irrelevant as I have mets to the spine and SOC dictates the use of these agents now. I'm several months away from Medicare and really don't want to fork over 3k a month for Xgeva. I asked if I could do Xgeva every 3 months and just pay out of pocket and was told you need it monthly. Will I be screwing myself by waiting for Medicare? I'm pretty much stuck with the current MO as I'm getting ready for my 3rd chemo infusion in a couple of days at his clinic. Just don't understand the Dexa denial and the push of the Zometa if it's not going prevent SRE's. Any thoughts on this? Thx

[mrscruffy]

I am on Zometa after Dex scan showed Ostopenia. I get an infusion and am sick the next day with flu like symptoms. Just don't plan anything for the next day

[APK3 in reply to mrscruffy]

Thank you for your reply mrscruffy.

[Jeffdanger in reply to mrscruffy]

My first Zometa treatment was awful-102° fever, nausea and aches and pains for two days. Second time I drank like a quart of water before and after infusion and a lot throughout the rest of the day and the side effects were minimal-kind of like a flu shot just a little achy. Have you tried that? Convinced my MO I don't need that right now anyway so now off of it.

[Maxone73]

zero side effects for me, I know that denosumab could be used at later stage

[APK3 in reply to Maxone73]

Thank you for your reply Maxone.

[APK3 in reply to APK3]

Maxone when did you start Zometa? Were you doing your Chemo infusion along with your Zometa infusions or after completing your chemo?

[Hidden]

My MO did the same thing to me: No DEXA scan, go straight to Zometa. That was 4.5 years ago. Strangely, I haven't experienced much in the way of side effects.

[APK3 in reply to Hidden]

Thanks Mug for your response.

[TommyCarz2 in reply to Hidden]

Same here, NEVER a dexa scan, straight to Xgeva upon diagnosis five years ago. I recently went from monthly injections to every 3 months. Within 7 months I was diagnosed (by my P C) who ordered an x-ray and my FIRST ever dexa scan) with osteopenia (-2.3) AND a compression fracture of the thoracic vertebra (T-11). I asked my MO why we never got a baseline dexa at the beginning of treatment, he said "That's NOT common practice, and wouldn't really tell us anything", Keep in mind, this is the same MO who refuses to even entertain discussion of the e2 estrogen transdermal patch for increased bone mineral density, and overall bone health. He says, "too many cardio risks" , I think he's living back in the 1960's, when pca was treated with ORAL ESTROGEN.

[dhccpa in reply to TommyCarz2]

Sounds like it! Unfortunately, I fear tha's closer to the norm than the exception, especially if you changed it to say he's living 15 years in the past.

[Kaliber]

I’ve had over 50 Zometa infusions and never had stomach issues. Most people have no or few side effects for a couple days after the infusion. Severe SEs happen in a small percent of people, but I’ve not heard of stomach issues.

If your bone scan shows you need Zometa then by all means at least try it. It’ll be very important to you to repair and reverse that met bone damage. It’s an important drug for guys like us.

❤️❤️❤️

[APK3 in reply to Kaliber]

Thank you Kaliper your response was very helpful.

[TommyCarz2]

I got a call from my MO's office informing me of the same thing. I researched Zometa, and came to the same conclusion as you. I contacted my MO's office via the patient portal, and they reached out to my insurance company and got Xgeva approved for another year. I'm every 3 months on Xgeva, down from the 28 day cycle I did for a few years. I've also developed some seriously receding gums while on all these meds, and Zometa is much more likely to promote ONJ than Xgeva . If you're already on Xgeva, ask your dr to reach out to your insurance.

Good luck!

[APK3 in reply to TommyCarz2]

I did indeed have the MO's office contact the insurance provider .Got a big fat no. They said they would only cover if I had a reaction or Kidney problems with the Zometa. All about the Benjamins. Thanks for your response.

[dentaltwin in reply to TommyCarz2]

This is just one paper. I had heard that the potential for ONJ for denosumab was pretty similar to that of zolendranate . But this paper suggests that denosumab has a HIGHER potential for ONJ. It also claims a lower rate of "skeletal events" and renal toxicity:

ncbi.nlm.nih.gov/pmc/articl...

I have heard that denesumab has a much shorter half-life in the bone, so it can be withdrawn more quickly if problems do develop.

Disclosure: I am a retired dentist. I have never taken either drug myself. My dad was on Zometa for a few years, and he never had any symptoms he reported to me, and never had ONJ. It did greatly reduce the size of his osseous metastases.

[APK3 in reply to dentaltwin]

Appreciate your response.

[MomOfMaisy in reply to dentaltwin]

I also read that there are more issues of ONJ with Xgeva than Zometa. Right now my husband is waiting to meet with a dental specialist to excise a tooth and get a dental implant. As you know, it can be a long process. He can’t go on Zometa until it’s finished. And frankly, my husband is afraid to take it for fear of ONJ. His DEXA bone density and Vitamin D are both normal. He had two small mets to his ribs and one on his scapula at diagnosis with PSMA in late November. He just finished 28 IMRT radiation treatments and his PSA is undetectable. Responding well to Zytiga, prednisone and Eligard with minimal side effects. Hopefully, he won’t have any issues because he can’t take Zometa right now.

[dentaltwin in reply to MomOfMaisy]

All I can say in that regard is that on bone scan, many of my dad's metastases basically disappeared after going on Zometa.

As far as the implants are concerned, many surgeons are compressing the process. I was cautious by nature. Most of my patients had implants placed, and the tissue closed over the fixtures to allow for bone healing under healed mucosa. But as time has gone by, surgeons have often opted for immediate exposure of the heads of the implants. Some have gone so far as to restore them shortly after placement, and some have even loaded these implants (by allowing the teeth being replaced to actually be in function. I'm not totally comfortable with this, but surgeons may well differ. You may want to discuss whether the fixtures could be exposed immediately. This will minimize the time frame during which the bone would be subject to trauma, and possibly allow for earlier start to anti-resorptive therapy.

Good luck!

[Atlpapa]

I would think a DEXA scan should be done so you have a baseline and know if treatment is helping or at least preventing bone density from getting worse. I’ve been on 3 month zometa infusions for 3 years with no side effects. I had DEXA scan shortly after dx and started zometa a fee months later. and one DEXA after 2 years on zometa. First one was May 2020: lumbar spine -3.1, left hip -2.3 second scan Jan 2023: lumbar spine -2.9, right femoral neck -2.1 so there was some improvement

[MtnMan50]

Same. Insurance denied Xgeva and I had my first Zometa infusion on Wednesday. No side effects so far! I’m currently doing chemo along with Zometa.

[APK3 in reply to MtnMan50]

Thanks for your reply 50. So do you get the Zometa the same day since you already have an IV? Or is that a separate deal all together?

[Maxone73 in reply to APK3]

Did them in sequence, cortisone, docetaxel and then zometa when I was still doing chemo…3 hours IVs

[MtnMan50 in reply to APK3]

I get it done a separate day.

[FigureGround]

I was on Zometa for about 18 mos, with a once a month infusion. Same thing, no baseline Dexa scan. Later, Dexa scan showed osteopenia. Then I was diagnosed with ONJ. Discontinued Zometa (never had a problem with side effects, except the ONJ). Changed MOs. Now on estradiol gel. Dexa scan coming up in April. We'll see.

[TommyCarz2 in reply to FigureGround]

Are you in the United States? If so, who is your Dr. and where, as I can't get my M O to even hear talk of e2 trans

dermal patch

[FigureGround in reply to TommyCarz2]

Sorry Tommy, I only just saw your question. Yes, I am in the US, in Colo. My doctor is Dr Britt at Rocky Mountain Cancer Center in Boulder. He agreed to the estradiol gel (1 %) once I sent him a paper on the subject.

[MomOfMaisy in reply to FigureGround]

I had heard ONJ can be horrible to deal with. Has this been your case?

[FigureGround in reply to MomOfMaisy]

It hasn't been the case so far. I had a small bone spur protruding from the gum. Dentist and then oral surgeon diagnosed it as ONJ. The oral surgeon, after prescribing some heavy-duty mouthwash for a month or 2, was able to just pull out the spur with tweezers. I didn't feel a thing. He seemed to think I was done with ONJ. Then another spur showed up much like the first one, and I went through the same mouthwash procedure, and returned to the doc in about 6 wks. By that time the spur had fallen out on its own. So that was probably 6 mos ago, and I think I'm ok. But the short answer to your question is, "I don't know." At any rate, I am no longer taking bisphosphonates (e.g. Zometa). The oral surgeon tells me it can take 10 years to get that stuff out of your system.