Zometa Infusions — your experience?

Posted by monimoa @monimoa, Jul 6 1:51pm

I am now a little over one year from the end of chemo, radiation and surgery, and one year into taking an AI. I’m in my early 50s and chemo put me into osteopenia. In response to the bone loss, my oncologist recommended Zometa. After being initially put off by the list of risks, I eventually agreed to my first infusion. It was administered 1.5 weeks ago.

I’m noticing that the side effects of the infusion are different from what a few reputable medical websites report and from what my oncologist said I should expect. I’m wondering if my case is unusual or if my experience is pretty common.

For instance, I was told that the infusion would cause flu-like symptoms for 3 days. It did. No surprise. What I was not expecting is the pain that started on Day 5. The type and location of the bone pain changes every 2-3 days, and I can’t shake the low-grade fever. I’ve had two instances so far with my blood pressure getting too low and I’ve almost fainted (I’m not on any BP meds and my numbers are always “normal”).

Those of you have had Zometa treatments every 6 months—what’s been your experience?
How long might it be until I feel better again?
Is this what all Zometa infusions will feel like in the future?
Any Zometa life-hacks you’d recommend?

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@monimoa so you are not on an aromatase inhibitor? Then maybe you could talk to an endocrinologist. Your bone density may be stable and many docs are not medicating osteopenia.

Are you done with menopause. If you are in your early 50's I wonder if the chemo or menopause caused your bone density to change.

Rcclast is used often for osteoporosis. Same ingredient, a little diffferent dosing per ml. You could also try oral bisphosphonates like Fosamax unless you have GERD.

For those of us with osteoporosis, bone builders like Tymlos, Forteo and Evenity are better to do first than the anti-resorptives like Zometa, Reclast or Fosamax , or Prolia.

I would try to ascertain whether menopause is the main culprit in your bone loss, which is not serious as yet, and if bone density has stabilized. In my experience it dipped a lot at menopause and then the loss was much gentler. You may be able to use more holistic methods for now. I am pro-medication for osteoporosis but seems you are not there yet.

Zometa is used for cancer patients and (like Reclast) might have some anti-cancer properties. is that why your doctor prescribed it?

Finally, a tip: My doc is aware of my various health issues and sensitivities to meds, and prescribed Reclast as a 20% dose, an hour IV hydration and slow infusion over an hour. I had a fever for 5 days. In three months I do it again. With your reaction, though, I am hoping you can use holistic approaches for awhile.

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Hi -- I had Zometa infusions which started about 1 month after my last radiation session. I had Stage IIIb ILC, with a modified L mastectomy, 10/16 nodes removed and diseased. When the oncologist at DF said they were finding that Zometa was not only for bone strength, but possible tumor suppression, I went for it. First time I felt like I was hit by a truck. Further infusions had no side effects. It is extremely important (and they don't always tell you this) to be fully hydrated before and for days after the infusion. Makes all the difference. I had already had a full course of dose dense AC/Taxol chemo treatments, and 6 weeks of radiation so I wasn't about to turn anything down at that point. The chemo raised havoc with my teeth, and it was very difficult finding a dentist locally to treat a post Zometa patient because of the possible side effect of jaw necrosis. Finally I found a hospital related dental facility in Boston to do the extractions, suggest next steps for dental restoration and conduct surveillance visits for necrosis. I am now 74 (was 69 at diagnosis). Even with all this stuff with the teeth, I don't think I would have said "no" even if I knew all the complications with Zometa. It is definitely a risk/benefit decision. I am also on an AI (total # of years prescribed: 10). General health, exercise and diet are key to success with any treatment, but I think esp. with Zometa

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@mdr3

Hi -- I had Zometa infusions which started about 1 month after my last radiation session. I had Stage IIIb ILC, with a modified L mastectomy, 10/16 nodes removed and diseased. When the oncologist at DF said they were finding that Zometa was not only for bone strength, but possible tumor suppression, I went for it. First time I felt like I was hit by a truck. Further infusions had no side effects. It is extremely important (and they don't always tell you this) to be fully hydrated before and for days after the infusion. Makes all the difference. I had already had a full course of dose dense AC/Taxol chemo treatments, and 6 weeks of radiation so I wasn't about to turn anything down at that point. The chemo raised havoc with my teeth, and it was very difficult finding a dentist locally to treat a post Zometa patient because of the possible side effect of jaw necrosis. Finally I found a hospital related dental facility in Boston to do the extractions, suggest next steps for dental restoration and conduct surveillance visits for necrosis. I am now 74 (was 69 at diagnosis). Even with all this stuff with the teeth, I don't think I would have said "no" even if I knew all the complications with Zometa. It is definitely a risk/benefit decision. I am also on an AI (total # of years prescribed: 10). General health, exercise and diet are key to success with any treatment, but I think esp. with Zometa

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@mdr3 thanks for the tip on using a hospital-related dentist.

I started Reclast well after my aromatase inhibitors but will share this: I am sensitive to meds so my doctor did a test dose of 1mg Reclast, with one hour IV hydration beforehand and the Reclast was infused extremely slowly, over one hour's time. I hydrated day before, day of and day after as well, and took tylenol. I still had a fever for 5 days. I will do another low dose in 3 months and then try to go up to 2 or3 mg. I do this kind of ramping up with many meds.

@mdr3 I was going to do 10 years of letrozole but at year 5 I did a Breast Cancer Index that told me that although I was "high risk" (5.2% with cutoff 4.7%) there was on further benefit to extended hormonal treatment. It was a yes or no on benefit. They have since changed their risk assessment score though. I was told at one point that 7 years was as good as 10 but my bones were getting worse (no Reclast due to afiib at that time) so I stopped at 5.

I get that you want to do the maximum treatment possible and admire your fortitude!

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I am taking Reclast once a year infusion instead. Maybe you could ask for that instead of the Zometa infusions.

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I also get Zometa infusions about every 4 to 6 months. Here's my problem.................it has affected my jaw and my teeth are moving. My bottom teeth (in front) are now completely crooked and my molars on the top hit my tongue when I talk. By the time I figured it out, they had already shifted. My teeth have always been straight and I hate this! So, now I'm looking into Invisalign.

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Hello @monimoa I am sorry you feel like a truck hit you. I also felt this way the first time, the second time was easier and the third time I went back to work after and felt mostly fine.
There are risks but like @mdr3 I felt like the benefit was worth the risk.
I did require a bad dental extraction, luckily for me I had not had my infusion on time due to the pandemic, and I could put off the next one as well. Since this tooth cracked lengthwise it really couldn’t wait. I crossed my fingers and went for it. Everything came out fine.
My teeth did not move with zometa, and after the first couple of infusions, the side effects were very minimal. Hang in there and good for you for doing all you can for your future health.
Have you called your doctor about the blood pressure drop, did extra hydration help at all?

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I receive the Zometa infusions every 6 months. I have had two infusions and had no issues with either. I drink a lot of water the week before the infusion and the week after. I think that helps.
Good luck and hopefully the side effects are minimal with the next infusion.

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@sally484

I also get Zometa infusions about every 4 to 6 months. Here's my problem.................it has affected my jaw and my teeth are moving. My bottom teeth (in front) are now completely crooked and my molars on the top hit my tongue when I talk. By the time I figured it out, they had already shifted. My teeth have always been straight and I hate this! So, now I'm looking into Invisalign.

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Wow---so what had the BC Drs. & DDS told you exactly was causing this severe shifting of your teeth? Is it that the jaw bone just started locking up due to severe mineralization? No one ever tells you the details!!!
I have necrosis of tissue near my horrible experiences with 2 diffrent types of rounds of radiation the last being the worst due to recurrence of BC to my arm pit twice '19 and '22
The difference in radiation in '22 was called Hypofractionated radiation so you just have 5 intense treatments to the site....,but no one told me what the really BAD side affects would be...now I have the start of sclerosis to some upper left area of my lung and there's also cell necrosis to some tissue that was radiated near my face of armpit . I have had periodontal disease and a molar extracted 7 yrs ago so I'm wary of my 2nd Zometa infusion this yr....among other worries of this Metastatic BC Bone lesion.

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@rococo325

Wow---so what had the BC Drs. & DDS told you exactly was causing this severe shifting of your teeth? Is it that the jaw bone just started locking up due to severe mineralization? No one ever tells you the details!!!
I have necrosis of tissue near my horrible experiences with 2 diffrent types of rounds of radiation the last being the worst due to recurrence of BC to my arm pit twice '19 and '22
The difference in radiation in '22 was called Hypofractionated radiation so you just have 5 intense treatments to the site....,but no one told me what the really BAD side affects would be...now I have the start of sclerosis to some upper left area of my lung and there's also cell necrosis to some tissue that was radiated near my face of armpit . I have had periodontal disease and a molar extracted 7 yrs ago so I'm wary of my 2nd Zometa infusion this yr....among other worries of this Metastatic BC Bone lesion.

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I haven't been back to my Dr. yet for my next infusion.........which I think I'll be refusing. When I see him, I'll be having a little chat and will let you know!

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@rococo325

Wow---so what had the BC Drs. & DDS told you exactly was causing this severe shifting of your teeth? Is it that the jaw bone just started locking up due to severe mineralization? No one ever tells you the details!!!
I have necrosis of tissue near my horrible experiences with 2 diffrent types of rounds of radiation the last being the worst due to recurrence of BC to my arm pit twice '19 and '22
The difference in radiation in '22 was called Hypofractionated radiation so you just have 5 intense treatments to the site....,but no one told me what the really BAD side affects would be...now I have the start of sclerosis to some upper left area of my lung and there's also cell necrosis to some tissue that was radiated near my face of armpit . I have had periodontal disease and a molar extracted 7 yrs ago so I'm wary of my 2nd Zometa infusion this yr....among other worries of this Metastatic BC Bone lesion.

Jump to this post

I haven't been back to my Dr. since I figured out what was causing my teeth to shift so when I do, I will be asking about it and will let you know.

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