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Topic: Zometa - What was your experience?

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Nov 2, 2020 03:25PM

Miriandra wrote:

My last bone scan showed mid-level osteopenia, and my doc recommended Zometa. I was lucky enough that my cancer seems to have been caught by my mastectomy - no chemo or rads. I'm on anastrozole just to be safe.

Most of the other Zometa threads seem to be for very complex cases where the posters are juggling many conditions and meds. What are the experiences of people who are only undergoing Zometa? Did it lay you out for a long time, or did you barely notice? My doc warned about flu-like symptoms ( 0_0 ) for a few days, but these are often helped by taking Claratin for a few days before the treatment.

Thank you for your insights and thoughts!

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Posts 31 - 42 (42 total)

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Mar 20, 2021 01:58AM Dreamer1 wrote:

Hi, I've been on Arimidex for one year, and unfortunately my Dexa showed an alarming (more than 10%) bone loss during that time.

Bone health specialist prescribed Zometa. I'm scared of the SEs. He gave me a "Tylenol" protocol to start the morning of, but I think I will also take Claritin as others have suggested.

BUT - I absolutely hate nausea and asked for a scopolamine patch. He said he would order that if I insisted, but that he would require someone to drive me to/from (almost a deal breaker as I have gone to every treatment and every OV except day of surgery by myself).

Has anyone used a patch to prevent nausea and if so, how has that worked out?

Oncotype = 10 Dx 10/15/2019, IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- (IHC) Dx 10/31/2019, DCIS, Left, 4cm, Stage 0, Grade 2, 0/5 nodes, ER+/PR+, HER2- (IHC) Surgery 11/20/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/2/2020 Whole-breast: Breast Hormonal Therapy 2/10/2020 Arimidex (anastrozole)
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Mar 20, 2021 06:20AM KBL wrote:

Dreamer1, I don’t remember experiencing any nausea. I had lots of aches, like you would with the flu, and a slight fever. This lasted three days for me, but some only experience it for a day. I slept a lot. I’m sure others will say whether they had nausea. You could also make sure they don’t infuse it too quickly.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/27/2021 Xeloda (capecitabine)
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Mar 20, 2021 11:58AM LillyIsHere wrote:

Dreamer1, I didn't experience any nausea. Flu-like symptoms for a couple of days only. The second infusion was easier. Zometa has other benefits as well.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy
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Apr 6, 2021 11:38AM Miriandra wrote:

I had my first infusion yesterday. Based on doc's recommendation, I took a Claritin the day before and the day of. I also picked up some CBD/THC edibles for pain and/or nausea.

No nausea to speak of, just a little tummy discomfort last night. Today I am all over achy and tired. I dropped my kid off at school, ran by the grocery to pick up a few things, then came home - and I'm wiped! I'm so glad I took tomorrow off work. I'm in no shape to work on other people right now.

SickTired

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Apr 6, 2021 01:29PM edj3 wrote:

Dreamer1 I have violent nausea and vomiting with nearly all types of general ansethesia so I do get a scopolamine patch. Even with one, I've thrown up so they're not blocking everything for me but it's less than it would be without.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 18, 2021 08:12AM FGodmother wrote:

My first Zometa experience sounds a lot like many of you. I felt fine the day of, but 11 hours later, I developed chills, nausea, deep fatigue and ached everywhere. No appetite, and a bit of an acid stomach. It lasted all day. I woke up this morning feeling mostly like myself. I am still a bit sore, especially in my spine where my Mets are. I do hope only the first infusion has this kind of reaction, and next month I will have much milder SEs. I start my Ibrance tonight, then tomorrow go for rads simulation. Trying to live as normally as possible, getting into a monthly rhythm

Even Miracles take a little time. Dx 4/22/2016, IDC, Left, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 5/12/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 6/16/2016 Whole-breast: Breast Hormonal Therapy 8/3/2016 Arimidex (anastrozole) Dx 3/30/2021, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 0/3 nodes, ER+/PR+, HER2- (DUAL) Hormonal Therapy 4/2/2021 Femara (letrozole) Targeted Therapy 4/17/2021 Ibrance (palbociclib) Radiation Therapy 4/19/2021
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Apr 18, 2021 11:07AM SUPer52 wrote:

Hi Everyone,

I thought I would jump in and share my experience. About 24 hours after my first infusion, I felt slightly achy, like I might feel with a mild case of the flu. I had a low-grade fever and chills but nothing that was incapacitating. I took it easy for the day and felt back to myself again about another 24 hours later. I had no reaction my second, third, or fourth time. I am scheduled for my fifth (out of 6 planned) infusion in about two months, so I expect to feel fine after. My oncologist did say that some patients do get something like a "flu syndrome" with it, and said if that happened to me, we would consider discontinuing it. Thankfully I had no problems.

When I was in my early 40's (pre-breast cancer), my insurance approved a DXA scan due to early menopause and a history of multiple stress fractures. I went through a natural menopause at a young age, and am small boned and thin, both of which are risk factors for developing osteoporosis, combined with the fact that I really did not drink milk at all for most of my life because I just don't like it. That first DXA scan showed mild osteopenia in just one hip. Fast forward a decade later, and my second DXA scan which was ordered before starting arimidex showed osteopenia in both hips and my spine. Therefore, my oncologist proposed Zometa infusions at 6-month intervals. I just had my repeat DXA scan after being on arimidex now for just under two years (and having received 4 infusions of Zometa at 6-month intervals), and while the findings still show osteopenia, there was "significant" increase in bone density in both hips and some increase in density in my spine. So for me, the Zometa is working and has kept my bones from thinning even more while taking arimidex. I have also been better about taking calcium and D3 supplements. And to echo what someone else said previously, there is a slight protective benefit with Zometa as far as preventing mets to the bones. In my case, however, the main reason my oncologist has me receive it is because of my increased risk of developing osteoporosis while taking arimidex. If I had not already had increasing osteopenia when I first started arimidex, I probably would have waited to see how my bones were being impacted before starting Zometa.

The osteonecrosis of the jaw is definitely a concern, and I always schedule my dental checkups prior to my infusion to make sure nothing is brewing and that no dental work will be needed. I am fortunate to have a few dentists in my family. All of them have seen ONJ with patients who receive infusions of biphosphonate drugs but agree that the risk is low when the infusions are at 6-month intervals compared to patients who receive them much more frequently, and that the risk mostly is with invasive dental procedures such as implants that require healing of the jaw bone. The way they explain it to me is that the biphosphonates prevent the breakdown (and resulting buildup) of osteoclasts in the jaw, so that if infusions are frequent that process of buildup and breakdown is prevented more than it is when the drug is received at lengthy intervals. Some dental procedures, such as an implant, require healing of the jawbone as part of the process which makes those procedures riskier than others. Simple fillings are not as risky, but of course nothing is foolproof and it is always better to err on the side of caution. Like everything associated with each individual's treatment plan, the benefits of the medicine have to outweigh the risks.

"My mission in life is not merely to survive, but to thrive; and to do so with some passion, compassion, some humor, and some style." -Maya Angelou Dx 1/15/2019, DCIS/IDC, Right, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 1/23/2019 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 2/25/2019 Lumpectomy: Right Radiation Therapy 4/8/2019 Whole-breast: Breast, Chest wall Hormonal Therapy 5/11/2019 Arimidex (anastrozole)
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Apr 18, 2021 11:41PM Miriandra wrote:

About a week after my first infusion, I got up in the middle of the night to go to the bathroom. About halfway there, I suddenly felt like I was walking on the ceiling - massive vertigo attack. Fortunately, I was near a wall, and was able to stabilize myself until the feeling passed. I was still very lightheaded the next morning, but felt normal again by the evening. The following Monday (of course it happened on a weekend!) I called my oncologist's nurses' hotline. They confirmed that vertigo can be a SE, but like most of Zometa's SE's, they reduce in severity with subsequent infusions.

We'll see how it goes in 6 months!

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left
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Apr 23, 2021 11:11AM Ihatechemo wrote:

Hi,

I received 2 infusions of Zometa, 6 months apart in 2020.

First infusion: I was told to drink plenty of fluids to prepare. I drank 60 oz. of water the day before and the day of the infusion. I felt fine the day after so I did not continue fluids at that level. A fever and chills started and lasted for 4 days.

Second infusion: I started Extra Strength Tylenol in the morning and continued twice a day for 4 days. I started my 60 oz. of water a few days beore and continued for 4 days after. I had no side effects.

There is an article on this breastcancer.org site that states Prolia is another option for strengthening bones and slightly reducing breast cancer recurrance. I brought this to the attention of my oncologist and she agreed to let me switch to Prolia. I had my first shot last week. There were no side effects, no IV, no sitting in an infusion room and being reminded of my 6 chemo treatments. I got it at my primary care physician's office and was done in about 15 minutes. It's a much easier experience.

Thank you BreastCancer.org for publishing this study!!!!

Dx 12/7/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/5/2019 CMF
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May 14, 2021 12:58PM Going2BeatThis wrote:

Thank you Ihatechemo for sharing your experience with Zometa. I will definitely take your advice and take the extra strength Tylenol starting the morning of the infusion. Drinking lots of water is not an issue for me. Do it every day. That, along with drinking Bio K Plus (1/2 am and 1/2 pm), I believe is why I was NOT in the 81% who get very bad diarrhea from Verzenio.

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May 14, 2021 01:25PM Going2BeatThis wrote:

Miriandra, did the Claritin help?

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May 17, 2021 12:37PM Miriandra wrote:

Going2BeatThis, maybe? I'm not sure, since I don't know what my baseline would have been. I took it the day before, and the day of. The day after, I felt like I had a flu - achy all over and tired - but it wasn't too bad. I was able to nap a lot. The following day, I felt normal again. If I had taken it the day after too, my reaction might have been even milder. All things considered, it was probably worth it.

Dx 5/31/2019, DCIS/IDC, Left, 1cm, Stage IA, 0/1 nodes, ER+ Surgery 8/14/2019 Lymph node removal: Sentinel; Mastectomy: Left

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