Zometa - What was your experience?

Dreamer1

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?

KBL

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.

LillyIsHere

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.

Miriandra

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.

edj3

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.

FGodmother

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

SUPer52

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.

Miriandra

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!

Ihatechemo

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!!!!

Going2BeatThis

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.

Going2BeatThis

Miriandra, did the Claritin help?

Miriandra

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.

Miriandra

The day after my second Zometa infusion, the right side of my jaw was incredibly tight and sore. Osteonecrosis (AON) is super scary, so I talked to my dentist. He did a panorama x-ray, and decided it wasn't AON, but he did see a shadow on my mandible he was concerned about. So he referred me to an oral surgeon for his opinion.

The oral surgeon confirmed no AON, but after assessing my bite, determined that at some point in my past, I had dislocated my jaw. The joint capsule on my right TMJ was compromised, and he's pretty sure I no longer have an articulating disc in that joint. So now I get to add glucosamine, an anti-inflammatory, and amitriptyline to my pile of meds and supplements. But given what it could have been, I can manage.

LillyIsHere

miriandra, I have the tight and sore one side of my jaw that has created a stronger muscle on that side of the neck. This happened 6 months on letrozole and before Zometa. I went to several doctors and no one could give any explanation but my dentist told me that I am grinding my teeth at night. My theory is that the stress of living with a cancer diagnosis, worries, and a pile of anti-hormone meds have created a stressful situation that I can control during the day but at night I grind teeth and have nightmares (my husband told me about nightmares) that may have created tension on that side of jaw.

Rah2464

Lillyishere - have you tried going to a chiropractor? My dentist told me to go because my jaw was slightly misaligned. It is helpful.

Miriandra

I'd also recommend intra-oral massage. It can make a big difference releasing the pterygoid muscles in the mouth.

Be aware, there are two common approaches to intra-oral massage. Neuromuscular techniques are very aggressive and are more likely to be painful. Craniosacral techniques are much more gentle, and I find them much more effective in the long run. Ask your massage therapist which approach they use, if you find one who specializes in TMJD treatments.

LillyIsHere

rah2464, thank you. I am scheduled to see a chiropractic for my back. I have never been to a chiropractor before. Do you think I can ask for my jaw?

Rah2464

Lillyishere - yes have a thorough conversation with your chiropractor about your jaw issues and see what they suggest. My chiro (a lady who is a cancer patient herself) was very careful with my jaw manipulation and gave me instructions on massage techniques she wanted me to do at home. I think your intuition about why that side of the jaw is tight is probably spot on. We protect and hold stress where we have been "hurt" it is just a natural body defense mechanism. I have all kinds of problems on my left cancer side. Drives me bonkers.

Miriandra I am not sure which techniques my chiro used but they were not painful. I will look into the cranialsacral as well that is a wonderful point.

Another point if you have had bone strengthener treatments - let your provider know up front. They will approach your treatments more gently.