Zometa side effects

Hi, I'm new to this forum. Diagnosed in July 2023 with Stage 1 grade 2 IDC HER+ right breast. Surgery was delayed when it was found that I had a low blood platelet issue during pre op bloodwork.

Finally got a lumpectomy in January for a 1.3cm tumor but had to return 2 weeks later for reexcision because the BS did not get a clean superior margin. Clean on the 2nd surgery. Lymph node negative. Right now dealing with delayed wound healing due to being on steroids to get my platelets up a 2nd time in 2 weeks for surgery and on an antibiotic.

Thankfully I have a low Onc score of 17. My risk of recurrence is low according to the radiation oncologist- 7.3% if I do nothing further, 2.2 % if just radiation, 5.3 % if no radiation and just keep taking Anastrazole which I've been on since August and tolerating well or 1.6 % if I do radiation and Anastrazole. I'm struggling to decide whether to skip radiation or do the accelerated partial breast radiation which is every other day for 5 days. My MO recommended Zometa infusions to prevent bone loss and reduce risk of BC recurrence but I'm very worried about the side effects of that and any other biophosphonate. I'm 71 and have osteopenia. I dont want osteoporosis but are the benefits worth the risks?

I've been getting Zometa q 3 months for my bone mets for the last 4 years, and this last time was the worst! Total body joint aches, muscle pains, fatigue, GI upset (diarrhea, bloating, gas, burping). It's been 10 days and I feel it still! Usually, it's been easy. I'll have to ask if they did anything different this time, like maybe a shorter infusion time because it seemed quick. I don't usually take ibuprofen and tylenol but I've been taking daily. Getting better. Just thought I would share my experience.

I had my first Zometa shot yesterday, given over a 25 minute IV. I was pretty tired and a little nauseous when I got home. I drank plenty of water. Took Tylenol last night and slept fine. Today I feel crushing fatigue and bone pain and other aches and pains that I am able to keep under control with Tylenol Extra Strength. I managed to walk the dog. But even chemo didn't knock me out this much. I'm just reporting this so that people know they might be out of commission for at least a couple of days.

Hi @threetree -

Really sorry to hear that you are still struggling with the zometa. Have you asked your MO if it is possible to reduce the dosage? After my first infusion, they reduced my dosage and slowed it down and that seemed to help some. They also suggested I take Calcium and Claritin (not D) for a few days before and after the treatment to help try and limit bone pain.

Take Care.

For those of you who take this drug, how long after your infusion do you still notice side effects like deep aches and pains? Also, have any of you noticed any long term side effects, not onj, but more like fatigue, and muscle, joint, and bone pain, and just feeling overall like crap?

ToughOldCrow - Thanks. I know the side effect focus for Zometa is almost always on those first few days - I get BAD side effects during that time, but am beginning to wonder if some side effects continue, albeit at a lower level. Things like the body aches, low mood, fatigue, etc. I could be wrong, and it's the Faslodex at work, but I thought I'd put this issue/possibility out there, because I never hear it discussed beyond what people experience in the "acute phase". I'm just curious what people's experiences and thoughts are in this regard.

I'm new to this forum but not for myself, for my mom. She is having some problems so I'm hoping someone here can help. She had her first round of zometa and started letrozol May 25. She had really really bad side effects that night which lasted about 4 days then had a little relief but is still experiencing a lot pain in one leg from her hip down to her ankle. This leg/ankle pain has never stopped since day 1 of the infusion. She's tried tylenol, advil, aleve, gabapentin, prednisone, and meloxicam. Nothing is helping. She stopped the letrozol and that didn't help either. What could have happened and what can she do to get some relief from the leftover pain?

@threetree I am new to this forum and joined because I was wondering about longer-term side effects too. I had my first Zometa infusion six days ago and was down and out the whole next day with body aches, chills, and fatigue. The next day was better with only some chills during the night. By the following day, no aches or chills but I was exhausted and have continued to feel fatigued. I'm frustrated because my Oncology dr didn't mention any side effects beyond the first couple of days and I'm scared that I'm going to be tired for an unknown amount of time.

@threetree Hi - I was just reading through these threads because I have my first Zometa infusion Tuesday the 16th. I'm sort of dreading it but trying not to dwell on it. I plan to drink lots of water, take Tylenol and have Claritin on hand also. I did ask that they stretch out the infusion to 30 min from 15 min. I do not typically react well to medication and if there are side effects I get them! I know I've chatted with you on the Verzenio topic. Can you tell me all the meds you are on? I'm curious if I am on the same and if so will have the same prolonged side effects you get. When was your last infusion and do you feel ok at this time?

I have very little bone pain or any body aches at the moment so wondering why I would put myself thru something that is going to cause awful pain? My scans were "unremarkable" 2 weeks ago so why would I put myself thru this? Also, I have been feeling crappy for about 10 days (headache, lightheaded, nauseas) so I am even more worried about adding to that feeling.

Also does anyone know that if blood counts are low will the side effects be even worse? Do we all have low red & white counts?

Thanks for any input from anyone!

@marcials1 I’ve had one Zometa infusion and felt fine after. Maybe tired but that could be the Xeloda

Hi Marcials1 - Wishing you lots of luck next Tuesday with your first Zometa infusion! I'm only able to respond today, as I've had a week with lots of fatigue, and just not up to doing much that requires any energy at all. Not feeling "bad", just totally tired. The meds I take are fulvestrant, Verzenio, and Zometa. All of them cause unpleasant side effects for me, and like you say you are, I am very drug sensitive, and if there are side effects, I will get them. I imagine your last week or so of feeling lousy has been due to side effects of the drugs you are on already.

My first Zometa infusion was no fun whatsoever. I got it in the morning but by late afternoon/early evening I was starting to feel a bit off. By night and middle of the night, I developed bone shaking chills and terrible body aches (no fever however). It all lasted for a good three days. I couldn't remember the last time I had stayed in my pajamas all day, much less for three days in a row, but that's what I did. After the bad side effects went away, I continued to feel very tired and a little bit achy for days, but I could get out of my pajamas and basically function. My infusion was drawn out for 45 minutes at my request. I kept wondering what it would have been like if I'd only had the routine 15 minutes. Please keep in mind, that this is not everybody's experience at all, and many say that while the first one is bad, they have no trouble at all with the successive infusions.

In my case the successive infusions have not been as bad as the first, but I do have a reaction. My last one was my third and that time I had not only the 45 minute draw out, but also IV fluids too. I had no fever and only one very short and transient bout of mild chills, but I continue to have body aches and a lot of fatigue for several days after each infusion. I'm getting my next one (the fourth one) on the 25th, and I'm not looking forward to it. Every time I get one of the infusions, I say "never again", but then I do it. I have no idea if it's helping at all in any way. They just say it helps, but I'm not aware of anything noticeable.

Maybe you will really luck out and be like AJ and only experience a bit of tiredness after this first infusion, and then nothing more with the subsequent ones. That does seem to happen for a lot of people, so please don't just assume that you will have the kind of experience(s) that I and many others have had. It seems to be very individual. I really can't find any information about side effects beyond those acute first 3 days; the ones that everyone talks about. However, I am not sure that the Zometa doesn't go on and continue to add to general tiredness and body aches, along with the other drugs like fulvestrant and Verzenio. The trouble with this mess is that all these drugs cause similar and overlapping side effects and the cancer too, can cause some of these things, so there's just no way to know what is what and it drives me crazy.

I don't know how the low blood counts affect the Zometa, if at all. Yes, I think we do all have low red and white if we are on these drugs.

Again, I've got my fingers crossed that all will go very well for you and you will be one who deals with this in a very positive way with few to no side effects whatsoever.🤞 Let us all know how things go next week.

@threetree @AJ just an update to let you know my Zometa infusion went fine last week. I ate plenty for breakfast & lunch and drank lots of water before my 1:30 appointment. I did take a Tylenol about 45 minutes before the infusion and had fluids. I had to ask for the fluids which I find odd. It seems like that should be something that is just standard. But the fluids did take an hour while the Zometa took 30 minutes. I had to ask for the 30 minute versus the 15 minute infusion time. Again, seems like the 15 minute infusion with no fluids is typical in order to rush someone in and out. Like a business versus caring for someone. Sort of disgusting. So now that it is over and it went well I will go to my next one in October. The PA did explain the benefits more than anyone has ever done for me in the past so that was pretty cool. I had some minor muscle and joint aches that have not subsided but are pretty easy to deal with. Now if I could get rid of my 3 week ongoing headache. I had a brain MRI last week because of the headaches but it was stable. No growth in tumors. So that's good. My thought is that since my immune system is so low that I am now allergic to just any dust and cat dander in my house. I am constantly trying to rationalize symptoms. Oh well, that's all. Just wanted to let you know how it went. Hope all is well.

@marcials1 I’m glad your infusion went well. I’m getting mine tomorrow we seem to be on similar schedules with @threetree !

My Zometa infusion went fine. So far I don’t feel bad. A slight headache is all

Going for mine later this morning. Fluids and a 45 min draw out for the Zometa. Really hoping this will be my lucky one where I stop having reactions every time.