Zometa side effects
Comments
-
Well, no fever or chills from the Zometa (4th infursion) this time, and not really a lot of body aches either (yes!), but I am super tired/lethargic/exhausted - notably more than the usual. I also developed a terrible stomachache/heartburn and a headache beginning yesterday evening. I've never had such bad stomach pains after this, but it could also be because my friend and I went and got a very delicious but very spicy Indian lunch after my infusion. Probably a combo of the Zometa, Verzenio, and lunch. I couldn't sleep a good part of the night because my stomach pain was so bad. No matter how bad my side effects from these drugs, etc. can get, I've always been able to sleep, so the insomnia was new for me. Also when I got up to use the bathroom in the middle of the night I was suddenly lightheaded and off balance; had to steady myself by touching walls and countertop, etc. Surprising and scary. I looked it up and the stomachache, extra tiredness, headache, and dizziness can all be from the Zometa. Feeling a little bit better this morning though after being up and having something to eat; considering a small walk, as it is really nice outside right now. Overall not too bad so far, but I'm still waiting for that "no more side effects" effect that so many say happens after the first infusion. Oh well.
1 -
After saying that I don’t have side effects from Zometa, I was hit with a bout of fatigue yesterday. Still dragged myself to the swimming pool and was even more tired after that. Got a good night’s sleep and feel better today. Sorry about the insomnia @threetree . Been there many times
2 -
@threetree happy to hear that you didn't have the usual terrible side effects! How is your stomach now? And headache? Did that go away? And is the insomnia over? I hope so, that is the worst. Overall it sounds like a much better experience for you than in the past!
@AJ Hope your fatigue is wearing off. I had that too but was relieved to have that rather than all of the other side effects.
I have a feeling that each time will be different for me. 3 months until next visit….
2 -
Marcials1- Thanks for the good wishes! No, it wasn't as bad as the first one for sure, but I'm beginning to think I might be one of those people who gets at least a "mild" reaction every time. The insomnia did go away after two nights, thank goodness. My stomach got better, but it is not "normal" yet. Also have a sore throat, mild frontal headache and sore eyes; continue to be extra tired/fatigued. Today, I'm noticing extra tight and crampy muscles, so am wondering about my calcium levels. Zometa sucks the calcium right out. They give it to people to lower their calcium levels when they have hypercalcemia! So many paradoxes with this stuff. It's supposed to help you not have fractures, but it causes fractures and rots your jaw. You need calcium for strong bones, but it depletes a lot of your calcium. Crazy. My calcium levels were already just below the normal range the morning I got the infusion, so I'm thinking that might be the cause of my current muscle problems. I'm trying to both supplement and get calcium from food today. I usually just try to get it from food, but … Well, at least I had no fever and only minor chills. I see the onc on Thursday, so I'm going to ask him about some of this. I really do think this is a drug that you have to really think about taking, because it is very difficult to see just how the benefits outweigh the risks with this one. I'm just so glad that you seem to be doing OK with this, and didn't get any of these problems with your first infusion. I truly hope your string of good luck with Zometa continues!
0 -
I had my second infusion of Zometa this morning, and I feel better than I did after the first infusion a few months ago. I took a Claritin on the advice of the infusion nurse, and that may really be helping.
0 -
Since I keep having reactions to the Zometa, my oncologist said that next time they could give me a little dexamethasone with it if I want. I'll have to think about that one, as steroids and I have never really gotten along either. I still have my doubts about just how worth it these bisphosphonates really are.
0 -
@threetree glad the insomnia went away. For me personally I think that is the hardest to deal with. None is easy though that's for sure. And like you said it is frustrating at best that Zometa is supposed to help you not have fractures but it may cause fractures. I'm curious - what did your oncologist say about the seeing the benefits? Can it actually be determined that it is indeed helping? I'm not 100% about taking it again. I have an oncologist appointment in about 2 weeks and I'm going to drill her for answers and Zometa results is on the list! And how are you feeling now? Any lingering after effects? I hope you are feeling your best possible!
1 -
@tougholdcrow Glad to hear your Zometa infusion went well! Hope your next goes just as well. Did you take a Tylenol before and did you get fluids with the infusion?
0 -
@intolight How are you feeling on the 50mg? I hope you feel relief and can continue on it for a long time. Been thinking about you and hope you are feeling much better. Cooking yet?
0 -
@marcials1 My new dosage of meds hasn't arrived yet so I am still taking the 100mg. I woke this morning with a flaming UTI and am waiting for my video urgent care visit to start. I have never had this pain this bad!
1 -
@intolight I'm so sorry! They sure are taking their time getting your new dosage to you. I'm hoping UTI is relieved as soon as absolutely possible! Let us know how you are doing when you can.
1 -
@marcials1 I only took Claritin. I was a bit tired for three days, but it was all very manageable.
0 -
I used to think Claritin was great stuff and I got a lot of benefit from it. Once I started with anti-estrogens (letrozole Jan 2020, fulvestrant May 2023), I find that it dries me up terribly, and it begins shortly after taking it. Since we are supposed to be very hydrated when we get the Zometa, I haven't tried that option, because I find it so very dehydrating. I know many others seem to get good benefits.
0 -
I took one Tylenol for the Zometa and had fluids and was fine. But have been taking Claritin on and off for 3 weeks for allergy/sinus headaches and I agree they dry me up terrible too. Beats the headaches though. I had an MRI to see if skull mets were growing but they are not. So headaches supposedly not related. I'll go with the allergy/sinus! Hope you all are doing well.
1 -
I don't take the Claritan but I do ask them for a slower drip. I have been on Zometa for eight years now and do okay with it. I heard doing the slow drip helps but that was eight years ago and I don't remember who said it, but I have done it for all these years.
0 -
Zometa two weeks ago and just started feeling better yesterday morning, but then had to get my Faslodex shots in the afternoon. The nurse told me I'm not the only one who has such a rough time with the Zometa. She said it's real individual and that some can't deal with it at all. Back to being tired and pretty wiped out. Tried my walk this morning and I could really tell the difference with the fatigue. Usually go for about 45 minutes, but only did about 30 this morning. We've got some new heat, humidity, and wildfire smoke to deal with though, and that might be a notable part of my problem today.
Marcials1, I think you are fortunate to be having the fairly good experience with Zometa. I sure hope it stays that way for you!
0 -
@threetree Just curious did you find out if there is a way to know that the Zometa is worth the nasty after effects? I think we had talked about trying to find out since it is so hard to deal with for so many. I am willing to try again since my first was not so bad but I am going to ask my MO next week if there is a way to see if it is actually helping or possibly hurting. Since it is part of the typical protocol I just wonder if it is really worth all the hassle and extra poison in our bodies. I hope you get back to your 45 minute walk - that is great!
1 -
@intolight Wow 8 years!? That is encouraging. I did the longer drip also and think that is a big part of what helped me. That and the fluids for one entire hour. Of course they don't offer that and I had to ask for it but that's ok.
0 -
I just had my third zometa infusion. The first two were three months apart about a year and a half ago. First one I had flu symptoms and fatigue for about a week.. then three months later no real flu symptoms.. but I got sick with every cold flu and covid afterward.. and not sure if it was a contributor but I decided to wait a while.. I have had very bad side effects from most meds.. pancreatitis, anaphylactic type ones etc.
This time.. it was somewhat okay for about four days.. but after day five I got a muscle spasm in my neck, pain in my toes like gout, a pain in my gallbladder or kidney area, pain in ribs.. and a very bad taste in my mouth which as gone on for about five days now. I have been taking Tylenol and I have to keep drinking water to keep my mouth feeling okay. Help. Is this going to go away? I have taken some vitamin d.. I don't like to take calcium but wondering if it will help. and any other suggestions or words of wisdom would be helpful. I am on day 11
2021. Stage III invasive ductal carcinoma with 8-16 nodes. ER/PR positive her2 negative. 24 rounds of radiation and 8 chemotherapy. Verzenio on and off for a year. Letrozole and.. now the third zometa1 -
@jakmac I've had three infusions so far with no major side effects other than mild chills and fatigue after the first one. But, I have heard that side effects could show up at any point, whatever number of infusions you've previously had. Your side effects sound like they are worth discussing with a cancer centre patient support team if you have one, or a nurse who deals with side effects.
0 -
@jakmac I agree with doodler. Definitely check with someone in your onc office. I have been taking Zometa every three months for over eight years and have only mild SEs. I do get achey like the flu and fatigue for a few days, but otherwise it is tolerable. I also ask them to slow the drip to 30 minutes instead of 15. I know some people also take Claritan starting the day before but I don't feel the need. We are all different so please ask.
0 -
jakmac - I've had 3 infusions. I reacted strongly with fever and chills, etc. for about a week after the first one. No fever, but some chills and lots of body aches for a good week or so after the 2nd, and again with the third, very mild chills, no fever, but lots of body aches for several days. For the first and second ones, I had it drawn out for 45 minutes, and then for the 3rd, I had it drawn out for 45 minutes and had fluids also. I still wound up with all the body aches for almost 2 weeks. The oncologist has said that next time (sometime in October) they could also add a small amount of dexamethasone if I'd like. I'm not crazy about steroids at all, so right now, I'm leaning against it, but it is one more thing you might be able to ask for, along with an extended drip and fluids. I haven't tried Claritin, because it dries me up so quickly; but like Intolight suggested, many others do take Claritin day before, day of, and day after, and they say it helps. Try these suggestions from us all and do speak with your oncologist about the whole thing. Good luck!
0 -
@jakmac I agree with all of the ladies who responded! I have only had one Zometa infusion so far and am due for one in October. I am typically affected by any side effects that come with these meds we all take. But I did follow all the suggestions that I had been given — I took a Tylenol about an hour before my infusion, drank tons of water, had the drip extended to 30 minutes vs 15 minutes, and had fluids which lasted for an hour. So half hour after the Zometa I had another half hour of fluids. My only side effect was achy muscles a few days later that lasted a few days. Like we've been told by those who have multiple infusions, some times the side effects are worse than others and some people have less and less each time. I had headaches a week or two after the infusion also and took Claritin for a few days. I have decided for myself that if I ever have severe side effects I will not continue with the Zometa infusions. I have not been convinced yet that they are necessary for everyone and have not been offered any evidence that they work. I have asked for some kind of evidence to show that they work and there is no such thing. Again, this is just for myself and in no way a suggestion to anyone. We all deal with this crazy disease in the way that works best for us. Good luck to you and let us know how you are doing!
1 -
Thank you for everyone that responded. I wish I had gone in for some bloodwork this week. It really looks like the side effects I had were aligned with low calcium. So, if they persist I am going to get some more bloodwork. The zometa apparently takes 10 YEARS to be in your body. It is a very long lasting medication. People often don't tolerate oral zometa very well. I have good strong bones - and I know the letrozole effects on estrogen fragile bones. It really looks like it does wonder for people who have bone mets. That is not me at the moment. I have decided that this is the last one for me unless I get bone mets. I agree with the other posters.. I was told it gives me another 7% of 'relapse free chances' I can't even find that in the research. I would have liked to have another bone scan before, but I thought I would be a dutiful patient.
0 -
Due to stage 3 CKD, I'm on a lower dose of Zometa. I've had 4 infusions so far and no side effects (yet). I was on Prolia before Zometa but switched due to MM diagnosis. No side effects with Prolia either. Medical onc started me on Prolia after my bone density dropped into the osteoporosis range. I haven't been on AIs since 2010. It seems that endocrinology has a different protocol for Zometa than do oncology. Endocrinologist says once/year for osteoporosis and medical oncologist says twice/year. I'm following what MO says rather than endocrinologist. I also have elevated calcium levels. It's always something, but thankfully I"m NED and hope to stay that way for a long time.
All the best to you.
0 -
jakmac- It's my understanding that Zometa can significantly lower your calcium levels, so you might have had a drop in them, after the Zometa infusion. It's one of those ironies about Zometa that don't make sense to me. Zometa is supposed to strengthen our bones, yet it can cause fractures and jaw necrosis. It's supposed to help bones (that need calcium) yet it lowers our calcium levels. I was surprised to learn that they give Zometa to people with too much calcium in their blood, because of his calcium lowering effect. Like Marcials1, I have still yet to see any information that shows how this drug improves bone health and/or prevents or slows bone metastases. They just say that it does, but never show any data.
Karen 1956 - Glad to hear that Zometa (and Prolia) haven't been so bad for you. I think you are one of the lucky few who hasn't had any side effects from this drug. Keep up the good run! Also, my oncologist told me that Zometa twice a year is considered "preventative" re cancer, and that we need these every 3 month infusions to be more than preventative. I had asked him if I couldn't switch to every 6 mos, just to make all these side effects happen less often, but he said with bone mets it's not recommended. Still waiting for any data that actually shows benefit.
0 -
I get Zometa every 3 months and I was told to be sure to take calcium supplements. Luckily I have no side effects from it.
1 -
Yes, my oncologist told me to take calcium supplements while I am getting Zometa. It's a bit of a struggle for me though, because most of the supplements bother my stomach in some way. I think I have finally hit on one that isn't too bad. I also try to get as much calcium as I can in my food, so I don't have to go heavy on the supplements.
1 -
I have been reading these posts with interest. As long as I have been on Zometa I have never been told to take Calcium supplements. My calcium levels are always checked every month and before I receive my three-month infusion, but that is as far as I know. Looking through my records my calcium levels have always been good so perhaps I am getting enough through my food? I have been reading about this and you are all correct. Hmmm… I will ask my onc on my next appointment.
2 -
@threetree @intolight I have an appointment with oncologist tomorrow and I'm going to ask again about Zometa effectiveness. I have never had calcium issues, neither high nor low, before cancer or now during all treatments. So I am curious. I guess since I take Letrozole and now Zometa I am to assume that the reason my calcium remains normal is due to the Zometa infusions? My onc has not once told me to take calcium supplements; nor has she acknowledged that my calcium is normal and always has been. She really almost very has a word to say to me unless I stare at her and ask her pointedly. And I do not tolerate any supplements at all. I get everything I can through my diet. I sometimes get overwhelmed with all of this and cannot stay on top of it all and sometimes I want to dig in further and understand and control all of it!
@karen1956 Good for you being NED! I wonder if that will ever happen with me.
Hope you are all doing well this week.
1
