Zometa side effects
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So I had my labs, CT & body bone scan this week. Regarding the labs, my tumor markers are dropping still but they are slowing down on the drop rate. So my oncologist wants to up my Verzenio to 100mg. I'm willing to give it a try. Bone scan and CT both show no increased tumor activity but also no decrease. So I guess we do need to get a bit more aggressive. About the Zometa….the PA told me that my reason for infusions is not for calcium issues. So that is not a surprise. It is to "treat" the cancer. She said that without the Zometa, my tumors would turn soft like butter and my bones would then get weaker and crack or break. I don't know what to think about this! I have not read anything like that in all of my searching. And it still doesn't answer my questions on "doesn't Zometa sometimes cause weaker bones"? So onward we go. I'll try another round of it in a few weeks and see how it goes. I'll do my Tylenol prior, extra time on the drip and fluids added, then Claritin.
Hope everyone is doing good and enjoy your weekend.
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Marcials - Glad to see that overall, your scans and blood work look good/stable. That Zometa business continues to be a puzzler for sure. I just saw my oncologist yesterday and was going to ask him more about Zometa, but forgot. I get my next infusion on the 16th. When I asked him if I couldn't switch to every 6 mos, he said they view that as "preventative" and it's not for stage 4. Maybe that's what your PA was referring to, i.e. that Zometa is given to stage 4 the way it is, to "treat' the cancer, and not just prevent weaker bones. As we've discussed before though, I still have not seen any data/study references that say Zometa "treats" cancer or that it makes a real significant difference with osteoporosis or cancer. All I hear about Zometa and stage 4 is stuff like "we think" it helps, etc. No real evidence so far. Like you, I will continue with this for now, but I really just don't get it, and I hope I'm doing the right thing. Good luck with your next one and hope all the fluids, long infusion, Claritin, etc. help. I'm still trying to decide whether to add dexamethasone to my regimen. The onc suggested last time that I could give it a try to see if it helps with the after effects any better, but I don't like steroids either.
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I have been reading all the comments on Zometa with interest. I have been receiving Zometa every three months for over eight years now with no major issues. Two years ago I had a three-month long oral cancer meds break while I moved states and changed doctors, and I was also recovering from extreme issues from Affinitor ( we think I was allergic and it caused major lung issues.) My first scan afterwards showed stable and my new oncologist remaked that she thought the Zometa and Femara were helping to keep the cancer stable during that time. It was my first hint that Zometa did more than bone strengthening. I don't know the science behind it, but I have done well with it so perhaps I just naively keep getting it. I might ask her out of curiosity when I see her in a couple of weeks. I know she taught at a medical school for awhile so she is well-researched.
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@threetree Yes "stable" is the right word. And I am thankful for that. I'm with you on the Zometa, still a mystery to me. Because I can't get a solid answer on what exactly it is doing. Am I supposed to assume that it is working because bones are not breaking? I've only had one infusion so far and the next is on 10/18. I don't like steroids either and avoid that. But you've tried all of the other precautions, i.e. longer drip, added fluids, etc. right?
@intolight I'm glad that you've been receiving treatments for 8 years with no issues. And your oncologist saying Zometa may have kept you stable while on the break from other treatments is encouraging.
So I'll continue for now…and I will ask at the next weekly zoom group I joined. They seem to have some info I cannot find elsewhere. If either of you find any other information please let me know and I'll do the same. Thank you!
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what I’ve heard about Zometa is that it changes the environment of the bones so that the cancer has a hard time existing in this environment. It doesn’t treat the cancer specifically but it provides an environment that is not friendly to the cancer cells.
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AJ - Do you know where that info came from? Did a Dr. tell you this, did you read it anywhere, etc.? It's just so hard to find information about it. Your understanding of it all does offer some new perspective. Thanks.
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My MO also told me this, that Zometa changes the microenvironment of the bones and makes them inhospitable to cancer. I will have my third infusion after Christmas. Here is a summary from the NIH National Library of Medicine:
"In addition, ZA [zoledronic acid aka Zometa] has been demonstrated to exhibit antitumour effect. Direct and indirect mechanisms of anti-tumour effect have been postulated and at many times proven. Evidence exists that ZA antitumour effect is mediated through inhibition of tumour cells proliferation, induction of apoptosis, synergistic/additive to inhibitory effect of cytotoxic agents, inhibition of angiogenesis, decrease tumour cells adhesion to bone, decrease tumour cells invasion and migration, disorganization of cell cytoskeleton and activation of specific cellular antitumour immune response. There is also clinical evidence from clinical trials that ZA improved long term survival outcome in cancer patients with and without bone metastases."
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Thank you, Maggie. That's more than I've seen or been told about before.
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An oncologist told us at a support group meeting at my hospital.
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Thank you, AJ. That's a big help.
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Thank you @AJ that makes more sense than anything else I've heard.That makes it easier to get comfortable with going to my next infusion. And thanks for the additional information @maggiehopley . I still am a bit nervous about the osteonecrosis of the jaw because I have issues with teeth. I never did before, just started after a dentist visit before going on Zometa. They filled cavities and they have been painful ever since. But I know the chances of it are pretty low. Thanks again.
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I'm also still wondering about the amount of benefit that Zometa confers. Even if it does change the microenvironment to one that is less favorable to spread in the bone, I wonder how much? Is this one of those things that gives you a 3% benefit, 30%, or 75%? I am not able myself to cite what I've read/heard, but I seem to remember reading that the improvement, if there is any, was along the level of something like 3%. For all the trouble this drug can cause, that's not very much benefit, although it can be argued that every little bit counts. I also seem to remember reading that Zomet'as benefits re spread in bones was "controversial" and that it wasn't necessarily an accepted given. Again, I cannot cite where I read that; just "somewhere on the internet". Those are the things I've been trying to find out more about, but am having a hard time finding good solid info and consensus among providers/researchers, etc. I'd sure like all these supposed benefits to be true - especially given the extreme downsides of this drug, like osteonecrosis, the post infusion side effects, and the fact that it can actually cause fractures, but all the info out there still just seems so sparse and vague. I did really appreciate hearing what Maggie and AJ had heard though, because that was new and positive for me.
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marcials1- I had pretty good teeth before I started treatment. I had braces and some fillings as a child, but no dental work other than cleanings in over 30 years. Well, Paclitaxel loosened my teeth and now they are very crooked and my bite is off, so I am damaging them when I chew and I am grinding them as well. Since finishing chemo I have had 3 crowns, 2 root canals, and a replacement filling. One of my root canals aches all the time. My dentist explained how hard chemo is on your teeth- I had no idea, but he doesn't think I need to worry about ONJ. My Zometa is only every 6 months.
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@maggiehopley we're so sorry to hear what has happened to your teeth. Did your dentist make you a mouth guard for at night? Definitely make sure your dentist(s) all know that you are on Zometa, if you haven't already.
All about Zometa:0 -
Thanks mods. My dentist is very knowledgeable about Zometa and really took a long time to explain it to me. I did have a mouth guard made, but it triggers my gag reflex so I can't wear it. I have been working on training myself to relax my jaw and it has helped a lot. I wish my MO had told me that my teeth could be impacted by chemo, though.
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@threetree I hear you! Although I feel better after reading AJ & Maggie's comments, they made more sense than anything my oncologist or team has told me, I still want very much to know if it really is working! @moderators is there any percentage that we can be given of the effectiveness of Zometa on actually increasing bone strength, or inhibiting tumor growth? I have read the same thing as threetree that it can actually have negative effects on bone strength and actually cause fractures. With that and the bone disease osteonecrosis and the not-so-nice side effects of flu-like feelings, bone and joint aches, etc., I feel like we should be given some sort of solid information to make the decision to continue. Is it true that with each Zometa infusion your likelyhood of jaw osteonecrosis percentage increases? I have at this time made the decision to continue but I am always wondering if I am making a good decision for myself. I did go to a dentist just for the purpose of making sure everything in my mouth was "in order" and had a few cavities filled. I had not had cavities for over 45 years and then had 2 filled that have bothered me ever since. I don't know if I went to a not-so-great dentist or if is from something else. I am on Verzenio and Letrozole, not chemo so guessing that has nothing to do with it. I'd love to get answers to all of this from my oncologist, but as nice as she and her team are, I have to drag information out of them.
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Marcials1 - I just wanted to refer back to your comment about your recent fillings hurting after Zometa. I only have old fillings (very old) and I've noticed that they can start hurting since Zometa. I also have a lower front tooth where the gum has receded (years ago). The dentist said that was all that was wrong with it, so has left it as is. I notice that that too now starts to hurt more after Zometa. I can get achy jaws after my infusions. The only other thing about that is that I also have arthritis in my jaw joints now (thanks anti-estrogen drugs!) and when they start hurting after fulvestrant shots, Zometa, rain, and other bad weather, etc., I can get pains in my teeth and jaws; old fillings and otherwise. It makes me really nervous because I don't know what's caused by the Zometa or the other drugs, e.g. fulvestrant. There better be some real notable benefit to Zometa or it's just not worth it!
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Threetree - Every time I get a little more comfortable with Zometa and all this poison we have to put in our bodies I re-think it. I am thankful for the fact that there are these meds we can take to fight this cancer and give us longer lives and with that hopefully a quality of life. But I do question some of it too. We have the right to. And we'd be naive not to. My opinion. I have a dentist appointment Monday and then Zometa on Friday. If I do not feel comfortable after my dentist appointment I may delay the Zometa. I don't like my dentist much either. I feel like they are always trying to upsell me at every appointment and also they don't seem to be knowledgeable about osteonecrosis. They sort of don't even acknowledge it when I talk about it; they just stare at me with a vacant look on their face. Infuriating! So I don't really know what to do. I was thinking they just did a half-ass job on my fillings but the Zometa made it feel worse. I do not know who to trust. And I still want proof that it is doing something!
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Well, got my 4th infusion yesterday. I have still not wound up with a "side effect free" experience, as many apparently do, after the first one. So far, no fever, chills, or body aches, which is new and good, but I am really lightheaded and dizzy, along with feeling extremely lethargic. Also wound up with insomnia last night - something I don't usually experience. I'm just so glad they had a saline drip available for me, even with the shortage. So far getting the IV drip and drawing the Zometa drip timeline out to 45 minutes has helped quite a bit, but I'm still having notable problems with this darned and questionable drug.
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This is an interesting discussion. I had a filling pop out recently and didn't make the connection to Zometa. My next infusion is on Halloween. Boo (in more ways than one)
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Tougholdcrow - I'm getting my next fulvestrant shots on Halloween - my late mother's birthday, no less. It is strange to be getting these "scary" procedures done on that day😉.
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So I had my dental appointment Monday and told the hygienist that 2 of my fillings hurt. She looked at my most recent X-rays and showed me where the sinus was pushing down on the top filling. She said she was not in the position to give me the all clear to get my Zometa infusion but I could get more X-raysvand would have to make another appointment. I decided to go ahead and get the infusion which I did Friday. I had no major side effects. I did my protocol of making sure I had food in my system, plenty of water and took a Tylenol about 1 hour prior to drip. I had the 30 minute drip with one hour of fluids (yes thankful I could get the saline with the shortage - why is there a shortage anyway?) . It seems to work for me so far. This was just my second infusion. @threetree I still don't know how I feel about taking this, and glad your experience this pas week was tolerable! I decided not to miss it because I am going to skip a few days of Verzenio while I have family in town. My oncologist upped my dose to 100 and I had asked for one extra week of 50 while family was here and she said that would be fine but she did not follow up on it. I messaged the onc team through the patient portal and someone got back tome saying they would answer as soon as they could. That was almost a week ago so I will handle it on my own. I'll take (1) 50mg a day instead of (2) until my family leaves then I will start in on the 100 mg. It makes me a little uncomfortable to take it upon myself to decide how to handle this but since they don't seem to think they need to get back to me it is what I think is best. Which is why I am looking for a new oncologist. No Halloween visits for me - so far!
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The IV fluid shortage is happening because the main US manufacturing site is just outside of Asheville, NC and was damaged during Hurricane Helene.
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@maggiehopley Thanks for that information.
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Marcials1 - Glad your infusion seemed to be relatively uneventful so far. Maybe you will get lucky and become one of those who never has side effects after the first one! I had mine on Wednesday and both the rest of that day, and then on Thursday morning, I wasn't too bad except for some lightheadedness; "wooziness", and extreme tiredness. Well, that afternoon some body aches did kick in, and then that night I did get a spell of chills, all along with the continued spaciness and fatigue. The aches weren't as bad as before, and the chills were relatively mild and didn't last too long. I also slept really well, after having that insomnia the night before. The chills didn't stay long, but the body aches and that all around "wooziness"/"spaciness" and tiredness remain today, and I really haven't felt like doing anything. Hoping for better tomorrow. Just a horrible drug!
Re the dental stuff, my infusion nurse asked about any jaw pain of course, and I told her that I did have some trouble with one side of my jaw, but that I figured it was arthritis and/or an old TMJ flare up due to fulvestrant side effects, the weather (we've had some rain), etc., but that I wasn't too concerned about it being from the Zometa. Well, of course she had to go check with the dr, so he popped in for a couple of minutes to do a "jaw evaluation" and came to the same conclusion I had; that it was more likely arthritis from the anti-estrogen drugs than anything else. I mentioned getting sore occasionally where my old fillings are, and he didn't seem concerned. He said that osteonecrosis pain is one that steadily increases, is unrelenting, i.e. doesn't wax and wane, and gets ever increasingly painful. That is not what I experience with my dental issues, and I'm hoping that what he said might be of help/interest to you too.
I can't believe your dr's office hasn't gotten back to you. I would have emailed them back several times by now (but that's me). I know what you mean though about having to make your own decisions sometimes about these things, because they are either not available or not much help with the question/issue at hand. I also understand backing off the Verzenio for your visit too. There are a few times here and there (I try to make them very rare), where I just decide to not take a dose or two of my Verzenio, because I just want to be more myself for awhile. I hope you have a really nice visit with your family!
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Hi @threetree ! Maybe I will be one of the lucky ones with Zometa! I am shocked really. I always always get side effects to meds of any kind. So I'll take this as a sign that I'm supposed to continue with it for now. Like I said I am glad I did it this time since my Verzenio schedule is such a disaster right now. Thanks onc team. They never did reply to my question on how to handle the transition to 100 while my family was in town. Not a peep. They are going to get an earful from me. I hate to have to feel like that - like I have fight to get heard and only when it gets ugly do they listen. Are you feeling better yet after your infusion? I had a bit of the wooziness and tiredness too a day or two after my infusion. Agree it is a horrible drug. They all are in my opinion. And here I am watching every food ingredient I put in my body but meanwhile all these chemicals.
Funny my infusion nurses have never asked about any Jaw pain or any concerns at all before my infusions. They did ask me why I felt I needed the fluids though. I felt like saying "none of your business" but I told them that it made it easier for me to process the drug. DUH! Thanks for the information on the osteonecrosis pain being a more increasingly steady pain. That makes sense and makes me feel better about my old and new fillings.
So a few more days on 50mg Verzenio (only 1 a day vs 2 was my solution I probably already mentioned that!) then a few days off and then 100mg. And they have in my patient portal that I started 100 on 10/1. They are not to with it. Yup, need to find that new oncologist! Hope you have a nice week and get to feel like yourself!
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Marcials1 - I'm really drug sensitive and just about always get side effects from anything - even Tylenol. My fingers are crossed, that this is indeed a sign that you are done with Zometa side effects, and will have a much easier time from here on out. I continued to feel really wiped out and extra achy (no fever or chills), but started to notice an improvement yesterday. Interesting, I had started to take and eat a lot of calcium the day before. Some of the symptoms I was having correlated with low calcium, so thought I'd give it a try. Maybe that's been part of the problem? I was starting to get pins and needles, muscle cramps, stiffness, drowsiness, and really dry cracking skin, etc. I'm a little better today too, after about 3 days of calcium supplementation. I looked back and saw that my calcium was low early in the month when they did my blood draw, but they didn't check again before the infusion, and I thought it was pretty standard. The nurse said all they need prior to the infusion is the creatinine level. I think my calcium was still low and had maybe gone even lower throughout the month. Zometa just sucks the calcium right out of your body from what I understand. They give Zometa to people who have too much calcium as a treatment for it, so that says a lot. The onc had told me to keep supplementing with calcium while on Zometa, but it's been hard to find a brand/type that doesn't make me sick, but think I did finally find something that isn't too bad. Like you said, I too watch what all the ingredients are in my food then wonder why on earth I'm taking all these toxic drugs.
My nurse usually asks every time if I have any jaw pain and if I have recently had/plan on any dental procedures. Surprised that yours didn't. My nurse also asked about the fluids, but not why I felt I needed them. She asked more of a, "Does it REALLY help?" sort of thing, like she wasn't sure she believed it, and I told her absolutely; that it doesn't make it side effect free, but it does make it a lot better. I think they all think I'm a big baby (I am) with the fluids and 45 minute infusion time, but the onc is very accommodating and it helps for sure. I am still wondering if I can go through with another one. Every time I get it, I say "never again", but then I do it and wind back up in the same situation. I have a dexa scan due in January and I'll be real curious to see if this has been any help at all. Yes, looks like pain that comes and goes in the jaw and old fillings, is very likely not osteonecrosis.
Wishing you lots of luck with the new Verzenio regimen. I went from 150 in May/June of 2023 to 100 in Nov/Dec 2023 and have been steady on the 100 ever since - almost a year now. I still get really tired and more, but it's manageable, unlike with the 150. With such little info out there, I don't know if I'd be willing to do just 50, although I know many have.
Re the slowness of these clinics to respond sometimes, I was diagnosed as stage 4 in January of 2023, and had a devil of a time getting timely tests and treatment started in a timely manner. Most everything I had read on here had people in that situation getting the necessary biopsies and scans prior to starting the drugs, within about a month. I was getting like a biopsy one month, a scan the next, etc. and it was pushing on toward 3 months since my diagnosis, so I finally messaged them and said, "Hey, this doesn't seem normal at all (and a little more.)" They jumped, and I started getting several phone calls a day for a couple of days about "Can you come in at X time tomorrow? Can we schedule you for X right away?" etc. I know you can safely have some lag between diagnosis and treatment, but mines was getting way, way out there compared to what seemed to be the norm. If I hadn't questioned all of that, who knows how long they were going to take. Their excuse was staff shortages, radiology back-logs, and more; mostly due to Covid issues from before. We really do need to be our own advocates!
Again - good, good luck with the Verzenio at 100 mg.! I think it winds up being the most common dose for most, once all the wrinkles get ironed out.1 -
Thanks threetree ! I hope that my Zometa side effects are done too! I hope yours eases up with the next round too! Fingers crossed and positive vibes to you! They didn't check your calcium prior to your infusion this time? Seems like since they check the creatine and that calcium is such an issue for many that they would look at that also. I am lucky that my calcium so far is normal before and after. I have plenty of other issues but that is not one. I'm glad you found a supplement that seems to be working for you with out any side effects. We're in the same boat on the supplement and med side effects!
What is it with these people asking why we want fluids, "does it help", etc. I don't care if they think I'm a pain in the ass I'm going to keep requesting the extended drip and the fluids. You are not a baby. We are not babies, we are dealing with cancer and we have the right to feel the best we can. I know you keep saying you'll never do it again. I'm curious what your scan in January will show.
You went through an ordeal to get your treatments going by the sounds of it. And now I'm going through a hassle just trying to keep on top of the onc team. They are over worked and short staffed I'm sure. Too many people where I live and too many people with cancer. But that doesn't make it ok to leave us hanging. And you are right we have to be our own advocates. It seriously is like a part time job for me to keep on top of all of it. I keep notes and document everything. And they stare at me when I remind them of things they said, and dates that they said things, etc. I think they hate me!
Thanks for the wishes on the 100mg Verzenio. I'll need all the help I can get! It will take awhile to get my body used to it, but I know it is what I need to do. Good-bye easy 50mg, hello kick-my-butt 100mg.
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