Got my scan results today. CT was good with shrinkage but bone scan showing something happening with my spine. Doctor talking zometa every 3 myths. What should I expect. Is it only IV? My veins are shot. Side effects? Has it made a difference in your bones? Etc
Zometa: Got my scan results today. CT... - SHARE Metastatic ...
Zometa
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mariootsi
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I found this and thought you might want to hear what others said ... I turned it down when onc wanted to put me on it because of the horrific jaw bone problems it caused in some. I'm not up for that and the front of my teeth look good but in the back are old root canals, crowns, etc. I decided against as I had no peace about it. drugs.com/answers/infusion-...
hope none of this offends you in any way, just what I've read and I said "no thank you, I am not willing to take that chance".
What did your onc give u instead?
I stayed on the calcium and D3 twice a day because my onc wanted to put me on the injections due to to osteopenia and bones that break easy. My onc wanted me to take Xgeva, but they are all basically the same, to my simple understanding anyway.
I would rather do the d3 and calcium!
I'm on all 3. Calcium+D3, C, & Xgyva. Only been a year though. 🤞, But I'm not on Zometa.
Hope you are doing well!
So far, so good 👍, except I overdid some medications trying to deal with pain & trouble sleeping & wound up with really mild, yet chronic daily dizzy spells just started over last weekend. Had a long talk with drs. & pharmacist about my meds. 🤞we got it straightened out.
Hi, Marianne,
I had my first infusion of zometa a month ago, so too early to determine effect on bones. I do believe this is administered via infusion only. My only side effect was bone pain for a few days. It was suggested that prior to next infusion (in two months) I take Claritin the day before and for 2-3 days thereafter. God bless you, Marianne!
💗💗🙏🏻🙏🏻 Linda
Bless you Linda. Thank. Continued success with zometa.
I've had Zometa for about a year now without many side effects. The first infusion, I felt flu-ish after for the first day. But it went away quickly. I had spine mets and they are doing well and not growing but supposedly healing. I've also had radiation and am on infusion chemo and antibodies as well for my liver met (that have also resolved). I get the zometa every 3 months and it takes about a half hour for the infusion.
So happy it's working for you
Hi Mariootsi: When I went to MD Anderson for a 2nd opinion, they said take Xgeva monthly instead of quarterly. I have been doing that monthly since 10/2021. I take great care of my teeth. No problem. However, I did learn that if the jaw bone does start to die (very rare), Hydrobaric Oxygen Therapy (HBOT) is approved by insurance/Medicare to remedy it.
Praying you make the best choice for you, and it works!
❤️🙏❤️
Thank you so much.
Did you mean hyperbaric oxygen? It is oxygen breathed under increased air pressure in a special chamber.
Yes, Hyperbaric Oxygen Therapy. ❤️🙏❤️
Jaw bone problems not as rare as you might think.
Now that's interesting. Something to research.
I had jaw problem with xgeva. But HBOT not recommended if cancer is active so I did a pic line for 6 weeks. The infection is gone in jaw but I still do have necrotic bone. I am no longer on Xgeva for about a year and a half. My scans have been good thus far.
Glad your scans were good but sorry you had jaw issues.
Hi!
I’ve been on zometa infusion (only) ever since diagnosed with mbc in my spine in 2019. Never had any side effects. Started with once a month and then once every three months. Important is to ask nurse to give the infusion over a period of half an hour VS the standard 15 minutes. That’s supposed to help mitigate any intolerance issues.I also ask to be hydrated with an in nrfore and after. I’ve also heard about taking Claritin but never needed it
Everyone is different. If I’d not have wanted to give myself the best stab at a longer life I’d never have taken Ibrance. It too has potential really bad side effects. It’s a decision we all have to make for ourselves. Just wanted you to know there are many of us who have not had any issues. You may not either. Perhaps discuss with your onc? Wishing you all the best whatever you decide. 🙏🏻❤️
How kind of you to reply and give me advice.
My pleasure. Just saw the typos so here’s what I wanted to say:
I also have a hydration infusion before and after the zometa. It’s easy for them to do as you’re already hooked up and I’d read we need to be well hydrated when on this med. it really helps strengthen bones. ❤️
So good to know. Thank you.
I'm just so concerned because I get side effects with everything. I'm no good on meds. I guess I just have a weird system.
I'm that way too, I'm very sensitive to meds. I guess the scariest thing to me about the bone med injections is that if it does cause jaw necrosis or other horrors, it's not reversible. My current onc is not 1/10th the doctor my previous one was; he was with MD Anderson and he is the one who suggested calcium with D3. He is no longer my doc but I'm still following HIS orders because the new onc doesn't seem to be very clever. God bless you and heal us all in Jesus name, amen! <3
Amen
Hi Red1246!!
Do you know what Claritin is used for, specifically? I see so many people take it. Is it to relieve bone pain? I’ve never been told to take it for….well…what we take it for! Haha!
Last I knew, it is used for hay fever and allergies!! 🙃
I have no idea why it’s suggested if one has issues with Zometa. I’ve not had to use it but assume one or more of the ingredients are helpful. Whatever works, right?’😊
This medication is an antihistamine that treats symptoms such as itching, runny nose, watery eyes, and sneezing from "hay fever" and other allergies. I know that it has proven to be good when taking Fulvestrant because it can be itchy at the injection site. I don't know why it is taken with Zometa
Claritin is an antihistamine that helps with bone pain. I take it daily. I've been told that many cancer centers give a dose of Benadryl prior to IV chemo.
I've had excellent results with the Claritin - MBC diagnosed in October 2017.
I'm on Generic Allegra because I get chronic sinusitis all my life. Due to the fact that Ibrance can lower your WBC (white blood cells count), sinus drainage can make you sick. Allergy meds help me fight my problem.
Hi, again!!
My oncologist first suggested Zometa, but I opted for Xgeva after doing some research. I, too, have very bad veins and only one arm to use due to lymph nodes removed from the other side. I have to go once a month for a quick 2 second injection and that’s it!!!
I am aware of the jaw bone problems, but if you take good care of your teeth, it’s usually not a problem. I made sure my dentist was aware of this med, as well.
The only side effect I’ve experienced is pain in my hips, but that may be caused by the Anastrozole. Who knows?
It’s all tolerable, in my opinion. I’m not a young woman, but I like to say I’m tougher than this damn disease!!!
Good luck with your decision!!
🙏🏻🙏🏻🙏🏻
Why did you choose xgeva ?
my xgeva is self administered as a subcutaneous injection into my tummy fat. Doesn’t hurt.
It’s an injection and not an IV infusion. Fast and easy, plus a little less of a chance of ONJ. 💗
Thank you so much
I only have one hand that can be used for the same reasons as you.
hi Marianne.
not only does Zometa (and Xgeva) strengthen your bones, it also alters the 'micro-environment' of the bone. I think of it as a cancer-repellant of sorts. it definitely has benefits. and it definitely has risks. I believe they (oncologists in general...but not all) are not as upfront about the risk of ONJ as they should be. I know someone on this board who developed ONJ and it has been hell for her....physically and emotionally. so this ONJ side effect is real. and yet many, many, women take it without issue.?.
back in 2017, I had a difficult time deciding, like you. ultimately, I said yes to Zometa and I'm not sorry I did. the 'cancer repellant' analogy really appealed to me. after 3 years (with no side effects), my jaw bones began to faintly light up on my bone scan. I then opted to go off the Zometa...with my oncologist's blessing. I felt like I had received the benefits but didn't want to push my luck.
it's a tough call. pros and cons for sure. none of this is easy🙄
best of luck with your decision!
carole💛
btw...I tolerated it just fine. was very achey for a few days after the first infusion but after that, no side effects at all. I also had my dentist do a thorough exam of my teeth and had an extraction done previous to starting the med. and yes, only given by IV.
Koko- thanks for taking the time to write a very thorough post for our Maritootsie.
I will just add that because of Maritootsie’s bad veins and fear of ONJ, seems the shot xgeva best. My hubby who is a RPh writes articles for JAMA JCO ect and has written articles about xgeva….he helped me understand the risk vs benefits of taking xgeva. Large groups of Pts with cancer in the bone were studied with xgeva and and placebo( both given calcium and Vit D) and there was 2.5 year earlier occurrence for having your first compression fracture in women not getting xgeva. That is a big QOL improvement and is the reason that many doctors offer it. Of course, you have to weigh that against rick of Ostronectosis of the jaw which this whole class of drugs can cause but is considered rare. Because of the very long half life of the drugs and their is data on file showing that quarterly dosing is as effective and exposes us to less drug over time, I opted to get 4 shots a year. Regarding ONJ( the jaw thing) this drug is not for everyone. People with need for dental care like root canals etc should avoid it. I hope that was helpful.
My onc didn't mention jaw issues at all. That scares me
I agree...scary indeed. that is what I meant when I said that most oncs do not even mention the possibility of ONJ.....which they certainly should whether 'rare' or not. how can one make an 'informed decision' if they are not informed in the first place. carole XO
Carole, you are so right! She kind of presented it without a choice.
mine too😠. the only reason we had a discussion about the ONJ was because I asked her directly, after reading about it during my own research.
Now that I have received all the comments on this site and also done my own research I feel equipped to have an informed discussion next time I see her. We always have to be our own advocate through this nightmare!
agreed Marianne....we certainly do have to be our own best advocate! good to hear that you are now feeling prepared to discuss with your oncologist. knowledge is power💪.
best wishes.
carole💛
You are so right. Sending the best to you. Thank you
I had every side effect they said was possible! I won’t be taking Zometa again. It was like a bad flu, the aches lasted 2 weeks, my hands are still hurting. I had discussed 31/2 years ago with my oncologist that I was not interested, but last month right before Christmas she ordered that infusion. I didn’t realize that was what it was. I had been taking
An easy shot called Xgeva/denosumab. No side effects at all! I should have been paying attention… I actually even went to the ER, my daughter took me, she was really worried.
I’ve been taking Zometa every 3 months since spring of 2015. The only real side effect is tiredness the next day. My bones look good on all the scans and the metastasis was in all my bones in the beginning. I’ve not worried about the jaw situation. I get dental checkups every 6 months. Good luck to you!
Hi Marianne,
My wife took Zometa for a few years from 2017 onward during her first years on Ibrance and Letrozole. Her Mets are quite widespread to her bones, so they highly recommended it. Unfortunately, she was one of the few who did have a lot of problems. They warned that the first infusion is usually the worst and it was. She ended up in the hospital for a few days. The advice about slowing down the infusion rate helped a lot to 30 or even 45-60 minutes. After that, she had few problems with the infusions themselves. After a couple years, she was one of the few (8-10% I’ve read?) who got ONJ. She has perfect teeth, no cavities, no significant dental work, etc. it just came on by itself. She spent over a year being treated by a team of dental oncologists at Dana Farber. It finally subsided, but was both painful and frustrating. (A funny side note, the most pain she ever had with it was at a Billy Joel concert at Fenway Park with our daughter and her husband. Great concert but not for her... ) As Carole said, there have been a few other women on this board who have dealt with ONJ even worse and longer than my wife but most have no problems. But the real kicker was right before COVID started back in Jan 2020. She ended up in the hospital for about ten days and they figured out it was caused by another reaction to the Zometa. Really whacked out her electrolytes, caused some issues with her liver and other systems, etc. One of the docs who treated her found a few other women over the years who had similar symptoms from Zometa and actually wrote a case study for one of the journals about it. Needless to say, her main onc stopped it at that point. More recently, she started the Xgeva shots with no problems. I think I remember that Zometa can stay in your system for many years, so if you do have problems beyond the first infusion (which does seem to cause flu-like symptoms for many people) you may want to look at other options quickly.
I know many people have had great luck with this medication, so like many things, it’s a matter of balancing risks. The other good news is that it doesn’t seem like the Mets in her bones have spread at all in nearly six years, though she has had other progression in other areas. (Starting 5th line of treatment next week…) So maybe the “anti cancer” properties that Carole mentioned worked for my wife, too? Whatever you choose, all the best and good luck!
Dave
You are so kind to reply. Glad she is doing well now. Sorry she went through all that!
hi there - I’ve read all the comments and agree that it’s one of those difficult decisions to make. I’m on self adminstered monthly xgeva and have been for 14 mths along with palbo and Letrozole and calcium/vit d for widespread but micro spinal mets. No side effects or reactions. My dentist prescribed high dose fluoride toothpaste which has so far prevented further cavities in my awful teeth. I had already had a recent bone infection in 2019 before cancer treatment started so was terrified about ONJ. My nurses always ask each month that my mouth is ok. I do get ‘’flares’ of sensitivity (two per month) in my gums but they generally disappear on their own. I also have a 20 yr old hip replacement and xgeva can affect long bones if and when I stop taking it. It’s a tough decision to make as I dont know how I would be if I didn’t take it. On balance I’ve done ok so far 14mths in with grade 3 aggressive but hr+ tumour with 19 positive nodes. Cancer will do me in at some point in the future but not yet!! And I want to keep walking and enjoying life.
You give yourself your shots? No iv?
no iv. Just a tiny syringe 1.8ml that I draw up myself and self inject in my tummy fat. I then phone through the batch number to the nurses. They give me a supply of needles, cotton wool, wipes, and a sharps box. Been doing this for 1 yr - took a while to get the knack of fully drawing up the liquid from a vacuum sealed bottle and it has to be kept refrigerated but they showed me how to do this.
Hi. I was on zometa every month for two years. About a year ago I developed the osteonecrosis. I have it in my jaw and i also developed a hole in the roof of my mouth. I had surgery to remove the dead bone as well as my whole upper palette being opened up to remove the dead bone in that area. I developed another hole in my upper palette a few months ago. I am seeing a specialist at Moffitt. There is no cure. She doesn’t want to do any more surgery at this time. She is going to treat the flare ups as they occur as long as possible. My mouth is always hurting and I have to be really careful chewing on the side where the ONJ is. There’s no way to avoid the hole in the roof of my mouth so everything I eat hurts unless it’s completely soft. I’m one of those people who gets the rare side effects. The Zometa helped my bones so I’m thankful for that. I’m not trying to scare you off of trying it, I just want you to be aware that it definitely happens to a few of us. I pray that whatever you decide to do it will work for you.
i am so sorry you are going through this. Good for us all to see this. Someone’s miracle drug is another’s nightmare.
Omg. That's so horrible!
so sorry normalee. That sounds awful. It’s like we all have an Achilles heel in our body regarding cancer treatment. If only we knew who’s most at risk. It would be nice to think that that genetic profiling might help address who’s most at risk in the not too distant future
Hi Mari
First I want to say congratulations on your good results from your CT scan. That’s amazing!
I have numerous bone mets. Thankfully they are stable and some are healing. I had 2 shots of Xgeva. One in September and another in October. I had really bad bone pain after the 2nd shot. My onc put me on a holiday break. I am restarting it at the end of this month with hopes for a better outcome. I know this drug is a great tool to have in my arsenal if I can manage it. Keeping my bones as strong as possible is important. I take calcium and D3 as well but had been anyway. The shot itself is easy and given monthly at my check up. I did need dental clearance before starting and will do 6 month dental check ups
I know you’re going to make the best decision for yourself. And again, congratulations on your scans! ❤️
I've been on Zometa for five years now and don't feel significant side effects. When I get done with the infusion, I can always use a good nap, but that is about it... Best of luck to you if you decide to try it.
And I have it done every three months rather than every month; the research shows that every three months is just as effective...
I began Zometa in January 2018. I was on monthly infusions for 2 years. I have since been altered to quarterly infusions. I have been stable ever since. I had extensive bone mets with a spot on my hip and in my brain.
The first few Zometas I had flulike symptoms. If you consistently drink water to flush the medication, you will feel better. The nurses recommend this as well.
Zometa is used to strengthen bones. I too was very nervous about the side effects, but I have done really well. I think it is something that you get used to. I also have kept my port since 2006, so they are able to access it for labwork and the infusions. My veins are shot, so this is the best alternative for me.
I wish you luck and success with your treatment plan. God bless!
I started Zometa in October and have only had one infusion. It took me 6 years and a recurrence to the bone for me to ageee to take the drug. My dentist assured me that ONJ is very rare and took a full set of images before I started on the Zometa. I’ve been told by the dentist that extractions can be performed on the drug. You just need to have good hygiene and follow up afterwards during the healing process. I believe there is a limit on the number of years you should take Zometa (3-5) before going off it. This is a well kept secret learned from another MBC support group friend. I’ve only just started, so cannot advise you there. Evidently, the risk of getting ONJ increases a lot after 3-5 years.
After I took my first and only infusion of the Zometa , my body felt a lot better. I was on Letrozole for six years and developed a severe case of osteoporosis as a result of not being on a bone strengthening drug. I’m happy to be on a drip that does double duty treating both my osteoporosis and and bone met.
Happy it works for you.
I started quarterly zelodronic acid infusions in Jan 2021 and have had no side effects from it. I also take vitD and calcium supplements daily.
I haven’t had a bone scan since, to determine its effectiveness as my oncologist is primarily interested in my liver mets at this point.
I also have developed challenges with finding a vein so that’s frustrating with everything- bloodwork, CT scans and zelo infusions 🥺
I have a dentist appointment next week for a cleaning so I’ll definitely be asking if their x-rays show any signs of ONJ
All the best to you in your decision.
Kim
been on Zometa for 3 years. Initially every 3 months, now 2x a year, no side effects , generally go right to the gym or a long walk after infusion.
I have taken Zometa IV since March 2013. I had the flu like symptoms in the beginning. Hydration was added to my treatments and I took Claritin too. I did have a root canal under supervision of oral surgeon with no issues. My onc says that I have had a lot of Zometa and I just discontinued last month. I don't miss that quarterly arm prick.
I have been on Zometa since last May. Had flu like symptoms for one day after the initial infusion. No issues after that. I just make sure I am very hydrated before and after. I also get fluids with the Zometa. I was told the same thing as kokopelli2017, the bone that is grown while on the medication is more cancer resistant.
I'm a long timer with MBC, "extensive" bone mets from time of first diagnosis. Xgeva wasn't around yet when I was diagnosed (March, 2004) so Zometa was my only choice for bone strengthening. My onc did mention ONJ as being one of the most serious side effects, but added that it is not common, and that having a history of good dental care reduces the risk even further. I've attended several BC and MBC conferences and have met alot of women with MBC--not many have developed ONJ. I became friends with a woman who lives about 90 minutes away from me who eventually developed ONJ and was being seen at a major university cancer center. She had a dentist affiliated with that cancer center. When she kept getting infections in her mouth, he recommended she use Arm and Hammer Peroxicare tooth paste and original formula Listerine mouth wash. When she used those, she quit having infections. So I, rather superstitiously, began using those. I turned out to be allergic to Zometa, but was able to continue on it with a half dose, 2 hour infusion time and retreatment with IV benedryl and hydrocortisone. I did get a port and actually rather enjoyed being in the infusion room with other patients who I often had good conversations with! Once Xgeva became available, I switched to it. I have had multiple bone mets in my spine, pelvis, a rib and left scapula. I have never had issues with those--no pain, no fractures, no disability. So I've been on those bone meds for nearly 19 years. I only developed mets other than bone mets about four years ago. Blocking the left ureter (tube between kidney and bladder). A year later, two tiny mets on the surface of the brain (treated with stereotactic radiation) and in lymph nodes near my arm pit, causing neuropathy. Now, mets in abdomen, including in the duodenum causing a bowel blockage. That has been the first and only really serious complication I've had with this blasted cancer! I suspect that if I'd not had Zometa and Xgeva, I'd have had serious bone issues well before now. I believe that the benefits of these meds outweigh the risks, but I understand that ONJ can be scary!
Hang in there maroootsi. 🙏 God bless & keep you & 🥂 here's to a better year.
Hello, i did reclast infusion. The best advice i can give is prob check with your dentist first if there are any major dental work that needs to be done before starting zometa. healing problems on major dental work could be a possible side effect. Also they said doing the infusion at a lower speed helps a lot. I got achey for about a day but didnt even bother taking any OTC pain meds. It did help with my osteopenia with just one infusion so it is something that you can opt to stop in case you don’t want/need anymore.
I want to just share my personal experience. I had a Dexascan early after my dx of Metastatic. I had a few mets ON bone but most were in lungs. The Dexascan showed I had a fair amount of bone loss although I already took Calcium with D. That onc never told me the SE of Zometa but I started anyway. I changed Onc, then was told about the risks vs benefit and chose to continue it, dentist totally knowledgeable about risks. About 2 yrs in, was changed to Xgeva monthly then quarterly until I hit the 5 yr mark, Onc said current studies show no value in continuing longer but risks of ONJ go up. There is a wean off procedure that was Zometa IV every 3 mon for a year. All bone mets had disappeared years ago. I ask last Fall for a bone density test and learned that my bones were in great shape, zero osteopenia and I am 64 yo! I have a mouth full of root canals and crowns and so far so good. Jan 15th I will be 9 yrs Metastatic and on just Faslodex, I'm just lucky! But I do have degenerative shoulder joints.
hi fancydog. I just wanted to jump in and say congrats on 9 years! very encouraging to hear as I am now on just Faslodex as well. you made my day😊. and btw, I had heard that these bone meds are only beneficial for a few years and then the risks of ONJ outweigh the benefits. your oncologist is smart and up to date on the current studies👍....very good to hear.
best wishes for continued success....
carole💛
Thanks Carol, there's not many of us on Faslodex only! Best wishes to you,
Kim
Hi Marioots,
I Just got back from my new oncologist yesterday (my original doc retired) and he suggested switching from monthly infusions of Zometa to quarterly… said the research showed about the same benefit. I’ve been on monthly Zometa for about 6 months. My mets were mainly in my spine.. VERY painful until surgery and radiation and I already had osteoporosis so I was willing to take the risk of Ostronectosis of the jaw, but I’m going to switch to quarterly as as new Onc suggests just to be safe. (also taking iBrance and will start on Riboclib as soon as I can afford it.)
I had a port put in at the start of the treatment since my veins are not in great shape and that has made the infusions easy and painless. Port is a bit weird to look at (I’m pretty skinny so it shows!) but I have not had any problems with bone or joint pain. I drink LOADS of water, keep up with my physical therapy exercises, vitamin “D”, and Calcium and see my dentist regularly. … and keep my fingers crossed!!
Best wishes to you.
Thank you. Continued success.
Mine said quarterly too
dear M! I’ve had Zometa since I started this journey in July 2020. It has saved my pelvic bone which was sore and spongy and in danger of fracturing. I was limping and finally had to be on crutches. Two months later after starting Zometa, I could start walking without crutches and finally ditched them in October.
So what to expect? For me it was pretty benign. It’s an infusion lasting about 15 minutes. You need to be well hydrated for several days before and after and must avoid dental work in the weeks after infusion. I feel completely normal during the infusion and can’t say that I feel much after…perhaps a little tired , susceptible to feeling chilly (it’s wintertime now). For the first two years I took it month,y. Now for the next two years I take it every 3 months. Zometa stimulates bone growth and counteract some the bone degradation caused by cancer.
That’s it..I hope this is helpful to you and you enjoy the benefits of this meditation. 🥰
So glad you were able to put the crutches away.
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