Bone Mets suspected but could be side effect of Zometa...

justamy

I took a Zometa infusion last Friday. It came with the requisite giant list of possible side effects, but I was told I probably wouldn't get any. Friday night my blood pressure went down to 80/60. Saturday, I woke up with terrible squeezing pain in my chest. Went to hospital and they did tests but had no idea what was wrong. Sunday I started to feel stuff. By Monday I couldn't walk without severe pain. Today I have a fever.

So I call my doctor to tell her about the fever and she says that she suspects bone Mets and I have to get a scan Tuesday.

All of my symptoms can be caused by the Zometa, so I am confused as to why she is going there.

Has anyone had a bad reaction like this to Zometa? Did anyone that has bone Mets have symptoms like this that came all at once without previous symptoms. I don't know what to think. Any insight would be helpful. Thanks

sbelizabeth

Justamy, I had one Zometa infusion and then my onc switched to Prolia, so I had just one experience with the drug.

Side effects were pretty nasty for me. A couple of days after the infusion my bones hurt so badly I could barely walk--and I'm a tough old bird. Miserable fever too.

If you haven't had ongoing pain in your bones for a while, I'd bet my next paycheck it's the Zometa, not bone mets. Mets don't cause fever. Maybe your doctor heard "bone pain" and stopped listening after that?

My "Zometa flu" lasted 3-4 days and then all was well. I have zero side effects with Prolia. Blessings and gentle hugs--SB

justamy

Thanks SB. I'm starting to feel better and this is the 5th day. My MO doesn't make sense a lot if the time. Her nurse had never heard of anyone having a reaction to the infusion and was asking me what the insert said. Doesn't make me have a lot of confidence in her. Hopefully that's all it is. I'll have a scan either way which is Ok since my insurances pay everything. She really needs to work on throwing around the word "Mets." Thanks again!

Amy

Icietla

So glad you are feeling better -- I take that as a very encouraging sign. I hope the findings will be of nothing serious. (((Hugs)))

Cornflake_Girl

Just chiming in with my own zoledronic acid reaction. I had my first infusion this past Friday along with Herceptin and Perjeta and was told I might feel "flu-y" for 24-48 hours. Nothing I couldn't handle, right? Well, around midnight my temperature shot up and I started having bone/joint pain and stiffness that went from mild to excruciating in a few minutes. I couldn't even walk; I literally crawled/slid downstairs to get some water and stayed there for the night. The next day the pain was slightly better, but I didn't leave the house or even move my body unless I absolutely had to. It felt like someone was scraping my bones, it was terrible. By Monday, I was back to normal besides lingering pain in my ankles and fatigue. It was honestly one of the worst experiences I've had during my treatment, and that includes AC-T, mastectomy, radiation, and lyme disease.

Mets makes NO sense. Your bone pain is sudden, widespread, and just after an infusion of a med that's known to cause bone pain. Honestly though, I'd still do the bone scan if it's going to be paid for...why not? Glad you're feeling better, it's just never easy, is it?

justamy

Thanks cornflake. I will definitely get the scan. Unfortunately Ive been feeling worse instead of better. It's been a week. I still have the pain and a fever even though taking hydrocodone with Tylenol. I also developed a lung infection and am now on antibiotics as well. I'm really irritated with my MO because she doesn't seem to be interested in easing any of my symptoms. Fortunately my PCP is amazing.

I'm sorry you had such a hard time, cornflake. I can relate as I went to take a bath to soothe my muscles and could not get up to get out of the tub. I had to sort of roll out. Oh the wonders of this terrible disease.

KBeee

just Amy, I have not had Zometa, so I cannot comment on that, but if your MO (and the nurse) have communication skills that are that bad, you might consider changing MOs. I changed to a MO that is compassionate, knowledgeable, and takes me seriously, and it is the best decision I have made.

Hoping you feel better soon, and that your bone scan is clear

justamy

I do need to change. It's complicated here though because the only way you can change is to choose someone else in the same group. There are 6 doctors in the group and they are the only ones in town. I've never liked my MO. She doesn't seem to care about her patients at all. She sees me for maybe 5 minutes during my appointments and doesn't even do an exam most of the time. Right now, I'm so tired that changing seems like a monumental task. Maybe hubby can help.

bravepoint

My first Zometa infusion left me really achy for about a day and a half afterwards. I could barely get out of bed. I took some Tylenol and it eased up. The second one was a few weeks ago and I felt fine, no aches and pains!

justamy

Im trying to decide if it's worth it to try again. One big mistake I made was that I didn't drink any water before the infusion. I wasn't told to do so and I didn't even know it was an infusion. I just thought it was a shot. I was so dehydrated that they had to stick me 5 times to get it to work. I now know to drink a lot prior to and after. I really get irritated that you have to find out these things yourself when they should tell you. Also, I wasn't ready for the side effects. They said I probably wouldn't get any. My pain was do severe from the chest spasms and the joint/bone pain that they gave me Vicodin. I hate it but it was better than the pain. I still have the fever but my lung infection seems to be getting better. Anyway, I probably will do it again and just try to do a better job preparing myself. I've heard a lot of people that say, like you, that they had no side effects the second time.

bravepoint

justamy - I wasn't told it was an infusion either until the hospital called and booked my appointment. My Mo had told me it was an injection....I didn't really prepare for it but did get IV fluids before and after as a flush. Hope you feel better soon and the 2nd time is btter!

AnimalCrackers

Justamy - I've been getting Zometa infusions for almost 3.5 years.  My first infusion was bad - terrible chills, achiness and nausea.  I was knocked for a loop for the next couple of days.  When I mentioned the bad reaction I had to my nurse the next month (I got the infusion every month for 6 months and then reduced to once every 3 months) she said it would help to extend the drip time from 15 minutes to 30 minutes.  That did  the trick.  I only had similar reaction once more and that was a time I had the drip for 20 minutes because I had to catch a train to get home during a snow storm.  

With that said, your experience was far more intense and unusual from what I had or have heard from fellow bone metsters.  Some people take claritan prior to the infusion.  Definitely hydrate before and after.  They didn't tell me to do that either.  If you run a search for zometa side effects on these boards you'll get a lot good advice on how to prepare.  However I still have a feeling that you may not tolerate zometa for some reason.  What did your doctor and nurse say about your reaction?  

I hope you are feeling better.  

justamy

Animal crackers, I have researched a lot after the reaction I had and I don't think that it probably wasn't that abnormal except for the intensity and the EXTREMELY painful chest spasms. I have seen every other reaction that I had mentioned. The crazy thing is that I had it over 30 minutes which is supposed to be better.

As for my doctor, she hasn't said much of anything through her nurse. She gave Vicodin for the pain and that's about it. I have also had this area that hurts and it's either in muscle or in the bone. I've been complaining for 6 months(I see her every 3) so she also finally agreed to give me a bone scan and has decided that she thinks I have Mets even though she was SURE it was my implants before. Mind you she hasn't touched me in that entire 6 months. Anyway, here I go with the scan. If I have Mets, Zometa will be indicated for sure. As you can tell, my MO is not my favorite person, but in rural Missouri, you don't have much of a choice.I just hate the waiting game. Let me know what's going on so I can adjust. Sorry to vent to you. I am starting to feel a bit better. No fever today, so that's good. Take care, Amy

Mumzy3

i just started on Zometa to hopefully prevent bone metastasis. I have such a sore hip and pain across the middle of my shoulders/back. It has been achy for a long time before my diagnosis and I have mentioned to my Oncologist I am concerned about this pain. He says nothing would change even if I had mets, treatment would have been the same. But I want to know one way or another! Thoughts?

justamy

I would insist on a bone scan especially if you haven't had one in awhile. I had one last September, but because there was pain, she did another one (it had been 6 months). My thought on this as I wait on my results is that I would rather know. I don't care that the treatment will be the same. I would rather be able to prepare myself and my family for what lies ahead if it is Mets. I'm hoping that it isn't, of course.

I hope the same for you. I really don't understand why they care to do scans if your insurance covers it. Especially if it appears medically necessary as in both of our cases. I also have a lot of achy bones due to tamixofin. Maybe that's part of what's going on with you. Regardless, I would push for the scan.

KBeee

How can they say the treatment would b ethe same??? You'd be monitored with regular scans to see if hte treatment was working and change the treatment if it wasn't.

justamy

Kbee you are right. My doctor means that they would treat the cancer with Zometa (which I hate) and I am getting that now, so in that sense it would be the same. However, the monitoring would be much different and if Zometa isn't working, something else would be given. I really do not trust my MO and it feels like she is just going to write me off if I'm stage 4. I hope I am wrong. I'm seriously thinking about changing doctors, but they are all in the same office, so I'm not sure how that would work.

justamy

I just read my pathology report on the online site. No bone mets!!!! So happy! My bones are degenerating however because of chemo which is why I am taking Zometa. So I guess I'll just have to brave the side effects. I've heard it's easier the second time. Happy, happy,happy!

justamy

I just read my pathology report on the online site. No bone mets!!!! So happy! My bones are degenerating however because of chemo which is why I am taking Zometa. So I guess I'll just have to brave the side effects. I've heard it's easier the second time. Happy, happy,happy!

bravepoint

justamy - That is the best news! So happy for you!

Anonymous

My zometa is run over an hour b/c otherwise I get bad side effects. I also start ibuprofen 2 hours before & tylenol at the time the drip is started. I then rotate those every 4 hours for 3 days. For me, doing this is the only way I can be relatively normal after it.

Good news on your scans!

KBeee

Great news!!!!!!

FYI...I did change doctors within the same office, and the doc I have now is amazing. This doctor will be following you for years, so make it someone who is a good fit for you.