My first 3 monthly infusion of Zometa passed without incident and, rather foolishly perhaps, I expected the same response from the 2nd infusion. How wrong I was.
For the first couple of days, I just felt a little more tired than usual, and then it all changed. I began to get quite bad pains in the abdomen, the lower spine, both shoulders and the right knee. The muscles both side of my neck seem to have seized up and it really hurts to turn my head from side to side. Oh, and I have a semi permanent headache. I am currently using Ibuprofen and managing to deal with the worst of the pain, although I am having trouble sleeping because I cannot get comfortable.
Ok, enough with the whingeing. I was just wondering if anybody else has had the same sort of side effects and how long they last. Also, is this the way it is going to be for every infusion? I can deal with all this if there is some tangible benefit to be had at the end of it. So, my final question is this. Is it worth it?
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I was told that I would get zoledronic acid (zometa) infusion only ones per year. Or alternatively prolia injections every six months. Maybe you should ask your oncologist about prolia injections if you have side effects? It is just my idea.
Welp I guess I’ll chime in with 2cents worth. I’m currently in the last couple ( few ) days of my 45th consecutive monthly Zometa infusion. Seems like a lot of guys have far milder se’s but I like to describe it as The Zometa Pain Train. I believe you can search my posts or search “ Zometa “ and look for some of my posts for the diatribe. I’d be on what’s considered the “ extreme “ ugly side of Zometa SEs. My first few infusions were nightmares …. Wake up in the middle of the night with bone rattling shakes and violent chills … or hurting “ everywhere “ in my muscles, or a ( er grade ) full blown panic , thinking I’m not getting enough air and that I’m suffocating. Therze lots more but this is the gist of it. Some of the “ reliefs “ I’ve developed are : buy one of those inexpensive finger oximeters from Amazon ( under $25 ) and use it to show yourself your pco2 is normal and you are indeed NOT suffocating. Xanax is your dearest friend when in a full blown panic attack …. And I bought a few of those “ Canned sports oxygen “ from Amazon to huff when I’m turning blue because my rib cage pain is so extreme that I can’t inhale properly.
Prep helps … before you go for the infusion …. Load up on an otc Antihistamine …. I use chlorpheniramine, take a big jug of one of those sports drinks with you ( I like sugar free grape flavors ) and start drinking it immediately as you leave from your infusion. The intention is to get those kidneys flowing and pee out that Zometa as quickly as possible. I also get out ahead of the “ pain “ by loading up on one of my opiate pain meds a couple hours before I go and keep on them until the onslaught is over. My Zometa lasts , generally, 5-8 days . Zometa has a very sneaky ( very strong ) mental component that eases gently up on you but you start having “ bad “ mental “ stuff “ happening, and then suddenly it will clear up very quickly right before the pain train stops. Its VERY noticeable when clearing up feels like a fresh new wave washing over you when it departs. It also signals the nearing end of this months train ride.
With “ all this “ you might ask if it’s worth it …. and my answer is a resounding YES. I’m eager to get my infusion every month, despite everything. I know that I’m literally paved with Mets …skull to toes ( every single joint in my body ) and I experience a bushel of skeletal joint problems daily ( can’t close my right hand properly and a couple fingers lock up every time I close it , for example ). My left knee is 3X normal because of cancer growth and painful, rib cage joints, feet .. etc. are especially troublesome and I know Zometa is holding back the destruction by trying to replenish my bone material. It’s my bone savior of sorts , imagine what would be without it. Yikes.
Just IMHO, but by all means get those infusions if you need them . The docs don’t offer them unless you do need them. Use some of my suggestions to smooth things out and you’ll be just fine … no biggie at all ( repeat this 7 times fast when the worms out of the can yayahahahaya) if you make preparations.
As always consult your medical team for the last word and best care …. After all you are trusting them with your life.
Hi Kaliber,Reading your reply makes me feel like a bit of a wimp. You are certainly going through it and I really appreciate your helpful tips and support. I will be making use of your suggestions next time I go for my infusion. I am what you might call a pessimistic stoic. I always expect the worst to happen and, when it invariably does, I just get on with it. What helps a lot though, are the little tips and suggestions that makes life just that little bit better.
Hey buddy , ….. we , hopefully, rise to the level needed for the occasion. I’m pretty sure you’d be able to rise to any occasion if challenged. Sounds like you will be fine for this challenge . IMHO , stick with your Zometa infusions because they are very beneficial for your poor bones. Very important. You get used to them and adapt over time …nolo problemo. At first it’s all new and scary but you’ll master it.
Hi SeasidThanks for your response. I am due a clinic meeting next month and I will discuss Prolia with my Onco. I always like to be aware of alternatives, so I'll see what he says.
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