I've had quite a few infusions of Zometa over about 2 years, but I had an extreme reaction to this one. It has really slammed me. I have had a consistent fever since the day after infusion and feel completely drained. Been in bed most of today. It reminds of chemo although less intense.
I went in and had a Covid test just in case since I had a fever. The guy stuck the swab in an incredible distance. He told me "We have to touch the brain." I thanked him for not telling me that beforehand. (Turns out that's not actually true)
Still feel totally crappy, wiped out, but slightly better than this morning. Over-the-counter meds have helped somewhat.
I guess I'm not the only one here who has been through this. Hope this gets better soon.
Thanks. I'm feeling so much better today. I have that feeling you have after your fever breaks and you are recovering from the flu. Like almost normal again. Way better than yesterday.
Sorry to hear about you being hammered this infusion. Seems you have been pretty lucky overall. I get mangled every single time I get it .... monthly .... about two years worth ...for me too.
For me its a violent painful experience... hurts like hell. I do the decongestants and sports drink thing , but honestly, I don’t think that helps me much. I talked to my oncologist and he told me to “ preload “ my pain meds right before I get the infusion and get out ahead of it, this instead of waiting until the pain machine kicks into high gear and then taking them.
Sounded a little “ iffy “ to me , but I tried it and he was right. The last half dozen times have been milder with the preload. Still sick as a dog and the truck load of mental disturbances, but .... a little better yayahahahaya. I don’t get the freezing cold shakes much anymore , nor do I get as much of the rib cage pain that I can’t breathe right ( and need sports oxygen ) ...but still the bone pain is awful. I should say tho ... I absolutely need those Zometa treatments badly ... hard as they are , I wouldn’t want to stop. I have enormous joint and bone damage and the Zometa is critical for me. Got another one next weekend ... whahooooooo ... can’t wait for the fun to start yayahahahaya
Hopefully this time is just an aberration .... you’ll probably be fine next time. ( power of positive thinking ). I don’t mind the mess so much anymore, it’s just that nearly a week of every month is lost / screwed up.
An experience I have is .... after the infusion ...after several days , a kinda nasty mental thing creeps up on me almost unnoticed. At its peak , I’m thinking all kinds of ugly stuff ... this is awful ... I don’t think I can take much more of this ... headaches , I’m real sick ..etc. ... then 4 -6 days in .... sometimes when I just wake up ... or just spontaneously during the day , I suddenly experience what I call the “ let off “ event. All of a sudden, the soft sunshine shines in the window, birds start singing and I suddenly feel MUCH better mentally and physically . My spirits soar and I “ know “ the infusion hammer has broken. I can still get some bits and pieces hanging around a little ... but that “ let off “ is a sign of the end of this one. In fact that let off feels so good, I almost look forward to it monthly as a brief but substantial fluffing up of everything in general . Kinda like I imagine what a line of cocaine ( that doesn’t wear off ) might be somewhat like ..... if I knew about such things . Which I don’t, of course yayahahahaya.
I know exactly what your saying about that moment in time where things go from awful/barely tolerable to much better. The actual physical change is a little more gradual, but the psychological change is instantaneous.
I remember driving home after my hour-long MRI (refered to by the operator as "sound torture"). It was the last in a long series of stressful and/or painful medical procedures, needle sticks, appointments, etc. that happened during my initial diagnosis. Not to mention all of the pain from the cancer. I was so exhausted, I was in tears.
The next day I woke up and suddenly realized that I was getting better. It was amazing in that moment, it just erased all of the difficult things I'd just been through. Really amazing.
Ewwwwwwww that’s an ugly thought ... they’re watching for sure. Gonna get two blood tests this month. Already got one from the eom bloodwork and I’ve got the two days before Zometa bloodwork coming up next Wednesday too ... they’ll get an extra vial then as well. Wouldn’t even be a surprise if they wanted a cup of Urine dap ... yayahahahaya whatever ...
Yayahahahaya the thought police ..... well if they could do that , cocaine would be the least concern on that list. Yayahahahaya probably nuff said about that .... 55 years a Berkeley freak , a career in biomedical engineering and 20 years a licensed commercial grower leaves one with skills and knowledge few others have.
I was on 16mg of Dexamethasone daily for three weeks during my surgery and never felt better in my life. I wish I could stay on it for good but I guess one does need to sleep occasionally.
It really helps with side effects of chemotherapy and also helped a lot with this. They also have anti-tumor properties, but unfortunately there are too many problems with them for long-term use. I tried to do chemotherapy without the steroid for a few days and it was almost 2 times worse, really awful. Last time I tried that.
Have you thought about switching to denosumab? I had three days of fever after my first zoledronic acid infusion and also felt like a truck ran over me. Switched to denosumab for the next round and hardly noticed it.
I'm with the VA and they only do Zolendronic Acid (Zometa) so I'd have to go somewhere else. I might do that down the road.
That was my last Zometa anyway. I've done 2 years now and no benefit has been seen after 2 years. My doctor said we might consider doing more later if needed. I would think about going somewhere else at that point for sure.
I’m sorry about this . Our friend kaliber gets rocked by zometa too . I’ve yet to have the pleasure .. take care
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I feel bad for him. At least for me, all the other infusions were side effect free. This is the first time I had serious side effects. I really thought it might be something else, maybe even Covid. I expect my test to be negative.
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We all react differently to different treatments . That’s for sure . Good no covid. Hope you feel berry soon !💪😷
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I'm negative on the Covid. Just got the news.
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I knew it! Covid doesn’t want me or you . It likes its plate full of t. Fresh out here! 😳
Hope you will feel better soon!! (Also ”we have to touch the brain” sound like a horrible to hear from a nurse or doctor, uggghh) Best wishes that this will pass soon!
Thanks, I feel so much better today, I slept around 9 or 10 hours last night plus naps during the day yesterday.
The swab up the nose was quite an experience. The guy shoves the thing further than I can ever imagine sticking anything into my nose, then happily announces "We're half way there!" You'd think when they finally get the foot-long swab all the way in, they'd just pull it out quickly to relieve the suffering. But no! They have to rotate it for several turns! But then, what did I expect from a medical procedure anyway? Comfort and enjoyment? We don't have any needles to stick into you today, but we've found an ingenious way to torture you with a cotton swab.
I saw that they do have a simple saliva test coming out with no brain tickler.
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I'm not sure exactly what spot it touched on my brain, but I suddenly had all of these violent thoughts about the guy with the swab. Turns out the swab doesn't actually touch your brain. I did fall for this one though.
I had a shot of Aclasta inn 2012 which is also zelodronic acid and I had feverish shakes and felt cold during night after, but recovered just fine within a day.
Nobody has ever needed to poke swabs a foot inside my head, but I had 11 of The Worst Days I ever spent in hospital last November with a small intestine blockage due to adhesions to previous attempted RP surgery in 2010. I had a pipe pushed up me nose and down into stomach to drain the stomach fluids into a bag at bedside. Green fluid filled bag, then black fluid gathered, sometimes propelled by my vomiting, as all my dying gut flora was expelled before I had surgery to free up the adhesions. Luckily, no Pca was found anywhere, and this was fabulous news, and I was told my guts are in fabulous condition, music to my ears, despite my pain needing morphine, and my severe discomfort. I lost 8Kg over 11 days. I've since put 2Kg back on, mainly muscle, so my cycling speed is pretty good now I have built up the lost muscle during that trauma.
But during my stay in Day Surgery ward, there were far worse cases of ppl in trouble than myself. Young and old, boy, what a mess they'd gotten themselves into!
At hospital I am always humbled by those who suffer far more than I do.
But tonight, a friend's wife had cooked up a little too much food for her husband and 2 kids, and given me the leftovers to her husband who delivered this bundle. She is Japanese, and I very much enjoy Jap food.
Now it is obvious to me that of course I am a single man, and as such, I am forced to be married to myself, and to my bicycle and I can plainly see why some skeptical men marry women who are naturally fabulous cooks. So I ventured to a store and bought 2 bottles of Jacob's Creek 2017 vintage Cab Sav which indeed is such a wondrous drop. I delivered one bottle to my friend. But tonight I put on radio tuned to Classic FM and opened other bottle and went straight to where I imagine Heaven is like, or should be like, if indeed it did really exist, and music plus the food + wine was yet another unforgettable experience due to what has turned out to be a fabulous friendship which puts a man into a mood where his Pca trubbels seem light years away. Whoever chose the Bach, Handel and Mozart tonight at ABC very much excelled in their capacity to choose far better music than I ever could! Another very nice lady.......
Such is the generosity of Nature to bestow me with such good friends. Sure I have some trubbels I could complain about, but most surely Not Tonight, and I look forward to a fine Monday with little rain, and I can go for a decent bike ride.
For last 3 days it rained here well, and the drought and bushfires of last year seem distant, and C19 is not likely to get me here in Canberra, and farmers look set to have a truly fabulous growing season, because what they really like is growing good food, an extremely noble activity IMHO.
Psa has nearly halved after last shot of Lu177 on 24-July. 30 to 17, Wow!
Oh, geez. I'm laughing and practically crying reading this description, and Kaliber's account upthread as well. What all of you guys go through really sucks.
Thanks. Don't know yet on the Covid test although I expect it to be negative. My fever is gone today and I feel about as "normal" as I can with ADT. Yesterday I felt like I was on chemotherapy.
Sorry for you Gregg. Our body is subjected to all kind of abuse in the probing and trial and error process of medicine. Our mind is somehow left to its own devices to cope with the onslaught. I had moments like the one you described. Hang on to that feeling next time you go down in the dark valleys and have to manage one step at a time.
My first infusion left me in bed for three days... The fact I was committed to a cook-out at my house (just be there, do nothing) to entertain my wife who was in-patient rehab at the time didn't help. Didn't want her to know I was sick as a dog, so 10 minutes before she arrived I crawled out and got into a chair, where I sat for the entire thing. The kids covered for me, thankfully (and did all the work.) Not had that reaction since, and hope I don't again!
Wow.... thank goodness you finally described the Covid test where the guy stuck the swab in an incredible distance. He told me "We have to touch the brain."
It was up your nose.... I originally pictured the guy going up your A.hole......Whew
The difficult part was not knowing what it was since I had never any reaction to Zometa before. When you get chemotherapy you know what to expect so you're more prepared for it. It was such a weird feeling, like what is happening to my body? I believe what I had is called an Acute Phase Reaction, not that uncommon with Zometa. Here's a definition I found on-line:
Acute phase reaction (APR) is a systemic host defense response against infectious agents, and to a great variety of noxious insults that are harmful to the host. During APR innate immune mechanisms are activated, which induce APR, a highly coordinated and very effective defense reaction against the initiating insults.
my husband has side effects too. no fever but achy bones, lethargy for 2 days. he does take zyrtec day before, day of and day after. that seems to help a bit. take care
So sorry! I'm hoping they come up with an "easy breezy" treatment for us all soon. None of these things are fun....I'm fighting the building issues of over 4 years on Lupron and over two years on Xtandi. Let's hope for the easy button....SOON !
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