Xgeva to Zometa: Just some info... - Advanced Prostate...

Advanced Prostate Cancer

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Xgeva to Zometa

erjlg3 profile image
erjlg3

Just some info......Elgie had his Trelstar and Xgeva appointment yesterday. Out of the blue they switched him from Xgeva to Zometa due to.... they don't carry Xgeva any longer because it cost too much. By nighttime his bones hurt so bad that he couldn't even walk. Today he is still hurts but is taking extra pain meds. Seems to me that they should have given him a little heads up that he could possibly have some pain. Does this usually happen when 1st taking it? 🤔

26 Replies

Yep, welcome to the Zometa pain train. I’ve had about 30 Zometa infusions , so far, got another one Monday morning. My first few included intense bone pain, super hot sweats and waking in middle of night with bone rattling chills. Very stiff painful zombie muscles ... near paralysis it seemed like. After a few times the intense part will likely wear off a bit but each infusion can be a trip to pain city. Yayahahahaya. Before you go in to get the infusions , get and load up on some OTC flu meds ( chlorpheniramine) for the Zometa flu. Buy some of those grape flavored sports drinks that brag about replacing your electrolytes on the label ..... those make you pee a LOT. Start drinking those immediately after getting the infusion , leaving the building. Drink those flushes the Zometa out of your organs quicker .. reducing Zometa organ damage and reducing the intensity of the experience. My infusion side effects rarely last longer than 6-8 days ( sometimes 3-5 ) and change dramatically during that period of time.

If his chest pain ... thorax pain is strong enough he might be left gasping for breath from the bone pain .... I keep a couple bottles of those boutique sports oxygen canisters ( Amazon ) on hand to inhale which reduces my gasping for air and cools / calms me reducing the near panic attack experience. If he is literally shaking from chills so hard it’s nearly uncontrollable, jumping into a hot jacuzzi or bathtub or even hot shower can dispel the chills quickly and considerably.

Loading up on your pain meds “ before “ the infusion gets you out ahead of the pain and is WAY better than trying to play catch up with the pain afterwards.

Not everybody gets the intense side effects but if you do ( I do ) then these things will help ease the experience considerably.

Just .... if you are getting Zometa then you really need it for those serious bone issues caused by the adt. Zometa really kicks my hind end every time I get it ... it’s rough.... but I strongly want that infusion because the benefits FAR outweigh the side effects by a bunch.

Welcome to Zometa land warrior .... plenty of other soldiers right here by your side.

Just say’in 💪💪💪❤️❤️❤️

erjlg3 profile image
erjlg3 in reply to Kaliber

Wow Kaliber!!!! That's some rough stuff!!! He couldn't even use his hands correctly. He didn't know they switched until he got there or I could have ask you all how to prepare. You have a wealth of information on you. Thank you so very much. I'm so very sorry that you or any of you have to go through that. Blessings on you.🌻Jackie

Kaliber profile image
Kaliber in reply to erjlg3

Just a little prep and juice afterwards.... can make it much easier. He’ll probably get some fairly intense effects for the first 24-48 hours but with the prep the effects will moderate and it’ll get easier the more infusions he gets. It’s more scary than anything early on .. with experience you’ll see it’s not “ all that “ yayahahahaya. No biggie. As things I have to go thru with adt are rated, Zometa isn’t highest on my list . Yayahahahaya yayahahahaya. At least Zometa is here and gone, some of this stuff is 24/7 all the time. Just part of the staying alive game ... you get used to it .

❤️❤️❤️

erjlg3 profile image
erjlg3 in reply to Kaliber

🥰🙏🤗😻🌻❤ Such a big help Kaliber!

MateoBeach profile image
MateoBeach in reply to Kaliber

You are so tough Kaliber. Inspiring.

Kaliber profile image
Kaliber in reply to MateoBeach

Not really brother ... after you wake up over 700 days like this, you take it for granted and just get on with things. Its valuable added life, it’d be a shame to waste it. I’m the poster child for adt zombie and add in the pain train ... it’s a lot. No one would want to live one of my days. But .......

I’m planning trips to the coast if I’m able and other ways to offset my zombieism ( etrike ) .. going to the zoo, shopping in the malls etc. , h&b trail riding, aquarium.... I refuse to be stuck on my couch or bed all the time. My glass is definitely half full and I can still lift it to drink as well ( maybe a little help from the hammer now and then yayahahahaya) . Life is still good ... in a weird sort of way. Yayahahahaya yayahahahaya.

Thank you brother MB , hope life is good for you too.

💪💪💪😁😁😁❤️❤️❤️

SeosamhM profile image
SeosamhM in reply to Kaliber

Hey, Kal - 1.) Yikes, and I thought I hated the Xgeva side effects - but it doesn't seem to nearly as complicated! 2.) Have you always been on Zometa (zoledronic acid), or did you start with Xgeva (denosumab)?

Kaliber profile image
Kaliber in reply to SeosamhM

Oncologist put me on Lupron Xtandi Zometa day one and has kept me there since. 31 months. . Getting my 31st Zometa pain train today before noon. It’ll hit me before evening and ramp up over next couple days. Hangs a few then almost magically suddenly disappears. The mental effects creep up unnoticed , you don’t even notice they’ve happened until , nearly instantly like throwing a switch....they vanish and it’s a shiny , great, wonderful new day. It’s insidious that way. Yayahahahaya yayahahahaya It’s worth every agonizing pain tho ... very valuable for guys like me.

SeosamhM profile image
SeosamhM in reply to Kaliber

Amazing attitude, Kal!!... Now where have I heard...? ...Oh, yah...Blutarksy from "Animal House".... Go Delta...!

(Warning: Adult words...)

youtube.com/watch?v=cO9aXFs...

Kaliber profile image
Kaliber in reply to SeosamhM

I love John, he was my hero. Hardly anyone could do the dead pan humor like him. Killer bees ....classic. Ninja warrior .... blues brothers ... classic. He’s da man.👏👏👏👏😂😂😂😂

Hey! Long time no speak um.. ! Sorry he’s in that pain . I get prolia in two days. Towards the end my pain increases.. oddly I’m looking forward to the dammed shot . Dammed if we do, dammed if we don’t . ❤️❤️❤️

erjlg3 profile image
erjlg3 in reply to Lulu700

Namaste dear friend. I'm glad it doesn't take you down! I hope it helps your bones! I don't think lg will get it again unless his bone scan is bad. We'll see. Stay well🤗

Lulu700 profile image
Lulu700 in reply to erjlg3

I’m not sure what is helping or hurting me? Just grateful to be as good as I am . Peace and love ❤️

CSHobie profile image
CSHobie in reply to Lulu700

How is the pain on Prolia?

I can't believe the severity of the Pain from Zometa, really? And this is the treatment?

Kaliber profile image
Kaliber in reply to CSHobie

Not everyone gets the pain train from Zometa like I do. I’m told that like my PSA dropping from 1300-1600 to zero in a little over a month being a good sign , that powerful reactions to Zometa means its working its magic too. Its all good.

CSHobie profile image
CSHobie in reply to Kaliber

What pain meds are you taking on a daily basis?

Kaliber profile image
Kaliber in reply to CSHobie

I have Vicodin for the daily discomforts ( doncha love that word ) and pain squashing dilaudid for the ugly stuff. Kaiser makes me jump thru big time hoops to get them ( 5 dap tests last month alone, two blood, 3 surprise urine yayahahahaya) still I’m well supplied by them. Can’t complain they have my best interests in mind ( and covering their a$$es for the feds ) I’m on the federal opiate contract, just the slightest whiff of cannabis causes them to come unglued. I’m a retired biomedical engineer and 60s Berkeley hippie.... over the decades I’ve developed the chops to keep myself totally pain free if need be ... but I much prefer pharmaceutical grade medications. I may have flunked a few of my dap ( drug abuse panels ) that causes them to keep a wary eye on me yayahahahaya yayahahahaya. Cannabis is sold in corner convenience stores here , totally legal. But not at Kaiser World yayahahahaya.

erjlg3 profile image
erjlg3 in reply to CSHobie

Yes, I read there are rare cases of this pain. He said he can hardly still use his hands and fingers. He said any place he's ever had an issue like breaking 2 ribs, any place his cancer went to the bone and arthritic areas .... all hurt severely. He says each day gets a little less pain.

V10fanatic profile image
V10fanatic in reply to erjlg3

Funny, I seem to be having similar reactions to Xgeva. I've never had arthritis in my hands, but now some mornings I can't close them into a fist without severe pain. And, the ribs that received SBRT are definitely speaking to me again.

erjlg3 profile image
erjlg3 in reply to V10fanatic

Wow! Same with him V10.

Lulu700 profile image
Lulu700 in reply to CSHobie

I think it has improved. I’m due a shot tomorrow. The last three weeks I’ve had much joint pain. I ll see if it improves with the shot ??

erjlg3 profile image
erjlg3 in reply to Lulu700

I'm sorry you hurt. That's a curious test I'd like to know. Keep us posted LuLu.He was hurting worse today than yesterday in those areas. He's having a hard time bending too. I suggested he call the doctor. He won't.

🌻

Lulu700 profile image
Lulu700 in reply to erjlg3

I hate to hear lg is in pain . I was mistaken. I got my shot last visit. 🕊✌️

erjlg3 profile image
erjlg3 in reply to Lulu700

He's ok. So your pain is happening a month later? I sure hope it gets better. 🙏

🌻

Lulu700 profile image
Lulu700 in reply to erjlg3

It’s becoming constant . But hey ! Nobody promised us rainbows and butterflies . I keep my eye on natures beauty all around us . ❤️

You always see rainbows 🌈 Hugs.

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