Zoledronate Acid for MBC: My 2nd... - SHARE Metastatic ...

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Zoledronate Acid for MBC

sonycamera profile image
30 Replies

My 2nd treatment of Zoledronate acid administered via IV is coming up this month. My 1st treatment felt awfully similar to chemo for 2 days (YUCK). I recall reading about recommendations to reduce discomfort. i.e. slow down drip, take Claritin (when?) There were other ideas to ease the discomfort, however I cannot recall nor find it on Health Unlocked. All feedback and experiences welcomed.

Thanks. sonycamera. aka Kathy

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sonycamera
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30 Replies
kokopelli2017 profile image
kokopelli2017

hi Kathy.

I remember vividly how awful I felt those first couple days after getting my very first zolendronate acid IV infusion...four years ago. felt like I had been run over by a truck. so come time for the 2nd infusion, I was less than enthusiastic. but surprisingly, I didn't feel that bad the 2nd time around...just a bit achey. and I did not do anything different. after a few months, I no longer felt any side effects. yay!!

in discussing with my oncologist, she told me two interesting things....that the first infusion of this med is the worst. but she also told me that those patients who feel extremely crappy the first time around 'get better results' long term. I have no way to know if that's true and can't prove it...just sharing what she told me.

I think I have heard other women also say it gets better with time. hopefully other's will chime in as to whether they experienced the same?

I never did take the claritin because I didn't know about that back then and by the time I learned of it, I didn't need to pre-med.

wishing you a much better experience this time🤞. will be curious?

carole XO

sidenote. at my cancer center, which is not top notch like some others....the nurses routinely give the infusions over 30 minutes. nice to see they are doing 'something' that is pro-active for us.

sonycamera profile image
sonycamera in reply to kokopelli2017

Thanks Carole for your reply. It's encouraging to hear that the 2nd etc is not as severe. the 1st time it only took 15" to finish this time I'm going to ask to slow it down to 30" and take Claritin prior and after. Three days after the IV injection I leave the state to visit my daughter so I'm doing all the voodoo possible to ensure I'm fully recovered. Thanks again and wishing you a long and healthy life. Kathy🍎😄

kokopelli2017 profile image
kokopelli2017 in reply to sonycamera

fingers crossed Kathy that you will feel good to travel to visit your daughter🤞. my 'gut' thinks you will be fine. hope so! XO

Nocillo profile image
Nocillo

I’m quite tired for 2 days afterwards but on it more than 7 years now and no other issues. Fingers crossed 🤞!!!

Beryl71 profile image
Beryl71 in reply to Nocillo

I didn't know they gave it for that long. I thought I'd heard somewhere it was a three year programme. Will have to ask my oncologist. I'd hoped that after a period of time I'd be able to get my teeth checked again! x

urthmothr profile image
urthmothr in reply to Beryl71

I checked with both my oncologist and my dentist, and they both said it was OK to keep receiving dental work. The chief concern was to take care of dental issues before initiating the treatment, which actually didn't happen with me because I started chemo in a hurry because COVID was starting to cause problems in medical treatment. Also it was a recurrence of a cancer I had 2 years ago, which had metabolized.

Beryl71 profile image
Beryl71 in reply to urthmothr

Mine is a cancer that metastasized 26 years later. However I double checked with my oncologist and he said not to even have a check up or hygeinist clean. I will ask again at my next appointment. But it seems oncologists do have different ideas and opinions. I'd like to keep my teeth in good order if possible. But not if it jeapoardises my health and cancer treatment. X

kokopelli2017 profile image
kokopelli2017 in reply to Beryl71

hi Beryl71. hmmmm. you are so right that different oncologists have different opinions, my onc said it was totally fine to have routine teeth cleanings. in fact, she encouraged that. it was invasive dental work that she wanted avoided...root canal's, extractions, posts etc. I stopped the infusions all together after 3 years. carole XO

Beryl71 profile image
Beryl71 in reply to kokopelli2017

That's good to know. I'd heard three years. X

kokopelli2017 profile image
kokopelli2017 in reply to Beryl71

hi again Beryl.I stopped after 3 years by my own advice (wink) and with my oncologist approval! my jaw was starting to faintly 'light up' on my bone scan at the 3 year mark. didn't want to push my luck with the occurrence of side effects of ONJ. others on this site have also talked about stopping Zometa/Xgeva after a certain length of time....like maybe 3 years....to reduce chances of ONJ. it is a great med but maybe only for a certain length of time....and then perhaps the cons start to out weigh the benefits?? but no set guidance that I am aware of. different oncologists...different opinions on both dental work and length of time on med.but your oncologist is the only one I have heard of so far that discourages simple teeth cleanings. but maybe he/she has her own reasons?

XO

Beryl71 profile image
Beryl71 in reply to kokopelli2017

No idea, I will double check!

AuntC profile image
AuntC in reply to Beryl71

Hi, I've been told that a simple cleaning is ok. Just not a deep root cleaning or extractions. I've had two onc tell me that.

Nocillo profile image
Nocillo in reply to Beryl71

I get routine dental checkups and cleaning every six months. It’s invasive dental work they don’t want you to have done. Unless you have some special circumstances?

Beryl71 profile image
Beryl71

Yes I felt very tired after first one, but after that ok. I'm on three monthly now and take it in my stride. Good luck. X

susiemarmite profile image
susiemarmite

Run the drip for 30 mins not 15.

8576 profile image
8576

I am in Canada so don't know if the meds are the same but I take a pain killer every morning (mostly tylenol) and for 15 mins. I never had any side effects that I noticed.Wishing you all the best,

Cheers, June S.

urthmothr profile image
urthmothr

I get Zometa every 6 weeks with no discernable side effects, but I first started receiving it during my chemo, so I might have gotten used to it. Now I'm receiving it with Perjeta and Herceptin.

urthmothr profile image
urthmothr in reply to urthmothr

I seem to remember that at one point I took a "vacation" from Zometa so I could have some invasive dental work taken care of, then resumed it after my gums healed.

Cowgirl1951 profile image
Cowgirl1951

I am sensitive to meds. Since 2013 I get Zometa IV every three months. I avoid scheduling anything for 10 days afterwards. I receive fluids after the Zometa. I discussed the Clariton with the nurse. She said to start five days before the Zometa treatment. Hugs.

morty87 profile image
morty87

I feel like the infusions get better over time. I was on a monthly drip for over a year and now I am on quarterly infusions. I’ve had really good results. I take a daily Claritin to help with bone pain. Hopefully your body will be able to acclimate over time as well. A simple Tylenol can help with pain. Good luck.

TwithBC profile image
TwithBC

I slow down the drip to 30 min. But, I have also done 15 min drip and feel normal; the first time was the worst and I know it was for many many people. (I got so sick like you -- threw up when I woke up the next morning ;fever, chills -- so bad). Take care.

Bettybuckets profile image
Bettybuckets

I remember that was what I didn’t like about zometa… and I switched to xgeva which is a quick shot. Very glad I did. Chemo will be on the agenda some day but I don’t want to experience that again until I have to.

PJBinMI profile image
PJBinMI

I was on Zometa for several years and I remember that the first couple of infusions left me feeling zonked out, but also discovered I was allergic to it...had quite a reaction the 3rd or 4th infusion, so I had alot done to make it tolerable for me as the only alternqative then was another IV med I was also allergic to. I received Iv benedryl and hydrocortizone before getting 1/2 dose of Zometa, given over 2 hours instead of 20 minutes, with extra fluids. Make sure you are well hydrated before your infusion and you could take an oral benedryl or two also. Ask the nurses adminstering the meds what they suggest for easing the experience for you. They may be able to ad fluids or slow down the drip on their own. But know that it may get easier after the first 2 to 4 treatments, too, but don't let that stop you from letting your treatment team know how this is impacting you. One thing I miss about those infusions was the chance to sit and chat with other patients in the infusion room--long time ago before some "patient privacy measures" were put into effect.

Totheriver profile image
Totheriver

My first treatment was terrible. Felt like I had been run over by a truck. They told me to be well hydrated before you come and after. Also take a couple of Tylenol. And they slowed the drip down. My next ones have been fine. I did not feel any different. Hope it goes well for you. Theresa

marianne88 profile image
marianne88

Yes start taking Claritin 2 days before and 2 days after. Ask the nurse to give you the zometa over 1 hour time. It does help for sure

sonycamera profile image
sonycamera in reply to marianne88

Hi Marianne: Thanks for the Claritin tip. I'll definitely do 2 before and after. Wishing you well. Kathy

AuntC profile image
AuntC in reply to marianne88

Hi Marianne, I do exactly what you do & I no longer feel bad on the third day after as I used to. I'm now on my third year & get it every 3 months.Carolyn

Laskia profile image
Laskia

I did read that getting a strong reaction on the first injection was a good thing and that your body is responding to it well. It should not happen on subsequent treatments. I didn't get any reaction and felt disappointed that it was maybe not working as well for me!

Dragonfly2 profile image
Dragonfly2

Kathy ! You've gotten some good recommendations and suggestions from the ladies. So, it does get easier over time...I just had my 14th infusion yesterday and never even felt any different...maybe more tired but that seems tobe my MO with anastrozole and Ibrance treatment ongoing.Do take the Claritin for several days before and after...I just take it all the time now because it is helping with bone pain (MBC to the bones) and it also helps with the general summertime allergies.

Try not to stress about the Zometa infusions..they do an amazing job to rebuild bone lost to tumors and the estrogen depletion. Generally speaking the treatments go on for about three years (in my case) , monthly the first year and then two years of quarterly infusions. My pelvis was saved by this stuff...and I can walk and feel pretty normal.

Best wishes for your treatments and prognosis!

queeneee profile image
queeneee

Hi Sonycam, as an aside, you know that you can take daily ibandronic acid tablets instead of having injections. It is an old fashioned way of doing it.. however it has worked for me for 2.5 years - bone mets stable. I didnt want more injections and hospital visits.

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