Zometa Plus Six Months

[Sky_Writer]

Had a bad reaction to my first Zometa infusion six months ago. It's time for another round. I have read that subsequent doses are usually easier, or my Onc might try something else?

Does anyone have experience with Round 2 or a substitute med?

[Sky_Writer]

In my case I have what looks like healed a metastasis on the T12, so I think the 6-month plan is for control. But, I will ask. Did you have a subsequent infusion that went too fast, and without proper hydration?

[Bestbird]

Xgeva, which is administered via injection, is a viable alternative to Zometa. It would be worthwhile to check on insurance coverage.

With good wishes!

[Buffwright]

It’s remarkable how different experiences are! I had no reactions to Zometa—was on it monthly for a while and then quarterly for 3.5 years along with Ibrance and Letrozole. Sorry you’re experiencing SE.

[Andersl]

I had a reaction to pertruzamab. Its been managed by giving me steroids and antihistamine infusion before each treatment.

Although a different drug, the management option may be valid.

Hope this helps

Xx

[Hidden in reply to Andersl]

Hi, just interested as to the reaction you experienced, I'm wondering whether I have a 'bad' reaction to it also. Thanks

[Andersl in reply to Hidden]

My temperature suddenly dropped and I started shivering uncontrollably as if I was sitting in a freezer!

[Timtam56]

I’m following all this. Gosh you women are so collectively helpful.

I'm sorry your help is sometimes at the cost of your comfort or health. But geeeez it is so helpful.

Thank you.

❤️

[stardust1965]

Hi Sky_Writer, I also had (the usual?) reactions to my first Zometa infusion back in December 2018 and ended up in A&E because of a high fever. It was out of hours and if I’d been able to contact my BC team I could have avoided the dreadful A&E experience.

I had monthly Zometa after that and now have it every three months and have not had any further issues.

I am grateful for the huge improvement of my back pain (3 spots on my spine) thanks to these amazing drugs.

I call Zometa my “bone juice”. 🍷😁

[Mustangs2022]

I got Zometa monthly for a year, and I'm now on every 3 months. I haven't had any problems. They did recommend that I take an allergy pill to help with side effects. I take the generic Claritin (loratadine). I'm also on Fulvestrant and Afinitor. I was on Ibrance before, but it wasn't working as well as Dr. wanted. I am having a few side effect issues since I started the Afinitor. Best wishes for you.

[morty87]

I discovered that Claritin daily helps with the side effects of bone pain with Zometa. Good luck!

[ChrisVict]

I’m on Xgeva and do not have any issues with side effects on the other hand affinitor have mouth sore, neck rash and breakouts here and there!

[Blondslovelife]

Hi, I have had 3 zometa infusions, first 2 I had back pain & used a heating pad & otc pain med. For no 3 I took claritin allergy, 2 hrs before infusion & had NO pain! I read that tip on here for chemo & someone else tried it for zometa & also had no pain. I buy generic from dollar general, real cheap. Best wishes to you.

[Blondslovelife in reply to Blondslovelife]

P.S. My infusions are every 6 months.

[Lilykristymichael]

Hello Sky_Writer:

I too had a bad reaction to

My first Zometa infusion. My oncologist says this often happens. I have had 5 more and felt fine after each one. I get them every three months. I would try the next one and see how you react . I am sure your oncologist will consider something else if you have more problems. Best wishes.-Madlyn

[JeniMcC]

Hi Sky_Writer,

I also had a terrible reaction to Zometa that my team at MD Anderson told me was not normal, so I was switched to monthly Xgeva injections, which has been great. I keep myself very well hydrated, with at least 1 liter of water every 2 hours. I felt tired for the first 5-6 hours after the Zometa infusion, the at hour 7 I started with severe body aches, severe pain in the extremities and a fever that peaked at 101F that I had to manage for 3 days (cold showers, no blankets, etc. to avoid an Emergency Room visit during Covid). I did have antihistamine along with the infusion, which are usually fine for me and cause no reaction other than fatigue. The most remarkable symptom was that I couldn’t move and needed help from my husband to get up to go to the bathroom and to eat. I hike in the mountains every day, so I am very mobile and independent despite the metastases. This extreme symptom of weakness bordering on paralysis lasted about 12 hrs. Overall, it was worse than any chemo I’d ever had, and truly made my week off from Ibrance just miserable. When I was switched to Xgeva, I was instructed to take Claritin the day before, the day of, and the day after the Xgeva injection. This protocol was great, and I only suffered very mild symptoms of fatigue for a few hours after the injection. I just had my third round of Xgeva a few days ago. I forgot to take the Claritin, and noticed the fatigue is much more this time (although I must admit that I am stressed because it coincided with the U.S. election on Tuesday). I am doing my normal routine of daily hikes and working normally.

I have asked both my local oncology team in New Mexico and my team in Houston about my reaction to Zometa and why I had such a severe one. They say that the reaction was definitely concerning, especially considering the thousands of patients they have seen. My latest scans show shrinking metastases and that the bone is filling in nicely, so I am pleased with the Xgeva. I hope this helps!

Sincerely,

Jeni

[Sky_Writer in reply to JeniMcC]

Yes Jeni, that helps a lot. Your symptoms sound very similar to what I experienced. I'm glad your scan showed improvement. I haven't had a bone scan or dexa yet to compare, but I'm hopeful that even following the Zometa reaction, that I've had improvement. I've certainly had less bone pain/ache, so hopefully a different bisphosphonate will help to continue this line of therapy. We'll see, eh?

[JeniMcC]

I am so glad that my experience is helpful. Keep me posted!

Sincerely,

Jeni

[Dragonfly2]

Hi! Ive had three zometa infusions and all have been pretty benign...yes, hydration is key...drink while you are undergoing the infusion and continue to hydrate after. I get it every month ... I’m sick of the IV pokes...and blood pokes...but that’s life with a chronic illness. I hope your second is better...it’s key to rebuilding bone and preventing catastrophic breaks that could put you into a bed. Stay well..

[Cowgirl1951]

I am in Virginia, USA. 69 yr old. I started Zometa in 2013 every 3 months. I had flu like symptoms. My onc added IV fluids after the Zometa which adds approximately 2 more hours to the Zometa treatment but I feel that it helps. The mets cleared up until late 2020 when they appeared on my sternum and T5. Had 3 radiation treatments which cleared up the mets. I am on Ibrance 100mg. I had a lot of fatigue with Ibrance 125mg. I used to like to dance the East Coast Swing and Cha Cha but I can't now. I try to walk at the mall during the week when not many are there. Thank goodness there are chairs and benches to take a break. I used to walk the whole mall in 20 min. Now it takes me 50 min to walk half the mall. Lucky me to received my 2nd dose of Pfizer Covid vaccine yesterday with no side effects. Hope this info is beneficial.

[Kdiet]

I take a Claritin a couple of hours before the infusion and then I take 10K calcium 2X/day for five days.