Any Zometa Patients experience side effects?

Is it a jaw bone issue and could you share how many infusions you’ve had. I wasn’t aware of any side effects related to hair loss but these drugs very powerful. I was so hesitant about Zometa even though often recommended as I have invasive lobular breast cancer but I opted for weekly pill, Fosamax but I’m not sure it gets adequately absorbed. Have you experienced any improvement in your DEXA numbers? Xoxo

I've had 2 infusions and just cancelled the 3rd because of bone loss in most teeth and I now must have periodontal anti-bacterial treatment. Arestin is the dentist choice for treatment. It has not been studied in patients with weakened immune systems and I have undifferentiated connective tissue disease. I am trying to get more information on this product.
Hair loss, brittle finger and toe nails with very dry cuticles even if I wear gloves for house work and sleep with Cetaphil and cotton gloves . Don't have new DEXA numbers

Zometa ( Reclast but stronger) is regarded as a possible guard against bone metastasis for breast cancer thrivers. Wondering how people are handling the infusions and any side effects. Thank you 🌸

Hello @anjalima, I combined your discussion with an existing discussion started by @maryjillian, titled "Any Zometa Patients experience side effects?" - https://connect.mayoclinic.org/discussion/any-zometa-patients-experience-side-effects/.

I'd like to invite @moverland, @semurrey and @katgob who have all mentioned zometa on Connect as well. It is important to remember that side-effects with these powerful drugs can vary greatly from patient-to-patient and it is important to note any possible effects you are feeling to discuss with your provider.

@anjalima, if you are comfortable sharing, is Zometa the medication you and your provider have decided to go with? Is there a particular side-effect you are most concerned about?

Thank you. Under consideration with oncologist.

Hi! Thanks Justin! I recently had my first Zometa infusion and started Claritin a few days before (nurse suggested) and stayed very hydrated and took Tylenol a few hours before infusion. I was tired with a headache for the first few days and got back to myself in probably 5 days. I will another in 6 months at Dana Farber. I am most worried about my ILC mets to bones so am going with what my onco recommended. I did do a lot of soul searching before taking (Fosamax too hard on my GI -I tried it for 8 months) the Zometa and got myself so worked up but it came down to risk/benefit for me. Good luck and I will certainly circle back after my next scheduled Zometa infusion in April. Best of luck xoxox ps @windyshores is so knowledgeable - search for her posts!

Thanks for the information. Yes, Windyshores is quite knowledgeable on this area of research. But I don’t think Zometa was prescribed for her.

I was wondering … infusions every 6 mos but for how long? And if stopped does something necessarily follow?

My bones don’t need this ( at least not yet) at 74 … it’s a BC anti recurrence concept for me as well.

The never ending journey!

Thank you!

A very good question and I am always in "awe" over the lack of consistent info on this. My oncologist at Dana Farber had me schedule the second infusion 6 months out and my understanding is that I would stay on this schedule for 3 yrs so 6 "zometa infusions". In 3 yrs (god willing no mets) I would have been on Letrozole 5 yrs - so I guess we would "re-evaluate" - very hard for me as I like to have a "plan" - like when is the next DEXA to determine if this zometa is working????? I'm 59 yrs old - for ILC it sounds like Letrozole timeframe maybe extended to 8-10yrs??? Not sure this helps but good luck. Remind me did your ILC reoccur?? I feel early detection is only way to find it and Letrozole side effect is stiffness, joint pain so no clue - hate this "wait and see" attitude. oxoxo

My IDuctalC ( not lobular) did recur locally… a “ rogue cell left behind” surgically removed with clean margins… was small 6 mm reduced in stage and grade to 1 and much reduced KI67 so… Anastrazole was working … to a point… keeping it low proliferation. But as it did recur at all I’m switched to Examestane… which had me worried as I get almost zero side effects with BRAND Anastrozole “ Arimidix” . So far it’s ok too but it’s early with no break In between… smooth transition I hope. Also this time radiation was highly recommended by 4 onco opinions ! So I did that.

I found the module myself between my skin and implant. Don’t underestimate self exam.

Onco suggesting zometa and I’m looking into it… and what may need to follow it. I have moderate osteopenia at 74 so it’s not really for my bones it would be to ward off the possibility of bone Mets down the road…

Looking into a study that analyzes bone marrow for so called sleeper cells. Study out of Penn Medicine . Dr. d’ Michelle wrote an interesting piece on this.

Thank you for your response.

Thank you for the Zometa chat. End of Jan 2025 I have my 3rd Dex. Jan '24 dex was minus but another area was a small +. City of Hope's oncologist was surprised of the improvement. I refused Zometa infusion because of I felt my homeopathic stash was what changed the dex. If 2025 dex is not in my favor, I need to know the long-term side effects. 3/2022 Mastectomy stage 2 breast cancer. The only med I am on in my Zole (Anastrozole 1 mg). I wish all staff would document the patient's side effects and stop stating patient was not compliant without stating why the a delay. Fight fight until flight! Will return asap with proper info.