Any Stage 3 taking Zometa with their AI meds?

Anonymous

Any Stage 3 taking Zometa with their AI meds?

DodgersGirl

reading about Zometa (a bisphosphonate) and how studies are showing that taking it with your AI helps prevent bone mets.

Anyone already taking Zometa as a mets prohibitor??

sbelizabeth

Hi, DodgersGirl. Yes, there are a lot of us. I started with Zometa and received one infusion in 2015, and then she switched me to denosumab (Prolia), which is a simple injection. Same concept as the Zometa for preventing bone mets.

The Zometa made me achy and fever-y. The denosumab has no unpleasant side effects that I've experienced.

DodgersGirl

sbelizabeth- thanks for the reply. I asked my MO about adding Zometa earlier this year but she didn’t seem interested in it as a standard process. But I have read more and more about studies showing it helps. I have asked again, this time sending links to studies

Anna-33

Zometa every sixth month.... zoladex and aromasi

DodgersGirl

Anna-33, thanks for the reply. Your dx date is very close to mine. When did you start Zometa?

Lexica

hi, dodgersgirl, I startd prolia on March of this year, originally for the reason you mention (preventing mets) but I discovered after a dexa scan that I also have mild osteopenia, which can be treated with prolia. I have to echo sbelizabeth, I've only had one shot but no side effects. I think bisphosphonates are becoming standard of care for breast cancer patients.

Annbee

Hi Dodgersgirl, When I had chemo my mo mentioned it but hasn't since. Last week she asked if I had a Dexa scan. I went to the gyno today (first time since diagnosis. I needed a new one) and I now have a script. Thank you for reminding me to ask my MO about it. I think going on it will depend on the scan results. I want to do everything I can.

DodgersGirl

Annbee— I am right there with you on doing whatever is possible to try to stop mets. I had my dexa scan in January which showed great bone strength numbers (before starting Anastrozole) Finding my MO hesitant to start bisphosphonates due to SE like ONJ but push forward, I shall

Lexica— thanks for the info. May you have great success with Prolia

sbelizabeth

When the research first came out I started hounding my MO, and she needed convincing. So did my insurance company, since the Prolia shot is expensive. I reminded the insurance carrier's "nurse navigator" (in this circumstance, a friendlier term than "automatic denier") that if my Stage III BC goes metastatic they'll pay a lot more than the cost of a shot of Prolia twice a year.

DodgersGirl

selizabeth— that will be my luck... get MO to say yes while insurance will then say no.

PreludeSing

Hi ladies...I am about to start Zometa infusions on Monday July 9. My onc says research for Zometa is slightly better than for Prolia...I am tending towards asking for Prolia because it is just a shot like my zoladex which I seem to tolerate well....and psychologically (dumb, I know!), the word "infusion" (which I no longer associate with herbal teas and aromatherapy!) and having my port accessed is going to be tough for me...

DodgersGirl

PreludeSing— please let us know how it goes for you. I laughed at the reference to no longer associating “infusion” with herbal teas!!

stephilosphy00

Hi ladies! I am debating about getting Zometa or not because I have read some studies showing they can't not prevent bone mets. Any thoughts?

Magnolia-mom

I found a study that showed Zometa decreases risk by about 3%. I asked my MO about it last visit and he was fine with me going on it. He said it is easily tolerated. He also said it is not standard care and may not be approved by insurance. I'still months away from starting AIs.

https://www.verywellhealth.com/bisphosphonates-for-early-stage-breast-cancer-4153982

sbelizabeth

He's right; it's not standard of care--yet. And it depends on which study you read, as to how effectively a bisphosphonate can help prevent bone mets. With my Stage III diagnosis I'll take all the help I can get!

There is a small, but real, risk for osteonecrosis of the jaw with these drugs. It's more of an issue when dental work is done deep in the bone of the jaw. Very meticulous dental hygiene seems to help.

sbelizabeth

He's right; it's not standard of care--yet. And it depends on which study you read, as to how effectively a bisphosphonate can help prevent bone mets. With my Stage III diagnosis I'll take all the help I can get!

My California (UCLA) MO stays on top of research and was aware of the early studies that showed Zometa or Prolia makes a difference. My sister's Colorado MO will not prescribe it for her.

There is a small, but real, risk for osteonecrosis of the jaw with these drugs. It's more of an issue when dental work is done deep in the bone of the jaw. Very meticulous dental hygiene seems to help.

DodgersGirl

in April, when I asked MO, she brought up the dangers of ONJ. While that is a real side effect, I wanted her to look at the possibility of staving off bone mets. I am going to pester MO and see what happens

Ausykaren

Yes I am taking zometa with my Al meds. I started off on prolia but last time I saw my oncologist she said lastestresearch doesn't support prolia to reduce bone mets but zometa does, so I changed to zometa.

DodgersGirl

Ausykaren- thank you for sharing. Hoping I hear back from my MO this week!

meg2016

I do Zometa every 6 months, started my first one 6 months ago and will do a total of four. My MO says it has been very promising in their practice and looking at studies (I am at Dana Farber.) The side effects of my first infusion were tough, going to talk to her about pre-meds and other options this time. It was about 48-hours of feeling like I had the flu (which I guess is what they mean when they say "flu-like"symptioms possible) but it really wiped me out.

DodgersGirl

heard back from my MO. No Zometa as it isn’t part of the NCCN guidelines fir treatment since my Dexa scan showed my numbers to all be good

7of9

Zometa every six months - Cleveland clinic standard protocal to prevent mets. I heard it was 27% lower mets to bones (maybe no reduction in other places but bones is what...40 - 60% likely first?) It is no big deal. Short infusion. Some aches - sometimes worse but I get a script for 5 - 6 vicodin and may stay home the day after. I have only had to do that one time out of 4 infusions so far. If no kidney damage or no sign of that jaw problem, I will bug the crap out of them to keep on it.

sbelizabeth

Question--how many total doses of zometa or prolia are recommended for us? Every six months ad infinitum?

Lexica

My oncologist said she would put me on a break after 2 years because of the side effects. I can't remember exactly what she said but I got from it that your body needs a break from it because it's a pretty harsh medicine.

DodgersGirl

since my MO said no to Zometa, I bought Marine Collagen Peptides today after reading reviews on how it has helped customers with osteopenia. My thought was maybe this stuff will help keep my bones strong and MAYBE makes it harder for stray cancer cells from finding a home in my bones???

alaskalady

I’m 10 years out and still take arimidex and get zometa infusions every 6 months.

Sophiemara

I’ve been on zometa for the past 3 years. I have it administered every 6 months. I do find after the first few days I get side effects and always think maybe I’ll ask my oncologist if I can come off it, but then the side effects ware off and I stick with it. Arimidex diminishes bone density, so I figure it’s worth it and the evidence supporting reduce risk of bone mets.

JoE777

Hi ladies, I'm peeking in from the metastatic thread and found this conversation about zometo. When I was diagnosed with mets to the lower back and lungs I immediately started steroids and radiation to the back to relieve pain and zometo infusions once a month. I began march 21 in a wheelchair. I've had 6 infusions and been out of the wheelchair sinceJune. It pulled me back from the abyss. As I've improved the side effects have lessened but kisqali and letrozole are kick ass for me. After my September infusion the onc may spread mine out every 12 weeks and then further if I continue to improve. Pet scan shows bone actually looking like it is being patched. Long story short. It saved me permanent loss of bowel and bladder control, I couldn't walk, eat or sign my name. I think I'll be on it for the rest of my life. Some of you may be looking down the road of uncertainty but I can tell you it really cleaned up my bloodstream and repaired my 69 year old spine and back. Hugs and peace.

DodgersGirl

JoE777–. Thank you for sharing your experiences!!

My MO is retiring this year so will ask my new MO (unknown who that will be yet) once again about Zometa.

PreludeSing

bumping this. doing zometa tomorrow and freaking out a bit cos I hate the thought of feeling sick... was supposed to do in july but did my lymphoedema op instead.

shall post to let you know how it goes!