New here and Zometa ?

[kbrad]

Hi! I'm 48 and was recently diagnosed with Stage IV MBC in March (amidst all this lovely Covid craziness). I'm currently on 100mg of Ibrance and 2.5 mg of Letrizole, and had ovaries removed in July to throw me into menopause which has been lovely. My Onc wants me to start Zometa infusions but I keep reading such scary stuff about this drug. Can anyone tell me their personal experience? I keep putting off the treatment because I'm afraid of the whole jaw disintegration thing.

[Hidden]

Hi kbrad! We have a lot in common so maybe I can help a little. I am also in my 40s, had ovaries removed, and I’m on exact same dosage of letrozole and ibrance. I did a couple of rounds of Zometa but I’m now doing monthly xgeva shots because I hate iv’s. I haven’t had any problems with it. I think as long as you don’t have a lot of issues with your teeth or don’t have surgery on your mouth you should be fine!!

Maybe others will have more insight.

Mandy

[kbrad in reply to Hidden]

Thank you Mandy My Onc never mentioned Xgeva. I have Kaiser so I wonder if they don't even offer it?? I'm definitely going to ask him about it.

[klhowe in reply to kbrad]

I have Kaiser. I had Zometa once but didn't like the flu like symptoms. I get Xgeva monthly.

[kbrad in reply to klhowe]

Oh great... thanks!

[Red71]

I’ve been on Zometa for about 2 years with no problems. If you have not had any previous bone problems and you get a clean bill of health on your teeth at this point you should have no problems.

I’m sorry to welcome you here, because no one wants to be here. But you will find a great group of ladies that are willing to share their experiences and help a much as they can. They are very supportive and accepting of your feelings and decisions. We all have different ways we approach this big change in our lives. We are also a very diverse group from around the world working with different medical systems. Many Americans, but also English, European, Indian, and others. I’m sure I’ve forgotten some!

Welcome and hugs from the Western US.

Elaine

[kbrad in reply to Red71]

Hi Elaine! Thank you for the welcome. It’s definitely comforting to communicate with others who are going through the same stuff. I had another word for it but wasn’t sure if I should post it lol. I’m also out west... SoCal

[Ssm2019]

Hi kbrad,

My mum (58) also has something similar not sure if the same called denosumab (has same effects on jaw) this is only if you have problems with your teeth (Oral problems) my mum went to the dentist first got an all over some teeth taken out and then started 18months ago and no problems with her jaw or any side effects maybe a little pain at injection site but apart from that all is well. Wish you all the luck with your treatments take care

Faye x

[kbrad in reply to Ssm2019]

Hi Faye... thank you for the post. Will definitely be making that dentist appt

[KMBL_]

I just had my second infusion of Zometa. The first one was rough, a lot of bone pain and sleeping for 2.5 days with the flu-like symptoms. Was fine after. This time they infused for an hour instead of a half hour. Much better. Was able to function normally.

I went to dentist first and had a full checkup.

[kbrad in reply to KMBL_]

Hi KMBL... thanks! I definitely see a common thread here with the dentist.

[8576]

Not sure if my experience will help as I am much older than you. (80 yrs.) but I have had Zometa for over 5 yrs. with no problems at all. MBC with bone mets.

Cheers, June S.

[kbrad in reply to 8576]

Thanks June 😊

[Teddielottie]

Welcome on here and I wish you well on your new treatments . Do you mind me asking where your mets are ? I am 56 (but had gone through natural menopause at diagnosis of bone mets de novo at 53 ) and on Ibrance 125mg/Letrozole (will have been on these 3 years in December ). So far , I haven’t taken zometa or Xgeva , but may do so in the near future . I have Adcal (vitamin D and calcium ) prescribed too . As the others have said , get a dental checkup and any dental treatment before you start on any of the bone strengtheners. x

[kbrad in reply to Teddielottie]

Hi Teddielottie! According to my PET scan the majority of my Mets are in my pelvic/hip bone area and lower vertebrae. They suspected areas in my lung but my biopsy came back inconclusive. They also ended up puncturing my lung during the procedure so I’m not too keen on going in for another one. 🙄 Thank you for your response 😊

[Teddielottie in reply to kbrad]

Mine were mainly in two areas of pelvis and tiny foci on spine and I have been stable for a good while . Sorry to hear about the lung injury tho ‘ . But hope you soon get some good results x

[kbrad in reply to Teddielottie]

Thank you ❤️

[Teddielottie in reply to Teddielottie]

I have Adcal vitamin D and calcium tablets prescribed by my onc ... do always check with your medical team if you actually need calcium supplements if buying them online, as some people shouldn’t take them and could result in hypocalcemia . Take care ! x

[Rhwright12]

Hi Kbrad! Been on Zometa for a little over 4 years now. I moved it to every 3 months. I’m not excited about the fact that it stops the osteoclasts from working. Good short term gain but not sure about it long term. It has only been studied in older patients for osteoporosis use for 3 years only.

We’re actually a clinical trial here 😱 That being said I’m thinking of moving mine from 3 to 6 months. Also my last Bone scan in June showed bone marrow growth from the inside out...Most likely from the AlgaeCal I take. It’s plant based Calcium and Strontium pills. They prescribe it in Canada 🇨🇦 for osteoporosis. When I was in my organic phase I found it...It took a year as they said at least 2 complete bone growth cycles of 13 weeks to show progress...And now I have real bone growth from the inside out not just bone hardening from Zometa...😀

[kbrad in reply to Rhwright12]

Hi! Oh that is awesome! I have heard of Algaecal and was actually looking at it on Amazon the other day. I was taking another supplement from Garden of Life but I think I’ll switch. Thank you for your response and I pray your bone growth keeps improving 🙏🏻😊

[Rhwright12 in reply to kbrad]

I’ve used Garden of Life also...We don’t have AlgaeCal in the US...So that’s our version of it...Vitamin Shoppe carries that...They also just came out with an Algae based calcium pill...Basically stealing the formula 😱😂🙊

[kbrad in reply to Rhwright12]

Oh gotcha ok 😊

[kduck in reply to Rhwright12]

Where do you get your AlgaeCal?

[Rhwright12 in reply to kduck]

U can get “real” AlgaeCal from the internet...It ships from Canada 🇨🇦...Or Tree of Life brand ships from Amazon or Vitamin Shoppe and probably others...Or u can copy their formula and Mg amounts and buy Organic/plant based Ca (around 520 mg) and Strontium....😀

[Barb5]

I was on Zometa for 4 years I never had any jaw problems. I believe the biggest concern is having dental work done while on Zometa but you should fact check that. Good luck to you

[kbrad in reply to Barb5]

Thanks...good to hear.

[Hidden]

Welcome. My dentist told me that onj is very rare from taking our meds. In saying that I know a few ladies on here do have it. I have Denosumab injections, and for me they help with pain relief - or did at the beginning when I had pain. Very little pain now.

I am 51 and have injections to put me into menopause.

I hope you get the right treatment for you

Clare x

[kbrad in reply to Hidden]

Thank you Clare❤️

[Hidden]

I’ve had these injections for 2 years. Ask the nurse to use the slower injection pace which makes a big difference for me in avoiding flu like symptoms. I find it quite manageable. Good luck

[kbrad in reply to Hidden]

Thank you ❤️

[Lilykristymichael]

Dear I rad: I have been on Zometa for a little over a year(every three months) and had no side effects. My oncologist weighs the benefits of this med against the possibility of breaking a bone. I have to trust her as I am not good at research myself. All our meds have scary side effects but thankfully they are rare. I wish you the best in your decision. Cheerio, Madlyn

[kbrad in reply to Lilykristymichael]

Thank you Madlyn ❤️

[Arisgram]

I had my infusion today. Truly, I never even notice it. I drink a good bit of water just because I read you should. It isnt bad at all. I've had no jaw problems after 18mos. Good luck with your treatment! Andi

[kbrad in reply to Arisgram]

Thank you! Good to hear that ❤️😊

[Hidden]

Hi,

I have been having zometa infusions every 12 weeks since June 2018, and have not had any serious issues. I felt a bit stiff on one occasion, which may not have been down to the zometa, but I am mostly fine. There is a risk of osteonecrosis, but it seems to be quite rare. I would recommend you drink lots of water on the day of infusions. On the morning of my infusions I skip my morning dose of Adcal D3, as it could result in an overdose if you take the supplement within four hours of an infusion of a bisphosphonate. That's mentioned in the leaflet that comes with the supplement. But overall, I would recommend zometa. You can drive and carry on as normal right after an infusion. It isn't like having chemotherapy.

Sophie

[kbrad in reply to Hidden]

Thank you so much Sophie ❤️ Makes me feel a lot better hearing some of these positive experiences.

[Hidden in reply to kbrad]

You're welcome. This is one of the easier treatments! Unless you don't like needles and cannulas! I look forward to my infusions because a lady comes round with tea and I sometimes get to chat to other patients and nurses. So I normally regret having to get up and leave as I am having such a good time.

Sophie

[kbrad in reply to Hidden]

Love that! 😊❤️

[Hidden in reply to kbrad]

I probably sound like a fruitcake, but I do enjoy the social aspect of zometa infusions and getting to chat with people.

[kbrad in reply to Hidden]

No not at all!! Lol. I get high dose vitamin c infusions and have met some wonderful people that way!

[Hidden in reply to kbrad]

That's good! I hope you are benefiting from the vitamin C infusions.