Do you ladies take a bone strengthener?

[Flower1513]

Mom’s oncologist would like her to take one. She doesn’t want to do it. She is currently on enhertu. What’s your thoughts on it. If you don’t mind sharing. Is it worth it? Do you feel bad on it? Is one better than the other? Anything natural that’s helped? Thanks so much ladies❤️.

[Yikes123]

I wonder why she is reluctant. I get fulvestrant injection every month for my bones.

[Flower1513 in reply to Yikes123]

I think she read side effects. Some said it can cause bad bone pain?

[Yikes123 in reply to Flower1513]

That’s not my experience. The shots themselves hurt. I use as heating pad when I get home. I am fine the next day

[HelenWi in reply to Yikes123]

Fulvestrant is not a bone strengthener, it’s a receptor degrader, it fights HR+ breast cancer. Did you mean to say Xgeva?

[MetaMuriel in reply to HelenWi]

Agreed. Fulvestrant is not a bone strengthener, it's just a little easier on the bones than other receptor degraders. She must have meant Xgeva or Zometa or some of the other bisphosphonates. They definitely help strengthen the bone but they also can cause OsteoNecrotic Jaw (ONJ), especially when given monthly for long periods or if you have had Prolia or any kind of bisphonate previous to Xgeva for osteoporosis previously. The bone strengtheners can also really reduce pain but they do accumulate in your body, and once you have ONJ, even a light case that doesn't even cause any problems in the mouth, like I do, you cannot take these drugs again. I am on Xgeva/letrosole, moving to Verzenio/letrosole, and only had three shots of xgeva over the period of a year or so, but had been on prolia previous to mBC diagnosis for many years. Started having tiny pieces of jawbone come through my gums. My jaw is totally stable but now I have very few medication options for osteoporosis/osteolytic cancer in the spine, and considerable back pain. Looking at Tymlos and Forteo but don't have an answer from the endocrinologist yet. So in short if Xgeva is recommended I say take it, but drop to every 3 months, and then every 6 months as soon as long as you are not having substantial pain. An d yes, keep up your dental hygeine. And if anyone knows some other options that work to strengthen bones and don't cause ONJ, please let me know!

[TammyCross in reply to MetaMuriel]

Xgeva worked miracles on my bone mets, but onc kept me on it too long at too high a dose and I resisted but not hard enough, got ONJ pretty badly, and now cannot take Xgeva or a biphosphonate. Mets in my bones again -- not much and seem responsive to my cancer meds, but not like Xgeva.

Can you say more about Tymlos and Forteo?

[Yikes123 in reply to HelenWi]

You are correct. Thanks for catching this. I meant to write Zometa. .

[Beryl71 in reply to Yikes123]

I have fulvestrant with ibrance. But the bone strengthener is zolondronic acid or Zometa.

[ELF5068 in reply to Beryl71]

I’m on the same treatment program of Ibrance and Fulvestrant, with Zometa every 12 weeks, for nearly 5 years. So far so good! Tumor markers fluctuate a few points and scans show no further disease progression.

I hope you’re seeing good results also.

[Beryl71 in reply to ELF5068]

Positive all round at the moment thanks! X

[BettyBoop3000]

I get quarterly Zometa infusions to strengthen bones. It is also said to have some anti-cancer properties. Since I now have osteopenia I do it to avoid fractures. The side effects only last 2 to 3 days. After that I’m fine.

[HelenWi]

I’ve been getting Xgeva injections from day 1. Recently I had a consultation with an orthopedic oncologist about another matter but asked about Xgeva, and she said I should keep getting it.

[Discocat]

I'm 3.5 years since diagnosis with extensive bone mets. I used to have Zometa IV infusion every month for the first 2 yrs. Now I have it every 3 months.I highly recommend...especially if she has bone mets...it helps to create a more hostile environment for tumour progression as well as strengthening the bones.

I only experienced bone aches with the first dose....it felt like flu pains.

The first time it's given it is administered more slowly...over 30mins period and you should take a couple of paracetamols and drink lots of water.

Follow up doses usually take 15 mins approximately.

I've remained stable with low markers and have full mobility...I also take Ibrance and Letrozole and have Zoladex implant monthly as I was not let at menopause at time of diagnosis.

[SKoter]

hello,

I get Zometa infusion every three month. I have not had any noticeable/severe side effects. I was told that Claritin (antihistamine) helps with side effects, particularly bone pain. The infusion itself takes 30 mins or so. The medication seems to be well tolerated and side effects are mild and transient, well, to me at least. I think that it’s worth a shot since your mum’s oncologist is recommending to do so. I also take vitamin D and calcium supplements at home. Hope your mum is doing well with enhurtu!

[Notofu4me]

I take Clodronate for bone strengthening. Bone healing has been noticed in my scans. I take 4 pills orally everyday. I have not had any side effects but it has some very specific dietary and hygiene requirements. No food an hour before or two hours after, not even toothpaste, or mouth wash. Food can reduce the drug's effectiveness. You must get your fillings, or extractions done before starting the drug, and you must maintain a high standard of dental hygiene. There is a risk of jaw necrosis if you slack off with brushing and flossing and you won't be able to get implants in your future. You have to go off the medication if you have any serious dental work such as a root canal for a short while (a month). I think the benefits of bone healing out weighs the bother of hygiene and diet. Clodronate is routinely given for osteoporosis patients.

[wendle3007]

I've had denosumab (Xgeva) injections every 4 weeks since April 2021. I also take calcium/vitamin D supplements. The only time I experience any pain is if the injection is administered too quickly. Even then the pain is only in my thighs, not very bad and goes after a few hours.

[kpgirl]

Yes! I have been receiving bisphosphonate infusions (Aredia) for 4 years now. The first 2 years, I received the infusion every 4 weeks and then - when the bones are well saturated - every 3 months. I always feel very tired after a few hours after my infusion and only felt achy after the very first one, but otherwise absolutely nothing negative. On the contrary, many of my bone metastases are now sclerotic, meaning the bone in that area has regenerated itself. You definitely want strong bones! Why is your mom worried about getting one?

[MettavivorDS]

I take Zometa infusions every 3 months, but only agreed after 6 years of MBC treatment. My fear of side effects led to the delay. I’d had no evidence of disease for 5 years and didn’t see a need until there was a recurrence in a new bone 2 years ago. My body really likes the infusions and feels stronger after getting them. I’m grateful to have been taken the bone strengthening drug, because I fell badly on ice last January. I’m still healing from the injury, but miraculously nothing was broken!

[Totheriver]

I also have zometa infusion every three months. I have bee getting them for 5 years. Only the first one had flu like symptoms for a couple of days. I take 2 extra strength Tylenol and drink extra water before my infusion.

[Nocillo]

I have had Zometa every 3 months for 9 1/2 years. The only side effect is tiredness the day after. No bone pain ever.

[Adele_Julia]

Xgeva injections are once every 3 months. I take them . I just take Claritin on the injection day no side effects. If she has bone Mets then absolutely do it

[Felicia1228]

I have a Zometa infusions every three months. The first one, I had flu like symptoms the next day and around the 6 week post infusion mark, I did have some joint pain in my hips but it passed. Since then, occasionally I may not feel like a rockstar the day after but nothing unmanageable. She should really consider adding this to her treatment.

[Flower1513]

Thanks so much! You guys are awesome at responding . I sent each one of your comments. Making her feel much better about it. ❤️

[Elle713]

I have osteoporosis and MBC and should be in xgeva shots. Bone and now liver Mets. I have also refused and put off shot although they it is standard care.

How old is your mom and what is her general health ? And her cancer status?

There’s no right answer. Just weighing risk/benefit of each.

[Figletf]

I have been on Enhertu for 13mos and I have Zometa infusions every three months with absolutely no side effects.

[ANNIE6449]

Algaecal I've added significant healthy bone with this natural supplement. I expect my next bone scan to say I no longer have osteoporosis. Unfortunately I have to wait another year before Medicare will pay for the bone scan!

[Saltandlight]

I was on Zometa every 3 months for 6.5 years while on Ibrance and Letrozole and after bone mets progression my new oncologist put me on Xgeva monthly. So far no side effects! I wish the best for your Mom 🙏🏻!

[Californiagolfbuddy]

I too get Fulvestrant along with Trusqap (a cancer drug). I thought this was a hormone blocker. I am on Xgeva as a bone strengthening med and while it doesn't seem to affect me too much one or all make me tired. Trying to get off of Xgeva due to possible jaw necrosis.