Question about bone strengthening medication

[Cazzandraus]

I was recently diagnosed with osteoporosis and now have to see an endocrinologist about bone strengthening medication. Is there any medication that doesn’t have the risk causing jaw necrosis? That is all I keep hearing about and my dentist referred me to a periodontist and said I will have my teeth checked every 3 months, is this typical? TIA

[nonna70]

Jaw necrosis is described as a rare side effect. Do you know why your dentist referred you? It sounds like he is being very careful.

[Cazzandraus in reply to nonna70]

I know it’s a rare side effect, but I have a friend who has it and it makes me nervous. My dentist said so the periodontist can measure the bones in my mouth so they can keep track of any bone loss once I start those medications. Yes she seems to be extremely cautious, because nobody I know with MBC is seeing both a dentist and periodontist every 3 to 4 months. I appreciate she is being so cautious, but my insurance won’t pay for all those visits and I don’t want to go to a dentist that frequently, we have enough to deal with with our medical appointments.

[Suite1000 in reply to Cazzandraus]

My dentist is supportive of me staying away from these drugs, He has many patients

with complications.

[Cazzandraus in reply to Suite1000]

Thanks for replying. Do you have osteoporosis as well?

[JEE123 in reply to Cazzandraus]

I agree with the post below. I do not have osteoporosis yet. Although I have a scan coming up in 6 months. Osteopenia before I started AI. It was my oncologist that wanted me to take zometa but for cancer prevention. 18 months and my current treatment is going well. Both my dentist and primary care doctor support my decision. I may change my mind if my situation changes. Another fear is that after about five years you can develop brittle bones from the medication. My doctor had no plan for that. She said "for the rest of my life " and I'm planning on more than five years. I believe these medications have a time and place but not for me right now. My oncologist admitted that she has several patients like me who aren't just going with one size fits all. I think as people are living longer more side effects are showing up.

[Pachira in reply to JEE123]

I wish I had realized the 5 year problem before I started Xgeva. At 5 years j has eye problems and developed onj. When I stopped the Xgeva I suffered a collapse in my spinal end plate and 2 compression fractures. It’s not for everyone!

[JEE123 in reply to Pachira]

wow, that's rough. As i mentioned maybe recommendations will change with people living longer. Aside from the cancer I am concerned about my bones. I take calcium and vitamin d, eat well and exercise but I'm afraid it's not enough. Both of my parents had osteoporosis and refused treatment for it. My dad also had metastatic prostate cancer. He did have some of his vertebrae collapse, but was living a full life up until a few months before his death at 91. He also chose not to treat his cancer. It is so hard to be confident in some of the choices we have to make. I think it's important to be cautious with each step and not just blindly accept the protocol.

[Cazzandraus in reply to JEE123]

Thank you for your input, much appreciated. I agree about not always accepting “standard of care” protocols. I think I might start taking calcium (I have always taken vitamin D and exercised, but had not been taking a separate calcium supplement) and see if I can get another bone scan in 6 or 7 months to see if there any changes and then make my decision about the extra medication. Like another person responded earlier, I don’t want to take another medication if at all possible. Thanks for all of your helpful responses.

[JKMS]

I was diagnosed with osteoporosis a year and a half ago in consequence of meds I take for stage four breast cancer. As I had similar concerns to you, I actually refused the meds and so far have had no issues. I’m certainly not advocating that’s the best response for everyone but I did not want to add more drugs and potential side effects to my regime!

[Cazzandraus in reply to JKMS]

Thank you, yes I completely agree, I am trying to avoid more medications in my body if at all possible! I think I am going to try taking a separate calcium supplement for 6 or 7 months and then ask for another scan to see if there are any changes and then make a decision at that point.

[JKMS in reply to Cazzandraus]

Yes I also take calcium but as the usual calcium can cause oxidative stress (which as someone who lives with cancer I need to strongly avoid), I use one derived from algae. I wish you well 🙏🏻

[Figletf]

I have a Zometa infusion every three months and I have experienced no side effects at all.

[Cazzandraus in reply to Figletf]

This is helpful and I’m glad you aren’t having any issues with them.

[fancydog]

Sounds like your Dentist is being extra careful, or you already have some dental issues. I tolerated Xgeva and Zometa with no problems.

[ANNIE6449]

AlgaeCal

Look it up online. It is not a drug so you’ll have to pay out of pocket and it’s very expensive. But they are so sure it works they guarantee a better bone scan after at least 6 months or ALL your money will be refunded.

I’ve been on it about one year and have gained 1 lb of new bone so far and my blood tests show significantly less bone loss than years past.

As I understand it, any of the Rx medications keep the old dead bone around rather than growing new healthy bone so they make the DEXA scans look good but do not lessen your chances of fracture and may lower the QUALITY of your bones and could cause one. AlgaeCal grows new healthy bone.

[Oberammergaux2 in reply to ANNIE6449]

Thank you so much for this information! I have osteoporosis from MBC meds but I had bone transplants to my jaw in my 30s because of bone loss even then (way before MBC). I have lost teeth since starting chemo meds and my dentist is adamant that I not take osteoporosis meds while my oncologists are pushing for me going on them…..I keep refusing to take them. I’ll look into the AlgaeCal!

[ANNIE6449 in reply to Oberammergaux2]

I just had a tooth extracted and a bone graft put in last week. The prosthodontist asked me about bisphosphonates before he even worked on me because he knew the dangers. He looked at the algecal website and thought it looked really good. I can hardly wait to see what my next dexa scan looks like! I hope the algaecal helps you as well. Good luck in your journey!

[Oberammergaux2 in reply to ANNIE6449]

Thank you! Just ordered some from Amazon. Please keep me posted on how you’re doing!

[Cazzandraus in reply to ANNIE6449]

Thank you for this! My friend swears by this product and sent me her scan results after 1 year and she reversed her osteoporosis. I ordered a garden of life brand yesterday called Raw Calcium with the same ingredients. I hope it helps!!

[Lulis in reply to ANNIE6449]

Thank you for the information. I am going to give this a try. My oncologist said I have mild osteopenia and should take calcium and Vit D. However she did acknowledge that calcium sometimes causes other issues, including negatively affecting the kidneys.

My oncologist and dentist think I should give Zometa a try. However, I have always had dental issues (root canals, bone graft to put in implant, gum issues). Prior to diagnosis, I was already seeing the periodontist every 3 months. Since diagnosis, I have had two teeth extracted and a root canal (no problems with these teeth prior). The endodontist is recommending I get another tooth extracted because he foresees it failing in the next year or so. I do think the cancer meds are having an adverse effect on my already imperfect dental health (despite generally good dental care). I feel like I am not the best candidate for Zometa. Has anyone waited a while before starting?

[ANNIE6449 in reply to Lulis]

I have repeatedly refused Zometa because I have similar dental issues as you. I've had excellent dental care all my life but unfortunately inherited weak teeth from my mother. ONJ is not nearly as "rare" as oncologists would like you to think. If YOU get it than the odds are 100% - and this is a horrific side effect that causes life-altering changes to your appearance and lifestyle. My prosthodontist told me he has worked with such patients and confirmed that this is not something you want to "play around" with. He has had patients on whom he has had to restore facial features after jaw necrosis and/or removal and he said it's very challenging for him as well as painful and scary for the patient.

When I was first diagnosed with breast cancer the tests I took said I had over 90% chance of NO recurrence or metastasis, yet here I am! I've lost twice at beating the "odds" and I'm not willing to gamble again. My current meds - capecitabine - have rendered my cancer "inactive" with minimal side effects for almost a year now and the AlgaeCal seems to have reversed my osteoporisis. I've also been told there are still so many alternatives, with new ones being added all the time, I'm not taking any chances with something that might cause such horrible side effects as ONJ!!

I also use a LOT of adjunctive therapies that boost my immune system and ability to fight cancer. (It is my GP's specialty working with cancer patients.) I'm approaching 71 and still cycle at least 50-75 miles per week (I mean CYCLE not drive an ebike scooter), play competitive tennis and pickleball at least 3x/week, do regular resistance training, hike, & RV by myself for months at a time. The day I can no longer do these things is the day I give in to the cancer (if it's still there) and I"ll be ready to die. I expect that won't happen for at least another 25 years!!! I've been told that my positive attitude is an important part of my survival and I truly believe it is.

Keep fighting!!

[Lulis in reply to ANNIE6449]

Thank you for your response. It's encouraging to hear from someone else with similar issues. I had a couple specialist tell me that my dental issues are most likely hereditary. My dad's side of the family have weak teeth too. I've asked my dentist, perio and endo so many times if they really think Zometa is a good idea for my particular situation. They all respond if my oncologist suggests it, then I should do it. My gut is telling me otherwise. Does a prosthodontist have more knowledge/expertise?

I was diagnosed de novo 2.5 years ago and so far I have not had major side effects. Some days I experience more fatigue than others. I have learned to listen to my body and rest when I need to. With a high schooler and a pre-teen, life is busy. I do need to exercise more. Thank you for sharing your exercise regimen. That's inspirational! Now to put into practice!!!

[ANNIE6449]

could cause ONJ, not one (crazy spell check!)

[RLN-overcomer]

Greetings 😊 Sister/Warrior sorry for the late response. Look into a natural supplement called Strontium. You can ask an Integrative Dr. for advice on this supplement, and other natural supplements to strengthen your bones. There are Integrative Doctors at the natural supplement stores " Invite Health" who will give you advice on Strontium, and similar supplements to combat bone loss. You don't have to purchase their products, but they will ask if you would like to purchase anything🙂. Also check the Annie Appleseed Project for natural modalities. I hope/pray you find something to help combat your bone loss 😇🙏✝️👍