Anastrozole and Zometa
my onc wants me to do radiation plus Anastrozole and Zometa infusions every 6 months for 5 years. I am stage1A, no spread, no lymph nodes involved and my oNCO score was a 1. I have poor dental health and have to get clearance from dentist before I can start Zometa. I’m scared to death of the possibility of jaw issues due to the Zometa and thinking dentist will suggest pulling remaining g teeth and doing full dentures, but that will be yet another cost..likely over $5000. I’m debating not doing the Anastrozole and just doing the radiation. Anyone have any thoughts on this?
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Hi @thefight5924 , At stage 1A with an Onco score of 1 I would think that the benefit of anastrazole would be very small. You could ask your onc what the chance of recurrence with anastrazole is vs. the chance of occurance without to help with your decision. The treatment being recommended is standard of care but with poor dental health which could be made worse by Zometa it might not be worth it.
You still need good bone density to get and retain the $5000 dentures since they involve implants. My jawbone is so bad I can't have implants; right now I have a mouthful of bridges and crowns. If my teeth ever have to be pulled my only option is the old fashioned dentures that you take out and soak every night. Your quality of life can be greatly affected by your ability to chew and the facial structure teeth provide. Good luck with your decision.
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I am also taking anastrozole daily with zometa every 6 months and I am having terrible trouble with my teeth. During my initial chemo of paclitaxel, herceptin and perjeta, my teeth loosened and shifted. I had braces as a child but now I need them again. However, that is not in the budget. Before my first zometa infusion last December, I went to the dentist for clearance and he did a root canal and crown (my first). Since then I have had to have another root canal, two crowns, and an old filling removed and re-done. I just had my second zometa infusion last week and will be seeing the dentist this week because I am in terrible pain where the second root canal/two crowns were done. I can't tell which tooth it's coming from.
In the previous 20 years the only dental work I needed was a small filling. I can't have teeth pulled because of the zometa, and implants are not in my budget at all. I have spent $5000 on my teeth since my diagnosis. They look and feel terrible. It's really upsetting.
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@maggie15's suggestion is on target re: asking your MO (medical oncologist) for the risk vs benefit of taking the Anastrozole and Zometa to inform your decision. Like both @maggiehopley and @maggie15 said, the concerns you bring up are real concerns, and $5,000 is no small sum—which doesn't even begin to incorporate the impact on quality of life should you encounter dental issues considering your specific situation.
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@thefight5924 We're just checking in to see how you're doing since you first posted. Some helpful thoughts here for you — we hope you'll check back in soon and let us know what you decide and how else we can support you!
—The Mods
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did not get dental clearance..will have remaining teeth pulled next week and then full dentures. Bone density shows osteoporosis so I don’t understand why oncologist thinks anestrezole and zometa will be good for me. I’d like to have some quality of life thru all this. Have a second opinion on July 29. Radiation consult on July 8. I feel like my oncologist is just pushing the protocol they do for everyone without listening to my concerns and it makes me so angry. I can’t change the fact that I got cancer, but I can try to understand what will work for me.
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@thefight5924, we're so sorry to hear about the dentures and that you're not feeling heard. But, it's great you're getting a second opinion. Here are some more info links that you might find helpful:
We hope this helps!
—The Mods
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@thefight5924 , I’m sorry you did not get dental clearance. The decision whether to take anastrazole and zometa is up to you even though your MO recommends it. Tamoxifen which is given to premenopausal women is another option for those who are post menopausal. It does not have the adverse effects on bone density although it has its own SEs. It is slightly less effective than AIs but almost as good. You can also make the decision to decline both as I did. I had several reasons for doing this, osteoporosis being one of them. My MO still recommended that I take them but told me my reasons were valid and he was satisfied I was making an informed decision. I’m taking a statistical risk that some people would be uncomfortable with but some who take HT still have a recurrence and many who decline it do not. Statistics apply to a large sample of people but can’t predict what will happen to an individual. I’m glad you are getting a second opinion before making your decision. Hold off on your dental work until then.
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Zometa will help with your current condition of osteoporosis however, since the teeth are a problem, it is time to get a second opinion before starting the treatments.
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thank you. My oncologists nurse called to ask if I’d seen the results of my bone density and I said yes and she said osteoporosis. I said yes, I saw that. Yet still not a word from the oncologist himself as to whether he thinks that changes my treatment plan. I guess not since he didn’t bother to comment anywhere.
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I went to the dentist this week and they did a Cone Beam CT scan of my jaw to check for ONJ and bone health. It took about a minute. You are standing up, you place your head in the machine (it's open so no claustrophobia), and it spins around your head. It only takes a minute- literally. I had no idea this existed. Turns out my bones are fine but I have a ligament problem, which is not AI or Zometa related.
If you are on an AI or bisphosphonate and are worried about ONJ, ask your dentist if they can do this test.
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I had surgery last month for stage 1 breast cancer, no lymph nodes involved. No chemo, no radiation. Age 70. I absolutely REFUSE to take Arimidex or any aromatase inhibitor. I had a horrible experience with Fosemax 10 years ago and will never take any osteoporosis drug again, whether it is oral or by injection. It is your body, your choice and the MO cannot force you to take drugs. I have had several root canals and I'm at high risk for extractions and dental implants. Another reason I will not take bone drugs. My risk for cancer recurrence is low, and I will not subject myself to the torture of AIs. It's a quality of life issue for me. The MOs want to put you on too many drugs to combat the side effects of the AIs and those drugs all have side effects. No way. Good luck with your decision. Do not let your doctor pressure you to do what you feel is not in your best interest.
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I belong to an osteoporosis support group and have learned a lot about DEXA scans and scores. It's been an eye opener. They compare your bone density to that of a 30 year old woman. So basically anyone of a certain age, especially post menopausal women, have osteoporosis. The drug companies are cashing in on this. I had a horrible experience with Fosemax, unbearable pain, and quit after 1.5 years. I will never take another bisphosphnate again. I've learned that osteoporosis is not a disease. Bone loss is a natural part of aging. But you can still have good bone quality. I eat a very healthy diet, exercise regularly and do yoga for flexibility. Bone drugs can have very serious side effects and are not an option for me. I no longer get DEXA scans since I'm not going to take the drugs. I am glad you are going to get a second opinion. It sounds like your doctor is not a good fit.
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I took an AI for 5 years. Just finished in March. My last Dexa scan was a year ago. I realize there is a T score that compares my result to a 30yr old. That result is the standard deviation between myself (age 58 at test time) and a 30 yr old. There is also a Z score that compares to others in my age group.
I scored normal for both categories. I’m a little confused by the previous comment from saleen19 above, that any one of a certain age will have osteoporosis. Is that because of the comparison to a 30 yr old?
My T score is 1.39 (hip) and 1.30 (femoral neck). My Z scores are 1.89 and 2.21.
Can anyone chime in and help me understand if I’m looking at this correctly?0 -
According to research from Johns Hopkins the prevalence of osteoporosis in women by age group is 50-59 yrs 14%, 60-69 yrs 22%, 70-79 yrs 39%, and 80 yrs or older 70%.
There are many factors which increase the risk including family history and the use of meds such as AIs, corticosteroids, heparin and thyroid hormone. That is why DEXA scans are done and bisphosphonates are often prescribed for women taking AIs. The comparison to "30 year old bone" is just the standard chosen for normal bone density before aging takes place. Some people have no bone issues while taking AIs and not everyone who takes bisphosphonates has problems. A healthy active lifestyle and other meds like hydrochlorothiazide (which I take for high bp) and tamoxifen can help maintain or improve bone density
I take steroids and sometimes thyroid hormone so adding to the osteoporosis burden is one reason I declined AIs. I have taken several 2 year courses of fosamax with breaks in between without problems to keep my bones pretty much in the osteopenia stage. I use that instead of the IVs and injections since I have terrible jawbones and the pill clears your system more quickly than the other modalities for dental work. My family is in a long term osteoporosis study (over 30 joint replacements and numerous fractures among the 6 of us) so I have family history going against me. Everybody's situation and reactions to medications is different so it's something that has to be considered on an individual basis.
@dimples90 , Your T and Z scores are good. You can check with your doctor but you seem to be in the group with normal bone density even after taking AIs. I agreed that @thefight5924 should get a second opinion not because I doubted the validity of her osteoporosis diagnosis but because I'm not sure that taking an AI is imperative for someone with an oncotype score of 1 especially if they already have osteoporosis.
It's useful to hear about others' experiences and reactions to treatment but in the end everyone needs to do what is best for them after considering their doctors' advice as well. Happy July 4th!
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maggie15,
Thanks so much for providing the link! I don’t post much but always enjoy reading your thorough responses to questions from members. I was secretly hoping you would answer. Appreciate your help.
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hello all, i'm grateful to have found this discussion. @thefight5924 , i feel for you and am interested in knowing how your journey is progressing. i'm terrified of and dragging my feet on starting zometa and need dental work before starting: i'm looking for anyone in the Los Angeles area that has or knows of a dentist that has experience with our issues. i asked my onco for a referral, no luck. UCLA's dental school treats cancer patients but has terrible reviews. @saleen19 , i'm with you. i said no to AI's for 5 years and even though it's metastasized, i have no regrets. at the time, i was in no place mentally or physically to endure severe side effects. man were the doctors pissed off at me - even with my low oncotype dx score, i was suprised by how personally they took it. couldn't help but think of commissions and kickbacks LOL
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finished 16 rad treatments Aug 20 and that afternoon had more dental surgery to shave down boney areas from the extractions, so my mouth healing started all over again! On week out and still some very minor soreness and had dentures relined and they are better. I did change oncologists and this one also recommended the pills, while also telling me my osteoporosis needs to be treated but to see my PCP for that (?!) saw her and we decided on Fosomax but now I’ve researched and that also can cause jaw issues . She said it’s very rare, but with my cancer dx and my teeth issues do I want to take that risk? I’m not exactly batting 1000 here! Was supposed to see after I finished rad treatment and had appt. They called to say she has an emergency appt that day and need to reschedule. So she gives me the same day but then says instead of seeing her I’ll see the new NP. There just isn’t any sense of continuity of care if I keep seeing diff drs! Either way I am NOT taking the pills. Jury is still out on the Fosomax. Taking good doses of Vit. D and calcium, watching my diet, etc.
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Your oncologist and PCP are the wrong people to ask about osteonecrosis of the jaw. Ask your dentist. Both my PCP and onc said it was rare, but boy did my dentist disagree! She says she sees a lot of it and the injectables are the worst. And once you have ONJ, there is no reversing it.
As for dental work, you never know when you might need it. I take very good care of my teeth, yet I have a root canal that is possibly failing and might need an extraction. If you're on Prolia, you are out of luck. If you stop it, you get rebound fractures. So people who quit it need to relay onto a bisphosphonate. But those cause ONJ as well.
I've refused both aromatase inhibitors and all osteoporosis drugs. I eat healthy, exercise daily and will live as nature intended.
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Hi @thefight5924, I'm glad the dentures are more comfortable. MOs only deal with osteoporosis if you are taking AIs they prescribe so I am treated by my endocrinologist (also have thyroid issues.) She recommends fosamax for cancer patients since the risk of ONJ is very small, .001% - .01%, and it clears your system after stopping it for a month. She keeps me in the osteopenia range as a compromise so that I can be off bisphosphinates for longer. Zometa has a 1% chance of ONJ for the first year and increases by 1% each year you are on it. Prolia has a risk of 1% to 15% for cancer patients with the higher risk for longer use. Fosamax is old school but I haven't had any problems when I have been on it.
@edge_of_no_return, It is very difficult to find anyone who will deal with cancer related jaw issues. I ended up with an oral surgeon who actually diagnosed my bc because of mandible osteomyelitis. He said he is one of the few oral surgeons around who does more than extractions and implants, a nice easy living. He believes the point of a medical degree on top of a DMD is to help people with injuries and diseases; I was lucky to find him. Dental schools are one of the few places that offer training in this area so in spite of the bad reviews UCLA might be your best bet. Is there another dental school with better reviews that you could travel to like USC or another UC branch? I live in a rural area and have to travel over 100 miles for anything that is not a primary care type medical issue. I hope you can find somebody helpful.
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