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Questions about Zometa and consult with another MO

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palake
palake Member Posts: 11
edited August 2022 in Bone Health and Bone Loss

Hi everyone,

I am writing this on behalf of my mom and need your wisdom and experience. This is about whether we need a second opinion from another MO and choice of Zometa.


First of all, we are a little bit unhappy about our MO. She is the director of a major hospital, and we can understand that she must be very busy.

In March 2022, my mom had bilateral mastectomy and was scheduled to meet her in May. The surgeon ordered Oncotype for us.

Two days before our appointment with the MO, their nurse called and converted our appointment to a phone call.

On the appointment day, her nurse called on behalf of her, basically told us that the oncotype score is low and we do not need chemo, just need to take Aromatase for five years. We asked for a copy of the oncotype test, the nurse promised us to send, never did after the phone call.

I had to contact Oncotype directly and get a copy. Her score was a 2. Very low so we are ok with no chemo option. Then I saw the date of the report, that was one day before they converted our appointment to phone calls.

In July 2022, the nurse called again and told us we may need to start Zometa treatment in October 2022 (once every 6 months for 3 years), and asked us to get a dental clearance. My mom's dental situation is complicated, and the dentist says that it is very possible that she may need invasive dental work in the near future even though we try to fix most of the problems before October 2022.

I did some research to see if we have any other options of bone strengthener. Some posts in this forum mentioned Xgeva and state that it may stay in the system for a shorter period of time compared to Zometa. I am aware that I am not a medical expert so I wrote an email last month asking the MO if we have any other choices of medication, for sure I did not demand anything it was just a short inquiry email. To date, I wrote two follow up emails and called twice. There is no response from the MO. The nurse told us that she does not have any information re my inquiry.

Our only concern is that if my mom needs invasive dental work after we start, it is better to adopt a medication that may give us more flexibility of doing the dental work. To date, we have not met the MO in person even once. Each phone call with the nurse lasts 5 minutes. We have the feeling that because of my mom's low oncotype score, they do not pay enough attention to my mom's file.

So to summarize,

Our questions are:

1.If you have any experience re bone strengthener treatment choice, please share with us;

2.Do you think we should consult with another MO for second opinion since our current MO is very busy and not being very responsive?

Any insights will be greatly appreciated. Thanks again.

Comments

  • olma61
    olma61 Member Posts: 1,020
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    My doctor chose Xgeva for me and knowing what I know now I am glad she did. Xgeva is the same drug as Prolia but a higher dose, as it used for people with cancer that has spread to the bones. Perhaps prolia is a better choice for your mom, since it sounds like she is early stage and the purpose of the bone strengthening drug is simply to prevent bone loss caused by Anastrozole

    Maybe see what her primary care physician says and also ask the oncologist if the bone strengthening drugs can just be delayed until all the dental work is complete. Assuming your mom does not already have osteoporosis. By all means seek a second opinion from an oncologist as well

  • palake
    palake Member Posts: 11
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    Thank you so much for sharing this Olma, never know about Prolia before. Will discuss this option with our old or new MO about this!

  • maggie15
    maggie15 Member Posts: 924
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    Palake, if dental problems are a concern for your Mom another option is aldendronate (Fosamax.) I have osteoporosis which predated my bc diagnosis by 10 years and have been taking it in periods of 2 years on and 2 years off. It requires taking a pill once a week, but invasive dental work can be done after discontinuing it for 2 rather than 6 months. I have had to endure dental pain twice so far, but 2 months with pain meds was doable and I have not had problems with osteonecrosis. My endocrinologist told me that alendronate does not increase bone mass density as well as Prolia or Zometa, but it keeps the BMD stable when taking AIs. According to my MO Xgeva is used only for bone mets. Has your Mom ever had a DEXA scan to find out the current state of her bone density? Her PCP could order this.

    My sister whose osteoporosis is worse than mine (4 hip replacements, the first at 39 yo, and 2 knee replacements) used Boniva and Prolia but had some bad side effects after a while. Of course, she has been taking these meds for way longer than the 5 years AIs are generally prescribed.

    I hope you get some answers soon.

  • palake
    palake Member Posts: 11
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    Thank you Maggie. My mom did a bone density test. The density is still in the normal range but already decreased compared to her last year's stats before taking AIs.

    Thanks for sharing aldendronate with us. Will discuss with our doctor.

  • rah2464
    rah2464 Member Posts: 1,192
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    Palake my endocrinologist and dental surgeon stipulate that it is primarily a tooth extraction or implant that could trigger jawbone issues. Fillings, crowns, root canals are not considered as risky. But do prioritize her dental work, then start the meds. In the meantime, make sure she is consuming 1200mg of Calcium daily along with vitamin D and a small amount of K daily. You can easily get to this number with two Viactive chews daily. Also if she can walking daily or weight bearing exercise will help keep bones more stable.

  • specialk
    specialk Member Posts: 9,226
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    I was osteopenic prior to breast cancer due to a total hysterectomy/oopherectomy for numerous uterine fibroids and an ovarian mass, but my density was stable without meds over that nine year period. I had a DEXA done the same day as the imaging that led to my breast cancer diagnosis so I had a very good pre-treatment baseline. About six months into letrozole my DEXA showed a marked decrease in density so my MO prescribed Prolia. I was on it for more than 6 years and was advised to have any routine (not dealing with jaw bone, extraction, or implant) dental work done half-way through the six-month interval between injections. I was a very good responder to Prolia and regained normal density. I also took calcium and Vitamin D during that time period. I stopped Prolia several years ago and have not lost density to any great degree. I have since needed an implant due to bone loss from an old crown (and I mean old...from high school) which was not connected in any way to the Prolia use, and I had no issues with that process.

  • gb2115
    gb2115 Member Posts: 553
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    Just to clarify, this MO is responsible for your mom's oncological care, but hasn't met her yet? Since March? If it were me, and the doctor (who hadn't even met me yet) had no time to talk with me but has the nurse call instead, I would probably be looking for another doctor.

  • palake
    palake Member Posts: 11
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    Hi gb2115, yes this MO is responsible for my mom's post-surgery care for the next 3-5 years. Their nurse informed us that this doctor will not reply to any of our emails since she is getting too many emails from different patients. We are discussing with our family doctor now to seek a second opinion and referral. We never met her in person since March. She gave us a three-minute phone call in April stating that she has reviewed everything with the nurse so we can just talk to the nurse instead. We are happy that my moms oncotype score is low but we just feel that we are being treated like this because of that...

  • maggie15
    maggie15 Member Posts: 924
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    Palake, I don't know your mom's age, but being over 70 I occasionally encounter doctors who have a subconscious view that "geriatric" (grrr, but it is a medical classification) means a lesser standard of care. I still work full time (teach high school math) and come from a family of nonagenarians and centenarians, so I won't accept that. My MO is a busy research scientist but he gives me the same attention that a 35 year old with young children would get, takes account of all aspects of my health when recommending treatment, and respects my wishes. Ask your family doctor to find someone who enjoys taking care of older cancer patients.

  • XfitMama2
    XfitMama2 Member Posts: 18
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    100% get a new MO.

    You should feel taken care of and attended to during this process. I’m sorry you and your mom haven’t had that!

    It sounds like you take amazing care of your mother, wishing you the best luck

  • palake
    palake Member Posts: 11
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    Thanks for everyone's input and sharing. My mom is almost 59 year old and your replies give us confidence and determination to seek better care.