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Secondary breast cancer in bones, medication advise required please

Curbs profile image
22 Replies

Ive got secondary breast cancer in my bones and on letroxole. My Onc wants to put me on Denosumab but Im nervous about it, does anyone else have similar diagnosis and meds that can advise me plse?

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Curbs profile image
Curbs
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22 Replies
kduck profile image
kduck

I’m on the same treatment including lupron. The denosumab is a bone strengthening treatment, it has helped to strengthen my bones and prevent fracture and breaks. Where are your Mets located?

Curbs profile image
Curbs in reply to kduck

Hi my mets is is in my sternum for which I have had radiotherapy and will have a scan every three months as they need to check if it spreads to the rest of my bones, are you ok on the treatment I really appreciate you answering me x

kduck profile image
kduck in reply to Curbs

Yes, just aches and pains! I have scans also every 3 months. I truly believe the bone strengthening treatments help a lot, it protects your bones. I’m glad to help

Jhnard profile image
Jhnard

I was placed on Denosumab (prolia) after being on anastrozole for six years which caused osteoporosis. Prolia is suppose to aid bones from BC metastasis. It is suppose to strengthen them by basically plugging the osteoporotic holes preventing a place for cancer to grow. I went off of the Prolia after two shots due to side effects and the things I read about it. Plus you can only stay on it for a period of time and then must go on other drugs for the rest of your life because of rebound fractures.How did you know the cancer had metastasized into your bones what were your symptoms? Always my concern since I went off Prolia.

It is never an easy decision but at least we have options to consider.

Best best of luck to you!

kduck profile image
kduck in reply to Jhnard

What where your side effects on prolia? I was suppose to switch to prolia, currently I’m on xgeve.

Jhnard profile image
Jhnard in reply to kduck

Migraine headaches,itching and achy joints and my thumb unable to hold jar to open. 90% of side effects gone.

Curbs profile image
Curbs in reply to Jhnard

Intense itching, then pain then a lump appeared, took my a year to persuade my breast consultant that something was wrong.

Jhnard profile image
Jhnard in reply to Curbs

Were you diagnosed with breast cancer and bone metastasis at same time. I was diagnosed in 2014 and immediately placed on anastrozole/ aromatase inhibitor. Which caused osteoporosis triggering need for Prolia. Went off to go on Evista which is a mild drug that treats breast cancer and osteoporosis.

Curbs profile image
Curbs in reply to Jhnard

No I was diagnosed with HER2 positive grade 3 breast cancer in 2012 and had a mastectomy on my left side and reconstruction. No cancer in my lymph nodes. Had Herceptine for a year and tamoxifen for 8 years. Diagnosed Aug 2020 with secondary breast cancer in my sternum.

Mary115 profile image
Mary115 in reply to Jhnard

My onc wants me to take Bisphosphonates infusions.. I am concerned about side effects and wonder if prolio is better or xgeve. I am confused

Jhnard profile image
Jhnard in reply to Mary115

Is your onc placing you on meds as a result of a Dexa scan?

Denosumab is the generic name for the trade name drugs Prolia or Xgeva. In some cases, health care professionals may use the trade names Prolia or Xgeva when referring to the generic drug name denosumab.

Mary115 profile image
Mary115 in reply to Jhnard

Dexa scan was rather good but wanting to start biosphanate infusions because i am taking anastrozole.. Insurance does not cover another scan for a year. Found small lump in lung.. CAT scan shows no growth. Radiologist and Onc think it is cancerous (irregular form) and will keep up with CAT scans .

Jhnard profile image
Jhnard in reply to Mary115

I am not a Dr. but I don’t think those drugs help unless you are diagnosed with osteoporosis. So why would anyone subject themselves to side effects of those meds without a diagnosis to take them-just saying

Mary115 profile image
Mary115 in reply to Jhnard

Thanks Jhnard ; You may not be a Dr. but you speak to my sense of things too.

Jhnard profile image
Jhnard in reply to Mary115

Sometimes we just have to be our own advocate! Good luck and best wishes with your journey!

Jg1960 profile image
Jg1960 in reply to Mary115

Hi Mary, My Oncologist wants me to also go on Bisphosphonates infusions - Zometa, after I finish chemo. She said it's an infusion every 6 months for 2 years. The reason is because it has been shown to reduce bone mets by 2% in post menopausal breast cancer patients, the bone strengthening aspect is secondary. The problem I am having is that my research shows there is a 1 to 3% chance of getting Osteonecrosis (the jaw bone dying). There is no real treatment for osteonecrosis if it happens. In my mind the 2% benefit is canceled by the 1 to 3% chance of getting osteonecrosis. Were you given any information on this?

Mary115 profile image
Mary115 in reply to Jg1960

JG Thank you so much for responding. Your explanation of why oncologists use biosphosponate infusions for estrogen positive cancers is helpful.

I am not going to take the infusions because I have dental situations that can erupt at any time, and complicate matters. rdhmag.com/career-professio...

Two to three percent lessening of the cancer returning is not enough for me to risk the perceived benefits.. But again I am 74 years old with a complicated medical history and am proceeding as cautiously as I can. My end goal is less pain and discomfort and positive quality of life rather than lengthening life.. though lengthening would be welcome too.

Once again. Thank you. so much.

Jg1960 profile image
Jg1960 in reply to Mary115

Thanks for the article, most interesting. I agree with you - quality of life is more important to me than quantity, but I am still planning to live a long life! All the best.

Mary115 profile image
Mary115 in reply to Jg1960

Me too... Live Long and well...

afraidofdrugs profile image
afraidofdrugs

First off I'm so sorry to hear about your diagnosis. I've been researching a LOT, and discovered The Moss Report. It's a report on each particular kind of cancer by medical writer Ralph Moss. I saw a documentary (the truth about cancer-highly recommend) and when they asked a variety of Dr.'s what they would do if they were diagnosed with cancer, one person said "I would first get the Moss Report." So of course that peaked my interest. It's a big report on every scientifically proven method for healing each cancer, with pros and cons, including complimentary/alternative methods. Unbiased info is hard to get from our doctors. I don't see bone cancer as a report he has available, but maybe a consult with him would help you reach an informed decision.

Paradise43 profile image
Paradise43

I’m wondering after completing chemo and radiation on letrozole if anyone was diagnosed with MGUS a precursor to bone/blood cancer multiple myeloma.

Corrina97 profile image
Corrina97

Hi I have breast cancer mets in my bones I have been put on Densumab. They told me i needed to go on it as bone mets cause holes in my bones and which would cause pain and fractures. I didn't really have time to think about it but understand why you are wandering whether or not you should take it. I really don't understand properly and wander why they don't assess the condition of your bones before putting you on it especially if bone mets are stable. Cant make sense of it myself.i suppose l just went along with it in the hope they knew what was best for me. Still worry though .more worried lately as have sore hips but they say thats more likely to be caused by the fulverstrant im taking.hope you come to a conclusion you feel comfortable with x

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