Breast cancer patient also with osteoporosis: AI, Prolia and Reclast

Posted by bunnymoon @bunnymoon, Apr 4 10:07pm

Im new to this site. Please forgive if this topic addressed previously. I am to start an aromatase inhibitor (letrozole) but I have osteoporosis. Plan is for me to start every six months Prolia shots. Of note I’m 58, postmeno, was on HRT for menopause symptoms and osteoporosis. The HRT didn’t help my bone density.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@heyjude44

I have been taking once a month Boniva for osteoporosis for a few years. Post chemo and radiation, and being on Letrozole , oncologist did not mention changing that for another bone med. I have not seen anyone else mentioning that particular medication. Has anyone else taken this post cancer treatment?

Jump to this post

Boniva is a bisphosphonate like Reclast and Fosamax so that might be why.

REPLY

I took the second shot of Prolia- and that is the last one. The nerve pain got worse after the second. Hardly could walk for four month- whereby walking is the best thing I could do. If I knew what I know now, I would not have started the injections. Asked your oncologist for something else or prep yourself of some side effects: diarrhea, muscle pain, nerve pain, insomnia that comes and goes. Maybe you are one of the lucky ones that do not have severe issues. It is a gamble.

REPLY
@bunnymoon

Hello. I’ve posted my question (concern) under osteoporosis site. Realizing might be helpful to post to Breast Cancer site. Please forgive if this topic addressed previously.
I am 58 with early stage breast cancer. I have osteoporosis also. I am to start an aromatase inhibitor (letrozole). Plan is for me to start every six months Prolia shots. For 2-3 years. Then Reclast.
I’m dreading all these medications, more fearful of osteoporisis, wanting to stay vibrant and active for my young children.
Was instructed by oncologist to take calcium supplements a “few days before and after” Prolia shot.
Am I over-fearing?

Jump to this post

Diagnosed in 2023 at age 60, with stage 1a breast cancer, had preexisting osteoporosis and high cholesterol … unfortunately AI’s used to treat cancer tend to worsen both conditions.

AI’s are the default treatment for post menopausal women. Tamoxifen may be less effective at reducing recurrence, but it can actually help prevent bone loss and it doesn’t affect cholesterol (but it can cause blood clots and uterine cancer among other side effects).
Tam isn’t typically offered to post menopausal women, I had to specifically ask about it.
I asked my oncologist to walk me through the benefits/side effects/risk of recurrence of each med, based specifically on me … my tumor characteristics, Oncotype, family history, osteoporosis, cholesterol, etc.
My recurrence risk was very low to start with, so in conjunction with my oncologist, I was able to make an informed decision to try Tam.

Like you, I don’t like all of the medications, and I try to make informed choices, knowing that for me, quality of life is my goal.

I had a Reclast infusion in September, another this coming September, then another DEXA and will decide what future treatments are warranted.

I encourage everyone to research and advocate for themselves - ask questions - if your provider gets defensive or dismissive, it might be a sign that they are not a good match for you.

REPLY
@bunnymoon

Hello. I’ve posted my question (concern) under osteoporosis site. Realizing might be helpful to post to Breast Cancer site. Please forgive if this topic addressed previously.
I am 58 with early stage breast cancer. I have osteoporosis also. I am to start an aromatase inhibitor (letrozole). Plan is for me to start every six months Prolia shots. For 2-3 years. Then Reclast.
I’m dreading all these medications, more fearful of osteoporisis, wanting to stay vibrant and active for my young children.
Was instructed by oncologist to take calcium supplements a “few days before and after” Prolia shot.
Am I over-fearing?

Jump to this post

PS … keep in mind that you have time to research and make decisions - this is not an emergency situation.
I just wanted to get everything done as quickly as possible & get on with my life. Fortunately I have a good friend who helped me slow down & find the best treatment for me, which actually made things much easier in the long run!

REPLY
@bunnymoon

Hello. I’ve posted my question (concern) under osteoporosis site. Realizing might be helpful to post to Breast Cancer site. Please forgive if this topic addressed previously.
I am 58 with early stage breast cancer. I have osteoporosis also. I am to start an aromatase inhibitor (letrozole). Plan is for me to start every six months Prolia shots. For 2-3 years. Then Reclast.
I’m dreading all these medications, more fearful of osteoporisis, wanting to stay vibrant and active for my young children.
Was instructed by oncologist to take calcium supplements a “few days before and after” Prolia shot.
Am I over-fearing?

Jump to this post

@bunnymoon I am going to add a different thought from the other answers. Instead of saying I would not do this drug or that drug and my reasons. I would ask my doctor what the reasoning is for choosing the path prescribed. I have this most amazing Mayo doctor that prescribed exactly the same thing for me. I asked, also concerned about it.
I had finished my AI and had an accident which resulted in many fractures. I wish to keep my healthy active lifestyle and I own and ride horses. My doctor explained his reasons for the choices and I agreed.
I just had a dexa scan and my scores improved from the previous scores, I feel like my doctor has my best interests in mind and he is very thoughtful about his recommendations.
Do you feel like you trust your doctor to have your best interest in mind? Have you asked for the reasoning behind these choices?

REPLY
@bunnymoon

Hello. I’ve posted my question (concern) under osteoporosis site. Realizing might be helpful to post to Breast Cancer site. Please forgive if this topic addressed previously.
I am 58 with early stage breast cancer. I have osteoporosis also. I am to start an aromatase inhibitor (letrozole). Plan is for me to start every six months Prolia shots. For 2-3 years. Then Reclast.
I’m dreading all these medications, more fearful of osteoporisis, wanting to stay vibrant and active for my young children.
Was instructed by oncologist to take calcium supplements a “few days before and after” Prolia shot.
Am I over-fearing?

Jump to this post

Thank you so much. I do have a lot of trust in my oncologist. I’ve also been gathering more data specifically ASCO guidelines on this very issue (2019) and am seeing he is adhering to strong data. Bottom line is I’m just afraid and angry at my health issues. Like you, and like all of us on this string, I just want my life to be active and free of pains and mood issues and of course fractures and cancer. 🩵

REPLY
@bunnymoon

Hello. I’ve posted my question (concern) under osteoporosis site. Realizing might be helpful to post to Breast Cancer site. Please forgive if this topic addressed previously.
I am 58 with early stage breast cancer. I have osteoporosis also. I am to start an aromatase inhibitor (letrozole). Plan is for me to start every six months Prolia shots. For 2-3 years. Then Reclast.
I’m dreading all these medications, more fearful of osteoporisis, wanting to stay vibrant and active for my young children.
Was instructed by oncologist to take calcium supplements a “few days before and after” Prolia shot.
Am I over-fearing?

Jump to this post

Hi @bunnymoon, I merged your 2 discussions into one discussion that appears in both the Breast Cancer and the Osteoporosis group. 🙂

REPLY
@1ek

Diagnosed in 2023 at age 60, with stage 1a breast cancer, had preexisting osteoporosis and high cholesterol … unfortunately AI’s used to treat cancer tend to worsen both conditions.

AI’s are the default treatment for post menopausal women. Tamoxifen may be less effective at reducing recurrence, but it can actually help prevent bone loss and it doesn’t affect cholesterol (but it can cause blood clots and uterine cancer among other side effects).
Tam isn’t typically offered to post menopausal women, I had to specifically ask about it.
I asked my oncologist to walk me through the benefits/side effects/risk of recurrence of each med, based specifically on me … my tumor characteristics, Oncotype, family history, osteoporosis, cholesterol, etc.
My recurrence risk was very low to start with, so in conjunction with my oncologist, I was able to make an informed decision to try Tam.

Like you, I don’t like all of the medications, and I try to make informed choices, knowing that for me, quality of life is my goal.

I had a Reclast infusion in September, another this coming September, then another DEXA and will decide what future treatments are warranted.

I encourage everyone to research and advocate for themselves - ask questions - if your provider gets defensive or dismissive, it might be a sign that they are not a good match for you.

Jump to this post

So glad your oncologist explained things to you. I was told to start Reclast by the PA,I decided not to start at the time. Have since changed my follow-up cate locally and oncology nurse referred me to my primary because oncology does not order osteoporosis meds. Now my primary is leaving and I have to start back to step one. It is mind boggling that I cannot find continued care from any physician. From my research I am leaning towards Evenity, Tymlos or Forteo. Anyone tried these?

REPLY

hi patclem, I'm on Forteo almost a year. For me it's a dream drug. I haven't had any side effects. Well, my fingernails are harder to clip. Some people have adverse effects from Forteo, but when the medication is stopped it leaves the system very rapidly--so no long term effects. It isn't in my thinking to continue a medication that causes any discomfort.
Tymlos may be a more effective medication than Forteo, but I'm so satisfied.
The effects with Evenity can be sustained over an excruciatingly long several months. I'm not prepared to deprive my body of sclerostin because of it's reported advantage in cardiac valves and joint chondrocytes.
Our bodies respond so differently that we are all guessing at first.
I would suggest getting bone markers before and every three months to get a better idea if the drug is building bone. Wishing you luck

REPLY
@gently

hi patclem, I'm on Forteo almost a year. For me it's a dream drug. I haven't had any side effects. Well, my fingernails are harder to clip. Some people have adverse effects from Forteo, but when the medication is stopped it leaves the system very rapidly--so no long term effects. It isn't in my thinking to continue a medication that causes any discomfort.
Tymlos may be a more effective medication than Forteo, but I'm so satisfied.
The effects with Evenity can be sustained over an excruciatingly long several months. I'm not prepared to deprive my body of sclerostin because of it's reported advantage in cardiac valves and joint chondrocytes.
Our bodies respond so differently that we are all guessing at first.
I would suggest getting bone markers before and every three months to get a better idea if the drug is building bone. Wishing you luck

Jump to this post

@gently I worry that the effects of sclerostin suppression are not adequately studied. Most studies are on cardiovascular effects and those studies showed no difference in risk between Evenity and placebo, and small difference (but significant) between Evenity and alendronate (which might be because alendronate has a positive effect).

But sclerositin is throughout the body, including central nervous system, joints/cartilage....I am having long complicated weird dreams that have no connection to daytime concerns. In some ways that concerns me more than joint pain.

For breast cancer, I was told Reclast , and my cousin is on Zometa- both zoledronic acid. I wonder if doctors are hesitant to prescribe bone builders like Forteo, Tymlos, Evenity because they can't be given when metastasis is possible. Maybe in early cancer this is still an issue if/when cells are still wandering around-???

REPLY
Please sign in or register to post a reply.