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Topic: How long should I take Prolia?

Forum: Bone Health and Bone Loss — Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Jul 3, 2019 08:25PM

elsie1234 wrote:

Hi Everyone - I posted this on a different forum but did not get any responses, so I am trying this forum:

I started on Prolia almost three years ago as my DEXA scan showed osteopenia after being on letrozole for 6 months.  I've tolerated the Prolia well, and my most recent DEXA scan showed some improvement. I think my MO may want to stop my Prolia when I go in for my next appointment.  I was feeling some reassurance being on Prolia for both osteoporosis prevention and more so because of possible recurrence prevention. I've also read that coming off of Prolia can cause rebound bone loss. 

How long have others stayed on Prolia? I am particularly interested if people have been on Prolia even with normal DEXA scans or just very mild disease, mainly for recurrence prevention.   

Are there recommendations for this type of situation?  Thank you!

Dx 5/2015, IDC: Tubular, Both breasts, 3cm, Stage IIB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 4, 2019 08:59AM edwards750 wrote:

I don’t take Prolia but I do have osteoporosis. Why would your MO take you off of it? I take Boniva once a month and Vit D3 and calcium. I had osteopenia when I was DX but my MO prescribed Arimidex which attacks the bones. I was on it one year before I complained to her. I know it was prescribed for post menopausal women so that made sense but not for someone who already had bone issues. She switched me to Tamoxifen after one year but the damage was already done. Believe me you don’t want to get osteoporosis it’s brutal at times.

My internist suggested Prolia but I didn’t want to pay what it cost at the time. She thought a shot 2x a year would be better for me than taking a pill monthly. I elected to stick with the monthly pill.

Maybe someone who takes it will chime in.

Diane

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Jul 4, 2019 04:40PM trinigirl50 wrote:

I am on Letrozole, diagnosed with osteopenia. I have 6 monthly IVs of Zometa (similar to Prolia). My Onco said I should stay on it for 5 years because of my osteopenia, but the standard time is 3 years. However I see some women on this board are on it or Prolia for many years.

I plan to stay on Zometa as long as I take Letrozole (minimum 6 more years) unless there is some medical reason that I shouldnt.

trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Jul 4, 2019 04:52PM SpecialK wrote:

I was osteopenic prior to diagnosis with breast cancer and it worsened after chemo and six months of letrozole. I started on Prolia in Feb of 2012 and continued it twice yearly for six years, stopping in March of 2018. My MO wanted to see what happened if I stopped, but had previously indicated I would be on Prolkia as long as I was on letrozole. I ended up going off letrozole a few months later, having been on it for a total of just over seven years. I was an exceptional responder on Prolia gaining back 29% of my density, putting me back into a normal measurement. My last DEXA was done six months ago and I have maintained that gain despite having been off Prolia for almost a year at that point. There are some studies on folks on Prolia for 10 years with results that showed no deleterious effect.

https://www.thelancet.com/journals/landia/article/PIIS2213-8587(17)30138-9/fulltext

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Jul 4, 2019 05:37PM moth wrote:

Right now my endocrinologist is planning to keep me on it for 5 years. She said that you can (and should) 'lock in' the bone with a biphosphonate before you stop the injections. She said there's a protocol specific for coming off it to keep the bone density from rebounding back down so maybe ask your dr about that when you're ready to come off it.

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Jul 4, 2019 07:07PM SpecialK wrote:

moth - I have read the same thing, that you should get one infusion of Reclast as you come off Prolia. I was unaware of that suggestion, and my MO didn't suggest it either, but I seem to have done very well - could just have been lucky though.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Jul 4, 2019 11:25PM MinusTwo wrote:

My doc said 6 years and then a break. I'm about to take shot # 7, so I'm starting year 4.

Special, thanks for the info about Reclast coming off. I'll discuss that with my MO when I see him this fall.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 8, 2019 10:45PM elsie1234 wrote:

Thank you everyone for your responses!  I see my MO in July for my routine appointment and it will be 3 years on Prolia then. He and his nurse practitioner have both previously mentioned that 3 years is typical (similar to what trinigirl50 said).  But I am encouraged to see that others have taken it longer, as that is what I would like to do as well. Thanks again!

Dx 5/2015, IDC: Tubular, Both breasts, 3cm, Stage IIB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

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