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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 4/14/2015 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, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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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.

Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/12/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/17/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab)
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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, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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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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Sep 18, 2019 10:05AM cp418 wrote:

Can someone post a link to the article - research indicating taking Reclast after Prolia? My oncologist does not share any information - it's like drive thru Mac Medicine in/out the door. I was on Prolia for about 5-6 years and the last July visit was told no more Prolia because my Osteopenia was 'stable'. Maybe some change in the insurance coverage dictating what they will cover? I assumed my osteopenia was stable because of the Prolia and I have the majority of the bone loss in my right hip. If I ever get a fracture I'm sure it will be the right side.

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Sep 18, 2019 01:08PM OlgaE69 wrote:

I found out that I had osteopenia in 2010. Took Actonel until 2015 then switched to Alendronate and then In July 2017 she started me on Prolia. I am glad to have just two injections a year and it seems to be very effective - which is what matters most.

I have tolerated all of it well although at one point I slipped into osteoporosis. Prolia has brought me back up to osteopenia.

I just had a biopsy yesterday and am awaiting the dreaded results. But I was wondering how cancer meds would affect my bones, too.

I am 69. Never before had a negative report after a mammogram so a bit shocked. Oddly enough I have a complex cyst - not the usual "mass" most women deal with.


All best to you!

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Sep 18, 2019 03:38PM SpecialK wrote:

cp418 - here is some info about Reclast after Prolia, it’s in an answer by Dr Deal.

https://my.clevelandclinic.org/health/transcripts/6949_osteoporosis-get-the-facts

Additional info, look for the Denosumab section.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4472120/

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, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Oct 6, 2019 12:31PM aletamad wrote:

I started to se a new MO recently because my first one moved to another state. When I had my follow up with my MO last week, I also had my 4th prolia injection. She said I would have 2 more injections for a total of 3 years because recent research shows that there is not much improvement after that and the benefits don’t outweigh the risks. I am do to have my next DEXA next year(2020) and I’ll see then what my rheumatologist and PCP also say

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Feb 13, 2020 12:18AM MinusTwo wrote:

I called Amgen today to get more information about how Prolia effects cholesterol. They were very helpful. A trained pharmacist took my questions and had a nurse call me back promptly. In a 3 year trial with 7800 women from 60-91 years of age - 1/2 were given Prolia and 1/2 a placebo. The numbers aren't much, but they are there. 7.2% in the Prolia group had raised cholesterol. 6/1% in the placebo group had raised cholesterol. So they are listing it as a possible side effect, but no way to know if it's more related to the drug or the age of the participants.

My HDL is fine but my LDL keeps going up. Unfortunately I expect my PCP is going to tell me to quit eating butter. It's the only thing left that could be causing the LDL increase. Actually I've given up most everything else I love, so I probably won't.

While I had them on the phone, I asked about the "new" data regarding fracture risks when stopping Prolia - either for good or for a 'drug holiday'. Yes, we should talk to our docs about another resorptive therapy if/when we quit Prolia since there is a significant bounce back factor that eventually settles at pre-treatment levels around 18 months after the last injection. There are measurable vertebral fractures - some as early as 7 months after stopping Prolia. Kind of shoots a hole in my docs original plans to lay out a year & then start over.

As for how long you can stay on Prolia, they don't offer guidelines but they do have people who have been getting Prolia shots for up to 10 years.

Interesting particularly since I am NOT ER/PR+ and have not taken tamox or als. My DEXA scan has moved from osteoporosis caused solely by chemo up to osteopenia, but I still can't imagine quitting.


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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Feb 13, 2020 05:20AM edj3 wrote:

MinusTwo, good to know.

I am HR+ but bailed on the tamoxifen after a couple of weeks due to dangerously high heart rates during my runs. The only other drug that was new to my body then was the Prolia so it will be interesting to see if I have the same issue in March, when I'm on tap to get my second injection.

And my osteoporosis appears to be the genetic hand I was dealt. No one else in my family history has it (same thing with both kinds of cancer, I'm just special).

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 13, 2020 04:24PM MinusTwo wrote:

edj - it's such a small percentage. I was just searching for any possible cause so I wouldn't have to blame butter.

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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Feb 13, 2020 10:10PM MinusTwo wrote:

bumping to keep this going. The more input the better.

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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