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Topic: Good/bad experiences with 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: Mar 11, 2016 12:16PM

conniehar wrote:

I will most likely be starting Prolia in the next couple weeks. I am 48 with osteo. I have tried Actonel and can't take it and have had two infusions of Reclast and have not gotten any improvements on my scans. The bone loss is getting worse. I exercise often and focus on weight bearing exercises, take Calcium ,Vit D and magnesium. My current endo sent me to another specialist and no one seems to be able to find a cause for my continued bone loss.

I was terrified to take the Reclast due to horror stories I found on-line but I did it and didn't have any side effects. I am now am terrified to take Prolia. When I go to askapatient.com, there are a ton of posts from people with debilitating pain, etc. I have seen a few positive posts on here about Prolia but am still scared. Given my age, I feel like I can't just ignore it, but nothing I am doing is helping.

Thanks!

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Jun 15, 2017 07:45AM - edited Jun 15, 2017 07:46AM by SpecialK

dpako- not sure - did you click on the diagnosis tab and click all radio buttons next to the questions, and for your treatments? After you do that it gives you a summary where you then click the public versus private choice.If you continue to have issues, I would contact the Moderators for help, as I am not sure why it wouldn't show

BMX w/ TE 11/1/10, ALND 12/6/10. 14 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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Jun 15, 2017 09:04PM dpako wrote:

SpecialK that's what I did but all it shows is public. I guess I would contact the moderators for help.

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 16, 2017 10:33AM ICanDoThis wrote:

I am on Prolia to stabilize my bones after treatment for hyperparathyroidism, which threw me into osteoporosis premenopausally. I took fosamax for 2.5 years, which kept my bones stable. Then BC, and I insisted that I would try tamoxifen, rather than an AI because of the osteoporosis (went thru menopause while on fosamax). Tamoxifen did a wonderful job, and kept my bones stable for 2 years. My oncologist doesn't feel that women who are post-menopausal and still have their uterus should not stay on tamox for longer than that, and as soon I was off meds, I started losing bone mass rapidly.

So, I had 3 parathyroid adenomas out, and went on to Prolia. Have been on it for 3 years now, and my bones are still improving. Still osteoporotic, but better. I have NO side effects, which is wonderful. We are discussing what to do after 5 years.

As others have mentioned, a broken hip is my bugaboo. I had a great grandmother who raised my mom, and who died as a result of a broken hip. We have to balance our concerns and what things we are most scared of. Today, I am doing well in all areas.

Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Jun 16, 2017 05:24PM dpako wrote:

Has anyone experienced back pain from the Prolia shot?

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 16, 2017 09:12PM MinusTwo wrote:

dpako - NO. As we've all posted a couple of times, most of us have NO side effects.

If you're taking an anti-hormonal drugs, that may cause back pains. If you're getting Neulasta shots the day after chemo, that may cause back pains.

If you'll go to "member list" on the left side, then type in Moderators, you will be able to send them a PM so you fix your signature. It's too far for me to go back & re-read all your previous posts to try to remember your diagnosis & treatment to date. Especially since you said you were definitely not going to elect to take Prolia. If you've changed your mind, well welcome. I'm assuming you haven't contacted the Mods as SpecialK suggested since it would be an easy fix to get your signature line taken care of.

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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Jun 17, 2017 06:57AM dpako wrote:

MinusTwo I don't really have back pain it's sort of tightness on my back. I am not taking Neulasta I am done with that thank god. I am only on anztrazole and I got the shot of Prolia on June 8th. Since I was hesitant to take it I guess I shouldn't have. I am going to Spain July 18th and I just hope I have no side affects. I read some horror stories. I should have waited and really investigated and discussed it with my doctor. I just freaked out when I heard on osteoporosis on my hip. My spine is good and the rest I have osteopenia. But everyone at my age has Osteopenia. I will try to fix my signature line.

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 17, 2017 01:21PM MinusTwo wrote:

So you're 7+ days past your shot. If you're OK now, you'll likely continue the same - at least as far as Prolia is concerned. Scare stories are just that. Yes, there are side effects, but people die from peanut butter or drinking milk or choking on a vitamin pill. Just be aware you shouldn't have a tooth extraction.

If you can't put it out of your mind, maybe you ought to talk to your doc about some anxiety meds. Otherwise plan your vacation & quit worrying.

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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Jun 17, 2017 02:03PM dpako wrote:

Hi MinusTwo,

I figured out the diagnosis and made it public. Thanks to you guys the moderators helped. I guess I got to figure out how to add Neulasta the day after chemo. I will try to take your advice and get it out of my mind.

On another note to do wear that glove when you fly for a long time. I have flown to Florida from here 3 hours flight and didn't have any problem. You think I should wear the glove for the Spain trip?

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 17, 2017 02:22PM - edited Jun 17, 2017 02:29PM by ChiSandy

dpako, at 70 the untreated osteopenia alone puts you at 20% risk for a hip or spinal fracture over the next 10 years. Osteoporosis puts you at even higher risk! I had a dear friend who just died at not-yet-71 after she fell and broke her hip 18 months ago. She had osteoporosis. The hip fracture set off a cascade of deterioration and debilitation—she spent 6 months in a nursing home and another 6 months in assisted living before moving to a one-level ranch house when she had to sell her luxury 3-fl. townhouse because stairs were no longer possible. She spent the last 6 months of her life in a wheelchair and only occasionally being able to use a walker, and she was on full-time oxygen. You don't want to risk that! If you don't take Prolia you are at MUCH higher risk of serious, life-threatening (or at least life-altering) fractures or bone metastases than you would be of ANY side effects of Prolia.

Don't diddle around with “not wanting to take meds." A hip fracture can kill. A spinal fracture can deform or even paralyze. Prolia's risks and side effects are much, much rarer!!!!

As to the compression sleeve & gauntlet, I wear it for exercise (anything that gets your blood pumping harder gets your lymph pumping too) and for flights of 4+ hrs. When I fly internationally, I put the compression stuff on 1 hr. before boarding and remove it 1 hr. after landing. If I have a connecting flight of less than 3 hrs., with a layover of more than an hour, I remove the compression at the airport an hour after the first landing and don't put it back on for the short flight.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jun 17, 2017 03:57PM MinusTwo wrote:

Dpako - good job on your diagnosis & treatment specs.

I wear my compression sleeves & gauntlets for ANY length flight - even one hour. I put them on an hour before & remove an hour after I land. Maybe I'm over cautious, but it works for me. I do cheat with the gauntlets & remove them in order to claim my baggage - not having anyone else to handle that job. I also wear them when I do sustained repetitive movements. I HOPE that you went to a certified LE/PT to get measured & that you have been trained in MLD and didn't try to guess at sizes. Don't wear sleeve w/o a glove or gauntlet. Or vice-versa.

Maybe I've already sent this link, but you can find out about proper fitting of gloves & sleeves, in addition to other treatment for LE and how to find a certified PT.

http://www.stepup-speakout.org/


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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Jun 17, 2017 09:59PM dpako wrote:

ChiSandy, I am so sorry for the loss of your friend. But you made a good point. I went to the movies tonight and when I got up my back was stiff I keep on thinking it was from the Prolia because I never had that before. But who knows maybe I am just stiff. I never wore the compression sleeve before but maybe I will for this Spain trip.

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 17, 2017 11:39PM MinusTwo wrote:

dpako - I think you can reasonably blame the hormonal therapy

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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Jun 18, 2017 12:05AM ChiSandy wrote:

dpako, where in Spain will you be going? I miss it. Been to Madrid, Barcelona, Granada & Seville with the Chicago Bar Assn.; and when Bob & I took our Mediterranean cruise after I finished rads, after some ports in Italy we also spent a day each in Palma de Mallorca and Valencia. We disembarked at Barcelona but unfortunately went straight to the airport. I would love to go back to Barcelona, and maybe visit San Sebastian & Bilbao. Bon voyage, and post photos!

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jun 18, 2017 09:10AM dpako wrote:

Hi ChiSandy, I am leaving for Spain on July 18th going to Barcelona, Seville and Madrid and also Lisbon Portugal. I heard Spain is very hot in the summer. I wasn't going to wear the compression sleeve because it's already 2 years since my surgery and 3 nodes out but I better wear it to play it safe.

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 18, 2017 09:18AM dpako wrote:

MinusTwo, when I first started taking the anastrozole I had joint pain but then it went away I can't believe it came back now. Also does anyone have post nasal drip from anastrozole where I cough a little here and there to clear my throat. I never even asked doctors about it because it's really very slight. I always carry a cough drop or some water and it goes away. Any thoughts?

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 19, 2017 04:06AM - edited Jun 20, 2017 07:13AM by Sara536

This Post was deleted by Sara536.
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Jun 19, 2017 03:20PM dpako wrote:

I am not taking statins. It took I think about 3 months. But they told me I need to take the Anastrozole because it really eliminates the cancer coming back by a large percentage.

Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 19, 2017 03:34PM dpako wrote:

This is funny I had no qualms about taking Prolia because my friend had osteopenia and took it without any side affects. But osteopenia is normal for woman at our age. But every situation is different she had breast cancer that didn't go to the nodes no chemo just radiation and she also has Lymphoma so who knows why she took Prolia I guess her doctor recommended it. But now I feel I really should have waited to take the Prolia after I came back from Spain or until Ii had my next bone density test. But it's too late now and will see what happens. When I go to my oncologist next time in September I will discuss it with her. Deep down in my gut I really don't think I needed it. Sorry I am a pest.



Dx 5/1/2015, DCIS/ILC, Right, 1cm, Stage IIA, Grade 2, 2/3 nodes, ER+/PR+, HER2+ Surgery 5/31/2015 Lumpectomy: Right Chemotherapy 7/15/2015 AC + T (Taxol) Radiation Therapy 1/4/2016 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/17/2016 Hormonal Therapy Arimidex (anastrozole)
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Jun 19, 2017 04:18PM - edited Jun 19, 2017 04:19PM by MinusTwo

dpako - if you've read any of our posts, you will know that you absolutely DO need it. As Sandy & others have repeated - you do NOT want to break your hip at the femoral bone. It is, however, your choice to refuse it. But osteoperosis is NOT a normal condidtion for women our age. Many active women never have any bone loss.

Have fun in Spain

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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Jun 19, 2017 08:51PM stellamaris wrote:

i take my shot to my GP. He was so empathetic when I was DX, and I would rather he do it than any of the cancer docs. I find my onc team to be rather distant and dis passionate.

Dx 10/5/2015, ILC, Right, 4cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 10/29/2015 Lumpectomy: Right Surgery 12/1/2015 Lumpectomy: Right Hormonal Therapy 12/17/2015 Femara (letrozole) Surgery 2/11/2016 Lumpectomy: Right Surgery 3/23/2016 Mastectomy: Right; Reconstruction (right): DIEP flap
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Jun 19, 2017 09:09PM ChiSandy wrote:

dpako, Spain is hot in summer, but so is Italy (we did Rome & Tuscany last July, and still had a wonderful time—so will you). By the time you get to your hotel (heck, maybe even by the time you get through Passport Control and collect your bags and step out of the terminal) you will have been on the ground for an hour and can safely remove the sleeve & gauntlet. And any possible side effects from Prolia will be long gone by the time you go on vacation.

I can tell you I had no side effects from Prolia. Osteopenia after menopause is common but not inevitable, all other things being equal. Plenty of postmenopausal women continue to have normal-density bones. But, sadly, for us breast cancer patients, all other things are not equal: you had chemo, which can weaken bones; and you are on an aromatase inhibitor, which will weaken them. Anything that deprives you of estrogen will. Whether or not one’s breast cancer requires chemo or radiation (or mastectomy vs. lumpectomy) or even was accompanied by a different cancer (e.g., lymphoma) has nothing to do with the need for bone treatments. Your friend had osteopenia—whether pre-existing (like mine) or caused by anti-estrogen treatment for hormone-positive bc—and that is why she’s getting Prolia.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Jun 23, 2017 10:07PM cajunqueen15 wrote:

dpako, I had really bad stiffness and joint pain taking anastrazole. I switched to brand-name Arimidex and have had some relief. I'm still stiff but not nearly so painful.

I had my 3rd Prolia injection today. So far, just a sore belly.

35 @ dx. BRCA2. Disciple, wife, mother of twins (4) & son (3), attorney. e3 trial (complete). Blue/MammaPrint, High-risk Luminal B. Prolia (start 6/16). Dx 7/22/2015, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+, HER2- Dx 8/28/2015, IDC, Left, 1cm, Stage IIA, Grade 3, 2/11 nodes, ER+/PR+, HER2- Surgery 8/28/2015 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Surgery 4/12/2016 Prophylactic ovary removal Hormonal Therapy 4/19/2016 Arimidex (anastrozole) Surgery 8/1/2017 Reconstruction (left): Silicone implant Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol)

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