Good/bad experiences with Prolia?

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

dpako

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

ICanDoThis

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.

dpako

Has anyone experienced back pain from the Prolia shot?

MinusTwo

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.

dpako

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.

MinusTwo

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.

dpako

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?

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.

MinusTwo

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/

dpako

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.

MinusTwo

dpako - I think you can reasonably blame the hormonal therapy

ChiSandy

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!

dpako

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.

dpako

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?

Sara536

Depako, I stopped Anastrozole after a few days. The really excruciatingly bad pain stopped but sore muscles and joints continued on a lesser level. I've been blaming the anastrozole. I've had a drippy nose for quite a while before the anastrozole. I was checking side effects of all my drugs on Drugs.com and a drippy nose as well as muscle aches can be a side effect from Atorvastatin. I stopped taking the Atorvastatin and both went away. Now I'm thinking I might give the Anastrozole another try hoping to have a better time of it now. Maybe the combination of the statin and Anastrozole were making the pain worse. I can't find any information about a drug interaction on line. Are you by chance taking a statin? How long did it take for the joint pain to go away after you started Anastrozole?

dpako

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.

dpako

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.

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

stellamaris

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.

ChiSandy

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.

cajunqueen15

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.

bride

Hi,

I’ve been Prolia for 2 years. I always feel fairly rotten for a few days afterwards. And despite the Prolia, working out and taking my calcium citrate and D3, I’ve gone from osteopenia to osteoporosis. Sigh. Oddly, Anastrozole gives me no problems.

bride

MinusTwo

Bride - Sorry your bone quality has gotten worse. Chemo is what threw me into real osteoporosis. So far I've had 3 Prolia shots 6 months apart with no SE's that I can identify. I too take large quantities of calcium & D-3 and have been doing my best to do weight bearing exercises at least 3x a week all year. Next month I will have my first DEXA scan since I started the Prolia. Fingers crossed - hopefully I will have reverted back from osteoporosis to osteopenia. And based on my blood work, I will have Prolia shot #4 in January.

bride

Minus Two,

Yeah, chemo messes with your bones, no,question about that. So do AI’s, I’m on Anastrozole. My first DEXA, done about 6 months prior to my IBC DX was normal. After chemo and my first 6 months on my AI (and a couple of months after my first Prolia injection), my DEXA showed osteopenia. Since then, my DEXA’s have shown a slow but steady move to osteoporosis. Thankfully, there are a lot more treatment options now as compared to 5 years ago. I see my MO on 12/8 and we’ll decide how to proceed. In a way, I’m less worried about the osteoporosis and just really pissed of that the side effects of treatment seem to go on and on and on.

Generally, I’ve thought of my cancer as a challenge, but I’m getting worn out and just want a “new normal” that isn’t constantly changing.

I thank you for letting me whine and really, really hope,your DEXA will show that your bones are growing stronger and stronger! Let us know, ok?

bride

MinusTwo

Bride - I see my MO the same week you do. I will be interesting to compare what they recommend. I know I have it easier than you do because I am ER/PR negative, so no Als.

cajunqueen15

I'm having my first DEXA in April since my original which diagnosed osteopenia. All I can do is pray it doesn't get worse since I'm 37. :

Faith-840

I was osteopenia for years until I started on letrozole and Ibrance and then they found osteoporosis in my hip joint. I guess I've been very lucky that it wasn't until now as I'm already 77. I believe years of exercising in one form or another with many occasional breaks and also eating well and taking calcium and Vit. D3 helped. I just had my first shot of Prolia yesterday in my belly. It hurt just a bit and so far I don't feel any other SE's.

MinusTwo

Just realized i never checked back in November. My MO said if/when I discontinue Prolia my bones would revert to deficient rapidly. ".,..over the first year off therapy, BMD declines significantly & fracture risk increases " according to a report in August 2017. His thought is to stay on Prolia for 5 years and then off for "a while" & then start up again. I go in to my Gyn for the 4th shot next week and will see what she says.

There was a 'FREEDOM' study testing a single infusion of zoledronate 6 months after the last Prolia (denosumab) to see if it would hold the gain, however the authors conclude that a single infusion after 7 years of Prolia "is not sufficient to preserve the BMD (bone mineral density) gains that result from long-term denosumab treatment."

CajunQueen - good luck with the DEXA.

Veeder14

I got 3 injections of Prolia and felt like I had the flu each time. But the reason I quit using it is that I had a tooth that was abscessed and needed to be removed. I couldn't find an oral surgeon that would pull it. Having an untreated tooth abscess could straight to your brain. Finally, my doctor and the oral surgeon agreed that being off Prolia for 6 months, it would be ok to have the tooth pulled. Oral surgeons think it's too risky to pull teeth and do major dental work on patients taking Prolia. That was enough for me, and I have never gone back on it, just take Calcium/Vit D. My bone density is not good though. Before using Prolia, I was on Forteo for 2 years, twice so total 4 years and my bone density improved however since I didn't follow up with a bisphosphonate, I lost all I gained. Now with breast cancer treatment (not sure what) but if it involves blocking estrogen then my bones will get worse.