Good/bad experiences with Prolia?

SpecialK

stellamaris - just wanted to comment - Prolia is not a bisphosphonate, it is a monoclonal antibody drug. Bisphosphonates (Actonel, Fosamax, Boniva and IV Reclast) work to strengthen bone by coating it and when the bone breaks down the bisphosphonate is absorbed in, whereas Prolia works by slowing the old bone removal process which can accelerate in post-menopausal women with less estrogen and then allows the new bone creation process to catch up. Also because bisphosphonates are absorbed into the bone they tend to stay in the body longer than Prolia does.

stellamaris

specialk, thank you for clarifying that for me. 😉 So much information and I get muddled.

SpecialK

stellamaris - it's hard to keep it all straight - you're not alone in that! Plus, both drugs have the same end goal in the final analysis

MinusTwo

Interesting new study about BC and osteoporosis

New guidance for management of aromatase-inhibitor related bone loss in breast cancer

April 25, 2017

Read more at: https://medicalxpress.com/news/2017-04-guidance-ar...

dpako

I just took my first Prolia shot but I don't think I will take it again. I have Astopenia but my hip went to osteoporosis just a bit. So I don't think I need it. I will only take it if I am at risk of breaking bones. I am two years since the diagnosis of BC. I had chemo and radiation taking Anastrozole now but I don't think my bone density is that bad. I am 70 years old. Any comments? I just don't feel right by taking an injection. My oncologist didn't push it. But when I heard osteoporosis I got scared. But I am more scared with the shot. I am very active hike, walk a lot, lift weights. I think I will wait until the next bone density test and see what happens. My friend takes the shot and no side affects and her astopenia turned around. I am just too scared to take it again. It reminds me of taking chem. Any thoughts?

MinusTwo

I am more scared of breaking hip & being put in a nursing home. Women our age have a very hard time recovering from a broken hip. The area they scanned on your hip is the most likely to break according to my GYN. I am very active too. When I first had osteopenia 10 years ago, I was able to bring my numbers back up to normal by walking & lifting weights & changing my diet. But after the chemo tanked my hip to osteoperosis, I'm not willing to take a chance. I sure don't want to be "warehoused" if I can't get back to walking again.

Yes, there can be a serious side effect with the jaw, but it you take care of your dental problems first it is not very likely. I understand that often just four shots of Prolia (6 months apart) can bring your numbers back up. And truly I had no side effects from the shot. It's NOTHING like chemo or Neulasta. I had more side effects from a yearly flu shot.

dpako

Thanks Minus Two. I am just a neurotic. How long have you been taking the Prolia? Like I said I just don't like to take any meds. I am taking Anastrazole and at the beginning I had joint pain but not anymore. Thanks for the info. I really had no side affects from the chemo and the Neulasta because they gave me pre-meds. But when I had to go back to the chemo room to get that Priola shot I got a little nutty. Please let me know how long you have been taking the shot and if you had any side affects? Thanks.

dpako

Hi Minus Two, any time I start something new I get very nervous. So I still don't know if I should continue or not. Please let me know your thoughts.

dpako

The problem is I am not sure if I am at risk of breaking bones. My hip is only slightly off. But they still called it osteoporosis. I think it was off 1 point.

MinusTwo

Dpako - My hip is only slightly into osteoperosis also, but my GYN was very blunt about the number of people who fall as they get older. Whether it's due to eye site, weak muscles, whatever - when they do fall she said that femoral bone (where they run the scan) is the one that often breaks. Because the hip is a ball & joint construction, it's REALLY hard to repair.

I don't like to take pills or drugs either. I don't take anything but a couple of vitamins - and never have. My cholesterol is up a bit and I'm attempting to fix that with exercise - NOT drugs. But the Prolia is a no brainer for me. BTW - I don't go to the infusion room. I understand all the bad memories. My OB/Gyn gives me the shot in her office. That's fine with my MO. She just insists that Vit D is tested with all the other regular blood work that he orders every 6 months.

This will be my 3rd shot. You can post questions for Special K", who knows a lot more than I do about it than I do. She has two posts earlier in this thread and is still active on BCO. I'm going to take 4 shots and then have a new Dexa scan to see if we're accomplishing anything.

Good luck with your decision.

stellamaris

Dpako, I am now 67. I understand your trepidation. My first bone scan showed osteoporosis in spine and osteopenia in hips. I have had 2 shots of Prolia. It is intended to reduce the expected deterioration of your bones, which my onc said was about 10 per cent per year on the blocker (I am on Femara). I would rather take the shots as long as I can, so that my bones thin as little as possible. I am also very active (hiking, kayaking, etc.). I want to be as strong as possible when I am done with the meds.

dpako

Thank you so much Minus Two and Special K. I read somewhere that it can affect kidneys and raise Cholesterol. We don't need any new health issues. Thanks much. Keep in touch and talk to you soon.

dpako

Hi Stellamaris,

I think we are in the same boat 6/15 lumpectomy 3 nodes involved chemo for 4 months and radiation so I didn't want to introduce anything else in my body. But I don't want to break bones either. Thanks for your comments.

dpako

What bothered me the most was getting the shot in the chemo room it just brought back bad memories. I will try to get it someplace else next time.

SpecialK

dpako - my center has a special injection room just for people needing Neulasta, Prolia, or other injections, but I am willing to bet if you request to have your injection in an exam room that you would be accommodated. You are far from alone in that the chemo room creates some anxiety - lots of folks have that same reaction.

dpako

What are the side affects for Prolia?

SpecialK

dpako - here is a list, but know that the majority, at least on BCO, seem to experience no side effects at all. As with many side effect lists, these may have been caused by the drug, or may have happened to the participants in the drug trial independently - they still have to be noted even if they happened to one individual.

http://www.rxlist.com/prolia-side-effects-drug-center.htm

dpako

I didn't sleep for about 3 nights. But I still think I will try not to take the Prolia anymore. I will see what my oncologist says when I go to her in September.

dpako

Hi Special K,

I just read the side effects. I don't think I will take it anymore. Do you take it?

MinusTwo

dpako - I have had absolutely NO side effects. We each have to make our own decisions. Good luck.

Shelly52

I have had 3 Prolia shots with no side effects. My MO believes the Prolia helps protect the bones from mets. I'm all for that!! I envision it like a protective coating that helps keep the cancer out and helps strengthen.

I have osteopenia as well and will continue to get the Priolua as recommended.

Just my 2 cents.

SpecialK

dpako - yes, I have had two injections every year since early 2012, zero side effects. During this time I have had dental cleanings, fillings (timing carefully planned), I now have Invisialign braces after my dentist conferred with the Prolia manufacturer that it was ok, a vascular procedure on my left leg, and a significant number of breast reconstructive surgeries - zero complications.

Whenever you read a list of side effects it is important to note that the majority of them rarely happen - not to discount when they do happen, but it is usually an exceeding inclusive list. Most people routinely take Tylenol or other over-the-counter pain relievers, but the list of side effects from those is equally daunting. Just trying to add some perspective.

dpako

SpecialK you are a big help. What about your cholesterol has that gone up? I just don't want to add anymore complications to my life and are you allowed to take it for so many years?

cajunqueen15

I rescheduled my Prolia injection to after our Disney trip because I didn't want to take the chance on feeling sick in the Orlando heat with preschoolers. I'm heading in for shot #3 soon. So far nothing crazy has happened, but I would imagine the risk will continue to build over the years.

MinusTwo

dpako - I know you asked Special K and I'm sure she will answer, but from me - after a year - two shots at 6 months apart - NOTHING has changed. Cholesterol is the same. Blood pressure is the same. All of my blood work is the same - including Vit D, THS and Cancer antigen tests.

if you could go to My Profile and add your diagnosis & treatment, and make it "public", it would help us better understand your situation. Thanks.

SpecialK

dpako - my cholesterol went up about 15 years ago when I had a hyst/ooph at the age of 45, due to the drastic reduction in estrogen surgically. Prolia has not had any effect on my numbers. I was on a statin for a while but chose to discontinue it when I had trouble with my blood sugar (prior to Prolia, but after chemo and the start of anti-hormonal therapy), and I now keep my numbers stable with diet. My total number is high, but that is due to my high "good" cholesterol and my triglycerides are fine. My MO is the one who prescribes and monitors and has said as long as I am on Femara I will be on Prolia. He has not indicated any issue with long term use.

dpako

Minus Two I went to my profile and added my diagnosis and treatment but I don't see it show up. Maybe I don't know how to make it public.

dpako

How do I make it public?

SpecialK

dpako - after you fill in your diagnosis and treatment lines you should see that there is a private/public choice that you can click. Private is the default, so you have to make the choice for the info to appear in your signature line.

dpako

Special K I put it in public but all it shows is public. I must have to do something else. What else do I need to do.