Good/bad experiences with Prolia?

cajunqueen15

I admit that I freaked out and emailed my MO about the Prolia. I'm not sure why, I've already had the injection so it's not like a decision can be made to turn back the clock. Cancer causes strange bouts of anxiety for me. They dissipate and I feel good and then suddenly, BOOM, I panic again.

SpecialK

I do all of my dental work, except for cleanings, at the half way mark between injections - so, at the 3 month point. I have had dental work done with no issues and I have pre-existing TMJ which has not worsened or caused any additional problems.

smo - I started on Prolia in Feb. of 2012, so I have had 9 so far. For most it can take at least 4 injections before you see improvement to your DEXA, and I was osteopenic for nine years prior to breast cancer diagnosis, but stable without meds. After chemo and six months on Femara I had a significant loss which took me to borderline osteoporosis but by the fourth injection I had reversed to a normal density at all measurement points.

cajunqueen15

specialK - my MO said to do the same thing. schedule things at the 3 month mark. I think if I needed really extensive work, I would probably need to take a 6 month to a year break in the Prolia.

lbrewer

did you see the research that Prolia actually stopped the growth of BC cells?

http://www.foxnews.com/health/2016/06/21/breast-ca...

smo23915

Thank you Special K, I had no idea one could stay on the drug for such a long period.

ChiSandy

Talked to my shrink yesterday, and he said, “heck, if your MO won’t give you Prolia or write the appeal letter to Humana, I’ll do it.” Not a good idea for Bob to do it, as they may see the identical last names (and it’s a very uncommon surname in the U.S.) and smell something fishy. All I know is that the paradoxical horizontal femoral fractures on Zometa/Reclast scare both my PCP and me.

KayaRose

just wanted to mention that I had my first Prolia shot this morning. So far, no side effects. I'm assuming that if i was going to experience anyside effects they would have shown up already. Right?

cp418

SpecialK - how are you still able to get Prolia injections when your bone density has returned within normal range? I thought insurance would block patients. I just had my 2nd Prolia and much prefer it over the prior Zometa infusions which always made me ache with bone pain afterwards. I would be thrilled to continue taking Prolia for maintenance and bone health.

SpecialK

cp418 - my assumption is that insurance is covering since I am still on an AI, with the thought that I would backslide if I stopped the Prolia. In other words, the Prolia is what is keeping my normal density. I also has osteopenia prior to breast cancer due to an early total hyst/ooph prior to natural menopause. My insurance doesn't question much that my MO does - they are pretty cooperative.

Longtermsurvivor

FYI re. denosumab - Prolia breast cancer prevention for high risk women - focuses on recent news release

~Stephanie

It's never OK to use 'holy grail of breast cancer prevention' when talking about pre-clinical animal study

'Holy grail' of breast cancer prevention in high-risk women may be in sight

Health News Review Summary

The news release focuses on the potential of a drug called denosumab to prevent breast cancer from developing in women who have a BRCA1 gene mutation that makes them more likely than the general population to develop breast cancer. The relevant research was published in Nature Medicine. However, the release has some significant flaws. For example, it refers to a "holy grail" of breast cancer prevention for high-risk women, only noting much lower in the release that the work has yet to be proven in clinical studies. Further, even if denosumab does prove to be effective in reducing breast cancer risk for women with the BRCA1 mutation, that would not mean that all "high-risk women" would benefit; there are other genetic mutations — such as BRCA2 and other less common mutations — that can increase breast cancer risk. The release also neglects to address well-known health risks associated with denosumab use.

Why This Matters

Breast cancer affects many women and, by extension, their loved ones. Men are also affected. According to the National Cancer Institute, approximately 12.3 percent of women will be diagnosed with breast cancer during their lifetime, and approximately 1 in 1000 men will be diagnosed with the disease. For women with the BRCA1 gene mutation, that number jumps to between 55 and 65 percent. Men who inherit the BRCA1 mutation also have an increased risk of developing breast cancer. Women with the BRCA1 mutation often take preemptive steps to decrease their cancer risk, including — in some cases — preemptive mastectomies. This is a complex, highly personal decision and has been the subject of significant public debate in recent years. Breast cancer is a high profile disease, and concerns related to BRCA1 have had a particularly high profile. That means that research into breast cancer prevention, and BRCA1 in particular, is likely to garner public attention. It also means that research institutions have an obligation to promote such research fairly, accurately and responsibly. This release could have done much more to highlight the preliminary nature of the relevant findings.

Continued at:

http://www.healthnewsreview.org/news-release-revie...

bride

Hi all,

I had my first Prolia injection a month ago with minimal side effects. My MO told me to take 1200mgs of calcium and 1000iu of D3. From what I've read, it seems there is a lot of contrary advice about taking calcium. Does anyone have any advice on taking calcium while on Prolia? BTW! I'm also on Anastrozole.

Thanks,

bride

SpecialK

I am instructed to take both calcium and vitamin D as long as I am receiving Prolia, but my MO has not been specific on amounts - just what constitutes normal supplementation.

cajunqueen15

I was asked to take the same as bride, also taking arimidex and everolimus. I take a high potency vitamin D supplement as well.

Shelly52

I'm on regular supplement amounts daily, too. Am 6months PFC, approx 3 months into Letrizole and had 1 prolia shot approx 2 months ago. Feeling the aches that others have particularly in th morning and after sitting awhile I am also still fighting neuropathy in my feet. My real issue is my hair. Well, it's on my mind the most. I feel like since I began Letrozole it's stopped growing. Grrrr. It's abt 3 inches long and very fine and thin. I get very little eg hair and no pitty hair either. I wonder if I could have delayed beginning Letrozole until I at least had pixie hair.

Anyone else noticed no hair growth on Letrozole?

cajunqueen15

shelley, i have crazy curly hair now but 6 mos PFC, I am losing my eyelashes! I am taking arimidex. So weird! I am almost a month out from my first shot.

MinusTwo

I had my first Prolia shot 7/6. Like Special, I had osteopenia for a number of years. Chemo threw my femoral neck into full osteoperosis. I'm not on any Als, but I had a DEXA after only one year and the bone loss had increased. (and yes Medicare paid for the DEXA after a year at the recommendation of my doc). The shot was at my OB/Gyn's office (although my MO would have done it) and Medicare & my United Health supplement paid in full.

Like everyone else, I'm worried about ONJ, but I had what dental work that was immediately needed done a month before starting Prolia and just couldn't put it off any longer. My MO said if I have a tooth break & need an implant, I will need to stop Prolia "for awhile". So far no side effects, although I read that constipation is possible. Did anyone notice that?

I've taken calcium for years and was told to continue. I take 4 Citracal w/D every day plus extra D. Total calcium is 1480 per day. Total Vit D is 4760. Vit D used to be 2000 but after I broke my arm the ortho doc said to keep it around 5000.

Shelly52

Cajun- I had full lashes and then lost them again at around 4-5 months PFC. They came back again and look good now. I read that lashes have a lifecycle and since they all came in at once PFC, they're on the same cycle. Will take some time for their life cycles to stagger. I don't know if that is true but it makes good sense to me. 😊

I wonder why you are in Arimadex v. Femara? My doc was strongly for Femara. Hmmmmm

cajunqueen15

Shelly I'm not sure about the Arimidex. As many questions as I asked I just recall him saying they were very similar and we would try different ones if I couldn't tolerate the side effects. And I actually haven't had any problems with the Arimidex. Part of me wants to email him and ask again but I feel blessed that I'm not having any issues so I'm not sure I want to rock the boat anyway.

Shelly52

Cajun-- I totally agree. It it's working stay with it!

Read on another thread about tumeric. Anybody in this thread taking it? Others taking it for achey bones and joints. Thinking abt giving it a try. Glucosamine Condroitin doesn't seem to be helping.

I have my first hair appt in MONTHS tomorrow. I'm expecting a discount due to such few hairs. 😉

cajunqueen15

no, but i doubt it could hurt. I tried black curcumin. It made me gag, lol.

Shelley, is there any difference in AIs with PR? Despite being luminal b, my PR of the IDC was 90%. Or node status? We are both in surgical menopause. Hmmmmm.

stellamaris

Hi All - was sent to the Osteoporosis clinic by my MO, and have been given a prescription for Prolia. I will need special authorization from our medicare system, but I am probably going to go ahead. The osteo doctor said I already have osteoporosis in my spine, and osteopenia in my hips. I have been on Femara for 6 months now. I also have RA (dx 10 years ago). Any advice for me?

stellamaris

Shelley - I have noticed thinning hair. I seem to lose a lot more when brushing and after shampooing, and it doesn't come back.

MinusTwo

Stella - be sure to have your teeth cleaned & any needed dental work done before you start Prolia. ONJ is a rare side effect, but better not to take a chance. My first shot was 2 weeks ago and I haven't had any side effects so far.

SpecialK

stella - my instructions were to schedule dental work (other than cleanings) at the half way point between injections. Minus has a good suggestion that you have a baseline dental appt. so that you are going in to the Prolia process knowing what might be needed. I have had no side effects from Prolia at all, and I have been receiving injections twice yearly since 2012.

stellamaris

SpecialK and Minus - thank you! I will do so

bride

Shelly,

I have hypothyroidism so I had lost most of my eyebrows and eyelashes before BC. My head was very thick and pretty coarse. After it got past the curly stage, it was as before BC. But now it's much less coarse and somewhat thinner. I think the changes are from Anastrozole. It's pissing me off.

bride

Shelly52

Cajun - I don't know about the PR. I only know it was my MO's plan from the start to skip tamoxifen and go right to ovary removal (to get post menopausal) and get on an AI. She believes it most effective. Looks like your MO had the same plan. I also had a high oncotype. Don't know if that was a factor or not. There are a lot of variables.

Bride -- I'm pissed too. Will your lashes grow back? My MO gave me script for Latisse. It's really working. I have better lashes now than before chemo. It's a small history.

cajunqueen15

What is Latisse? my lashes won't hold mascara anymore. I am beginning to think it is not the chemo. They are really thin.

MonaBegonia

I have only gotten the first dose of prolia 8 weeks ago but no problems so far. Good luck!

MonaBegonia

I have only gotten the first dose of prolia 8 weeks ago but no problems so far. Good luck!