Considering Prolia, concerned about its Immune System Effects

vickilf

Wow what a decision to have to make. So many side effects turn up years later with prescription drugs. This one hasn't been on the market very long.

My onco just said " your taking it", I asked what are the side effects "Every drug has side effects " Wow, great onco hun?  The reason I got CLL cancer they think is because of the side effects of Statin drugs, I am also allergic to lots of precription drugs and get severe breathing problems. CLL is cancer of my immune system, and Prolia may have negative effects on my immune system, just what I need. I don't know what to do.

Well I was given my first shot of Prolia in March, I haven't had any side effects so far, wonder with each shot if side effects will turn up later on.

So my understanding is we need to make our bones stronger so the cancer doesn't get in our bones? Is this what your doctors are telliing you?

I went to my naturopathy he said because my bones are soft, the cancer can get into my bones easier. I need to make my bones stronger, I don't know what to do.

vickilf

Brendatrue

Vicki, Yeah, the decision is a tough one. I must admit that I am really surprised that your MO would just say, "You're taking it." I hope you felt like you had a choice. I may not understand like I should, but I have heard the "soft bones may be an inroad for mets" theory has not been proven, but that many researchers believe there is some support for believing that theory. Are there no other ways to strengthen your bones that might work for you and not have the potentially negative impact on your immune system functioning? Did your naturopath have other ideas for building your bone density?

Living with cancer and the legacy of cancer treatment can be really challenging. I hope you get more answers from others beside me and that you let us know how you manage over time with Prolia.

And thanks, Otter, for your post as well.!

crazy4carrots

Well, I had a long talk with my GP today about Prolia and the long and the short of it is that -- depending on the results of my blood test measuring calcium and Vitamin D levels, I'll do the "Prolia thing".  He has several patients on it, with zero SEs, which was good to hear.  He hasn't got any stats on whether or not it's actually helping his own patients - yet.

Brendatrue

Lindasa, I hope your experience is a very positive one. Keep us posted!

Brendatrue

Just a little update: I saw my gynecologist today and asked her about using Prolia. She joined my internist in saying that she would not recommend it for me. She added that she prescribed this medication for people who don't have significant immune system concerns and that my history would prevent her from thinking that it would be a good option for me. Now at least I have agreement between my gynecologist and internist; it will be interesting to see what my oncologist says about their opinions.

crazy4carrots

Just a quick update:  Had my first Prolia injection on Thursday and so far, no SEs!  My older sister started Prolia about 2 months ago and has had some pain in her left leg.  But -- she also has arthritis and doesn't attribute the pain to Prolia.  Hope that's true!

Lee7

I wonder if anyone can tell me how to tell if I am getting too much calcium? Do just add up the amounts?  I really do eat a lot of calcium rich foods, and have added a supplement at times.  Can they test for it like Vit D?

SpecialK

lee7 - a standard blood test known as a CMP (complete metabolic panel) will test the calcium level in your blood.

Lee7

Hi K!

I've had those labs and was wondering about the one that said Calcium. My number has creeped up over the past year. The range is 8.6-10.2 for normal and my last one said 10.1.  I thought it might mean I'm losing more bone mass.

I'm going to ask about Prolia because I am not taking the Fosamax and it sounds more promising.

sweetcorn

I will have my second injection of Prolia on August 14.  I did not have any side effects for this drug.  I will be curious to have another bone density test to see if it works.  That probably won't be until next year.

Jane

SpecialK

sweetcorn - I am due for my second Prolia in August as well and have had no discernable SE from the first injection.  My onc did say it could take up to 2 years for improvement to show for the loss that has already occurred, but in the meantime the drug is preventing further loss. 

ptdreamers

Mine is scheduled for August 6th. No problems from the first one that I can tell.

n_s

Is Prolia better for ER+,PR+HER+?

ptdreamers

I don't know I'm ER+PR+ HER-. Maybe another sister might know. I am going for my third shot in February. No problems so far.

sweetcorn

I also got my third Prolia shot in February.  Not any side effects at all.

crazy4carrots

Had my second shot of Prolia this past January.  No colds, no flu, no immune system disorders, and the bone density is holding steady!

Member_of_the_Club

I just got my first shot of prolia and came here to read others' experiences.  My onc says he sees very few side effects on it.  I've experiecned a sharp drop in bone density since going on arimidex and am now osteopenic.  I am a runner and have lifted weights for years, but it hasn't been enough.  I have other risk factors for bone loss -- family history, small stature, pale -- so I had no hesitation.

sweetcorn

Is joint pain a side effect of Prolia?  I also take Evista instead of Tamoxifen.  My right hip hurts at night, but I do not have any trouble at other times.  I even walk stairs daily for exercise, along with other walking.

sweetrose8

Hello Sisters, Lots Of Health Wishes To You All !

As the topic says, I am also concerned on the side-effects of it! My oncologist has prescribed it to me but as I have just started Arimidex on 23rd April 2013, I still have time to get first injection of Prolia. But as I searched about it, the side-effects worries me like a nightmare!!! I do not want to have any more side-effects, not do others!

I guess that we were optionless in taking AI's (Aromatase Inhibitors) as that was the only medication to keep us a little safe, regardless the other dreadful side-effects. But oh, no. Treating a severe side-effect of another medicine (Arimidex) with a medicine (Prolia) that also has severe side-effects!!!! What's going on??? Well, will they also treat the second side-effects with another medication.. and thus the cycle would go on? It's devastating!

Sorry for been so negative, but that is how i'm concerned. My heart will never accept Prolia. But what other option do I have? This has kept me wondering... 

fondak

sweetrose8 I completely understand where you are at.  I learned today that after 11 months of aromasin I have osteopenia.  Not even a year ago I went from very strong bones to this.  It's a little confusing as to how to proceed.  Being stage lll, I really don't want to drop the aromasin but I don't want to take anything else....yet....I need my bones! 

When they called to tell me the results the dr was out but they will call Monday for an appointment.  I am not sure how much that will help.  The nurse said she will probably put me on zometa or prolia.  I'm trying to learn what I can before then.

Outfield

I am also looking at these issues.  The whole "FRAX" thing frustrates me so much.  I'm 47 and already osteopenic from my AI. I don't care about my 10 year fracture risk, I care about my 30 year fracture risk.  I could probably handle a fracture within the next 10 years, but when I'm older?  Who knows.  And who knows if I'll make it that long, the first battle is surviving an aggressive stage III IDC.

At least for now I don't have to make any decisions because I'm right in the middle of serious dental work - bone grafts so I can have implants.  

Pawprint

Posponed Prolia shot cause of kidney stone surgery next week, but will be getting my Prolia in December. Since being on Arimidex 3-1/2 years I have osteoporosis

SpecialK

I just had a DEXA scan done after having my 4th Prolia, with no side effects, no illness, no problems. I thought you might like to see my numbers in case it helps with any decision making. I finished chemo in June of '11, Herceptin in Jan. of '12.

I had a DEXA done 9/9/10, same day as my mammo and US that led to dx so I had a good pre-treatment baseline, although I was already osteopenic but had been stable for many years.

Lumbar Spine was -.06 pre-treatment, -1.4 post-treatment, and -.02 after Prolia.

Left Femur was -1.2 pre-treatment, -1.4 post-treatment, and -.08 after Prolia.

Right Femur was -1.2 pre-treatment, -1.3 post-treatment, and -.08 after Prolia.

Femur total was -.06 pre-treatment, -.08 post-treatment, and -.04 after Prolia.

Femur total right was -.09 pre-treatment, -1.1 post-treatment, and -.07 after Prolia.

All of my measurements have returned to normal range after Prolia - I had been osteopenic for ten years prior to breast cancer diagnosis. I do also take calcium and Vitamin D as advised by my onc, and endorsed by the manufacturer of Prolia. My DEXA scans have all been done on the same machine, this is recommended for accuracy.

Pawprint

Specialk

Thank you for posting your numbers. Prolia really improved your bone loss. I should be getting my first injection next week. I had to pay a large copayment. It sounds like a good medication. 

Blessings2011

Ladies - how often are you getting DEXA scans?

I had my first one in 2009, prior to BC, showing osteopenia. My PCP ordered Fosamax, which I refused due to the SEs I read about. I just stuck to weight-bearing exercises, calcium, Vitamin D, and magnesium.

In December 2012 (post-BC and after four months on Anastrozole), I had another DEXA, and the results were pretty much the same as the original numbers.

I stayed on Anastrozole for a year until the SEs got too disabling. Now I've been on Femara (letrozole) for two months.

DH has incurable kidney disease, and is on two immune-suppressing drugs: Prednisone and Cyclosporine. If he were to get sick, his body could not fight off the infection. Subsequently, we both wear surgical masks to doctor's or hospital appointments, use hand sanitizer faithfully, and spray our shoes with Lysol before entering the house. 

But in the three years since he's been on these drugs, he's never gotten sick, and I have come down with every bug in the book!!! I do know that letrozole is an immune-suppressant, so I would be very leery trying a drug like Prolia.

Should I be asking my MO for regular DEXA scans just to see what's going on in there?

jill47

Blessings....I would ask your MO about getting a new DEXA (not sure if you were post menopausal prior to your first scan).  Last month my MO ordered my 1st DEXA as a baseline since I went straight to post menopause after my th/bso in Aug. I'm 49.  My results were normal MO said I should have it next year since I'm high risk for osteo (white, thin & no estrogen) then he'll decide if annual or bi-annual after that.  Your GP can also order the test. Best, Jill  

Blessings2011

Thanks, Jill - I was about ten years post-menopausal at my first DEXA in 2009. (Had a hysterectomy at age 49.)

The MO used that as a baseline when she ordered the second one in 2011. I'll see her after the holidays, and ask if this is something that should be monitored regularly since I have four more years on the Estrogen-Sucking Drug (Femara).

Momine

Blessings, I already had osteopenia on my spine prior to starting letrozole. My hip has held steady on the AI, but the spine has gotten worse. The ortho I saw recommended that I do a DEXA every 6 months to monitor. My onc is all twitchy to put me on prolia, but I have refused so far.

sandilee

Prolia is the same drug, but in a lower dose, as Xgeva, which many of us with bone mets are on. I took Xgeva for   2 years and it has improved my bone strength and helped heal my bones when they were compromised by fractures.  I've had no side effects at all- only felt better regarding bone pain.

  When I was stage I, my onc wanted me on Boniva for my mild osteoporosis.  It made me I'll, and I worried about the side effects, so I stopped after one dose.

I will always wonder if the Boniva would have helped keep my bone mets at bay.

   I really like Xgeva. After two years of once a month, I'm now on a quarterly dose as my onc is conservative and aware of the potential problems of long term use. I completely get the fear regarding these drugs, but for those at risk for mets or fracture, a short term treatment of Prolia might be worth trying.