Considering Prolia, concerned about its Immune System Effects
I reportedly have osteopenia, which does not appear to have progressed over the past couple of years. I tried Fosamax (and another with a name I've forgotten) a few years ago, and I could not tolerate the side effects. When I had my very first Zometa infusion, I had HORRIFIC side effects, ultimately had to take short-term steroids to manage my reaction, and missed about 10 days of my life. My onc decided I was allergic to it. Anyway, fast forward to his recommendation regarding Prolia, at my last visit. He knows I am highly sensitive to multiple meds and allergic to quite a number as well. He asked me to consider taking Prolia. I have read some research and opinions about Prolia, and I am concerned about its potential negative impact on the immune system. I developed Chronic Fatigue and Immune Dysfunction Syndrome following my last chemo and a severe case of the flu, and I am now disabled as a result.
Would you please share if you have been recommended to take Prolia and how you made your decision to take or not take it? And if you have taken Prolia, what your experiences have been? And, of course, please share any other thoughts, concerns, etc., you might have about this medication. Thanks!
Comments
-
Brendatrue, I had my first Prolia shot last Friday. I have been on Fosamax fo 4+years. I have osteopenia. My MO suggested that I take the Prolia shot because he felt it would offer better protection than the Fosamax. I take Aromasin which will cause bone loss if not counteracted.
I only started the Aromasin six weeks ago so I don't know if the aches I am having are from the Prolia or the Aromasin. It is not disabling just uncomfortable. I am concerned about the meds we must take to prevent recurrence, manage SE's etc. If it becomes too unmanageable I will stop taking them but I want to have the best chance of preventing recurrence and so will atempt to take them and try to manage SE's with exercise, healthy eating and heating pads. Good luck
-
My onc has recommended prolia for me as well. I have been on femara for 4 1/2 years and have osteopenia and getting closer to osteoporosis. He said he's been using prolia on patients for about 2 years and doesn't see many side effects. I just printed out a study about it and am going to try to read about side effects. I am worried too. He said I could be on it and if my bones improve get off of it for a while. I worry it will be a long term thing just like everything else. I know another doctor here is recommending chrondrotin for the side effects of femara--so I'll probably try that and maybe there won't be as much discomfort. Keep posting on what you decide to do....I'm trying to make up my mind.
-
ptdreamers & katymom: Thanks for responding. I tend to be one of those people who wants to avoid taking meds and more meds for the side effects of those meds (although I realize appropriate medical care can provide us with some tough decisions to make), but I also am concerned about bone health. I do take calcium supplements but tend to focus more on getting calcium from the food I eat; I also take glucosamine chondroitin, and it has been very helpful for my knees (osteoarthritis). I manage to exercise at least five days a week, typically most days. I will try to do some more research before I see my onc and I may just decide to wait a few more months before making a final decision. I am really concerned about my low functioning immune system!
-
Anybody else thinking about Prolia or with experiences in taking? Please share!
-
Just came back from my visit with onco & told him of the terrible SE from my infusion of Zometa in Oct., he suggested Prolia every 6 months now as this has less SE & that "he is taking all of his patients off zometa" He is putting it through my insurance & I guess I have some research to do.
-
I am supposed to go tomorrow for my first Prolia injection. I had stable osteopenia for many years, but it has worsened in the 18 months since diagnosis (last bone density scan, same day as fateful mammo/US). I had a bone density at the end of January and it showed worsening and I have only been on Femara for about 6 months, so... I too am concerned about immune system issues - I weathered chemo with no problems as far as opportunistic infections, like colds/flu - so I don't want to break that spell! I guess we will see!
-
I had my first Prolia shot on February 3rd. Minimal aches that could have been the weather(raining alot here). I will have every six months. Seems to have less effects than what I have heard about Zometa, etc. Keep up with your supplements and avoid crowds and sick children whenever possible. Good luck.
-
pt - thanks! I didn't have much of a problem with aching from Neulasta, or even Taxotere, so I am hoping that bodes well for this too. I had been having a lot of aching recently, due to Femara and Herceptin, but now that I am five weeks out from my last Herceptin it seems to have dissipated. I really don't have much exposure to children, as mine are in their 20's, and I am not really in crowds too much, so hopefully no problems there! All my routine bloodwork was really strong in January - completely normal. Good luck to you as well!
-
Just got back from the doctor, who is also recommending Prolia instead of the Fosavance I've been on for the past couple of years. Last dexascan in August showed worsening osteopenia and osteoporosis in the lower spine (I've been on Femara since August 2008). Have to do some reading on Prolia first, though!
-
lindasa - one of the SE's that sounds alarming is the jaw necrosis risk. My understanding is that it is less of a worry if you are not experiencing extensive dental work, previous or ongoing extractions, or other current dental issues. My onc likes the treating aspects too - rebuilding and preventing, as opposed to just preventing.
-
Special -- I discussed the jaw necrosis problem (which has been more the result of the bisphosphonate injections). Apparently, the incidence is much rarer with Prolia, a monoclonal antibody. However, the immune system "can" be affected negatively with Prolia. I'm not allergic to anything that I know of, and I've been remarkably (touch wood!) free of any bacterial infections over the past several years.
Must do a bit more reading on this before making the decision -- although I am leaning towards the Prolia!
-
Got my Prolia injection this morning - totally painless, given by my favorite chemo nurse, who is awesome! Interestingly, I did have to sign a piece of paperwork about insurance reimbursement and financial responsibility. One injection is $2200.00 - yikes! They did register me with the manufacturer. If my insurance declined payment for some reason, the manufacturer replaces the med for the MO office, so little to no financial burden for me. My insurance usually reimburses if a referral/consult is in place prior, and we can prove a worsening bone situation with my latest scan. I did do the FRAX calculation - without factoring in chemo/cancer/Femara, based on my stats of height/weight and bone density scan results I have 24% chance of fracture in the next 10 years, so... It did help me decide to go ahead.
-
tenaj: If you find information that is particularly interesting as you research let us know. I hope you will be able to tolerate it if you decide to try it.
SpecialK, I'm sorry to hear about your bone loss, and I bet you're relieved that your aching has dissipated. I hope your Prolia infusion went well today; please let us know how you tolerate it--the good, the bad, and the ugly, if you don't mind--although I hope it will only be good!
ptdreamers, It sounds like you had a pretty good response. I'm like you with regard to being around crowds and children. I go to shops when they first open, on weekdays, if at all possible, and I am merciless when quizzing family members about their health and their children's health. If I don't ask, they often will expose me to their contagious yuck.
lindasa, I hope you also will let us know what you decide and what your experiences are if you decide to try it.
Overall I tend to worry more about the possibility of bad effects for the immune system, and I would like to have more details about that. The jaw necrosis issue is a concern. I remember when Zometa was first on the scene, various doctors minimized the risk of necrosis and I heard from a number of people regarding ghastly experiences. Of course, I know some who had absolutely NO problems with Zometa. I actually suffered a broken tooth the day after I had my one and only Zometa infusion. I knew much more about my risks than my dentist. Fortunately, it worked out for the best.
I also wanted to mention that my onc today said I have enough other issues to deal with right now, so he doesn't really want me to consider Prolia at this time. However, he wants me to continue to do some research and determine whether I would like to try it by the time of my next visit. I'll be interested to see what other input turns up here. -
I will definitely keep you posted on any SE's. I am hoping that because I had minimal aching with both Neulasta and Taxotere whatever I feel is short-lived. I do get cold sores when I am sick or stressed and did discuss taking a daily Lysine, they said Ican if I wish. I also had a CBC and all my bloodwork is excellent. I had no overt problems with immune suppression while on chemo, so I am hopeful that will continue.
-
SpecialK, My WBC's plummeted the very first time I did Taxotere, and I was prepared for a terrible experience with Neulasta, but I did just fine. My onc was amazed given my history of sensitivities with meds. I'm glad to hear your bloodwork is excellent, and I hope your response to Prolia will be very positive!
-
brenda - thanks! Me too! Your WBC experience is not unusual, but it is good that Neulasta did its job for you. I feel bad for the folks that receive Neulasta and get no WBC boost. They did say today that it will most like take several injections (6 months apart) to see progress of rebuilding bone. Also that I should schedule any dental work, other than a routine cleaning, at the half-way point between injections.
-
SpecialK, I hope you are not experiencing any problems thus far; I'll assume no news is good news!
-
A little aching - what else is new, right? Also a rather sharp stomach ache last night, gone today, so I can't definitely attribute it. I pretty much just feel normally achy from Femara. So, yay!
-
Great news! I hope this works well for you.
-
I received a Prolia injection on January 23 and had no problems then or since. I could never tell it happened.
-
I think I'm missing information here, why is Prolia being recommended in an osteopenia situation? Did you go on an AI, so this would be preventative? I had an extensive workup including thyroid, parathyroid, and kidney tests with an endocrinologist after chemo. I have osteoporosis in the spine, and osteopenia in the hip and wrist. He recommended Fosamax, and felt like Prolia was overkill (also, insurance wouldn't pay for it unless my FRAX score was a certain percentage). I am on Tamoxifen currently, but believe my chemopause contributed to this situation, as well as long-term vitamin D deficiency and low calcium.
He initially thought Prolia might be on the table. My concern with Prolia is it is so new. I'm not thrilled taking Fosamax--after a lot of research, I'm not convinced these drugs produce truly supportive bone material (it is the struts that actually create strength, not just a lot of density, and these drugs apparently do not create the struts of original, healthy bone).
That said, your doctor can best steer you, I'm just glad mine seems to be reasonable and not driven by the most expensive, newest treatments.
I also am modifying my calcium and D intake, cutting my caffeine, and doing weight bearing exercise. My boss had borderline osteoporosis, and with careful calcium consumption and a pretty radical diet overhaul, she improved incredibly over a couple of years. It doesn't all have to be the drugs.
-
For me, my existing osteopenia worsened after cancer, chemo and 6 months of Femara. I cannot tolerate oral meds (Actonel, Fosamax, Boniva, etc.) because of a previous surgery on my gastro-esophogeal junction. I tried these drugs when I was first diagnosed with osteopenia, they are a no-go. I have increased my calcium and Vit D, but still showed loss. My MO likes Prolia because it is treating and preventing, and his patients have not had a plethora of issues with the Prolia so far. I did the Frax calculation - without factoring in cancer and its treatment - my fracture probability in 10 years was 24%.
-
Interesting discussion....First, I'd like to add that my most recent bone density scan showed a slight improvement in my lumbar spine and worsening in my hip. If I remember correctly my FRAX score showed an approx 6% risk of fracture in the next 10 years. I also have read about a possible link between bone density loss in post menopausal women and risk of breast cancer recurring to bones. I believe that the latter is an area of insufficient research--someone PLEASE correct me or add knowledge that you may have. Since bone is a primary site for recurrence of breast cancer, I have one more reason for being concerned about bone health.
Ltothe K, I agree that many approaches may contribute to improvement in bone health. You mentioned your boss's improvement, and I wonder whether she has experienced early menopause, breast cancer treatment (chemo, hormonal therapy), or an illness that places her at risk for osteopenia. Trust me, I am just curious. I have dealt with osteopenia for about 15 years, and I have focused on many approaches, including calcium and Vitamin D supplementation, sunlight exposure, weight bearing exercise (yoga, classical stretch, walking, and low weight workouts). I have minimal caffeine intake (dark chocolate--in very small amounts); I do not smoke and I drink about 3-4 glasses of wine a month. Perhaps I would have experienced a greater progression without these approaches, but I also have seen my osteopenia advance over the years (albeit with a slight improvement as noted above). My onc suggested Prolia, and I am still considering it.
Tampa, thanks for your input. SpecialK, thanks for the additional info as well. Please let us know whether your insurance approves or denies. Anyone else have something to contribute?
-
Hi Brenda, regarding my boss' health, it's a serious hot mess! She doesn't have cancer, but just about everything else. Including a lot of fractures, and so they discovered her osteopenia/porosis early in the game. She uses this supplement, I may start taking it when I finish what I've got now: http://www.lifeforce.net/index.php?mode=products§ion=12&key=9
She also drinks whole, unpasturized milk from a Wisconsin farmer. I have mixed feelings about dairy.
In my case, the reason I agreed to Fosamax despite my general thoughts on the bios was to try and avoid advanced loss. This is a very serious disease, in fact my grandmother died of it. My family history made mine a fait accompli, and I'm sure chemopause will move things right along at a pace that will mean crazier stuff in my future.
I do believe my long-term D deficiency didn't help at all. Caffeine, well, frankly, I ain't giving it up entirely. I am a big believer you've got to have a life, too. A few glasses of wine, candy when I want it--as my onc says, it's good for the soul.
-
Oh, one other thing: for about $80, you can get a rebounder. It is supposed to be fabulous for bone building, and I hop around on it when I watch my evening boob tube.
-
LtotheK, Thanks for mentioning the supplement; I'll check it out. I have to admit, I have a visual image of me on a rebounder, and it's not pretty. I have knees from hell--probably shouldn't say that--need to have a great deal of respect for my body since it has kept me going--and I would be terrified about the thought of messing up my knees further. I do have a therapy ball, and I sit on that and bounce around!
-
Brenda, you made me chuckle, thank you! I have had surgery on my knees. The Urban Rebounder is a good one, you don't have to go nutty, just a nice, gentle bounce when I'm wasting time anyway...not everyone can do it, but well worth a shot!
I did find out that swimming, biking and walking do just about bubkus for bone building. Sigh and moan. Yoga seems to be better than originally thought.
Ah, the full time job our bodies become.
And in other news, would love to hear what this group thinks of Strontium.
-
I'd never heard of Strontium until I read your post. I did a quick Google and found the worldhealth.net article. It sounds interesting, and I would like to know more. Anybody else have comments?
And, yes, trying to be as well as is possible for me is a FULL time job, too.
-
My insurance, UnitedHealthcare, did indeed cover my Prolia. And for abour 50% more than originally estimated by my MO's office. They expected and agreed to my insurance paying $800+ but my insurance company instead approved almost $1300.
-
Very interesting. I wonder what Medicare pays and if private insurance follows their lead. Anybody else have any experience with Prolia or know anything about Strontium?
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team