Topic: Prolia side effects

Forum: Older Than 60 Years Old With Breast Cancer — Meet other women who are similar in age and dealing with age-appropriate issues.

Posted on: May 12, 2016 11:18AM

Posted on: May 12, 2016 11:18AM

CBurt wrote:

I was diagnosed with Stage 1 Breast cancer Dec 2014. Had surgery in January 2015, Radiation completed May 2015. Because my cancer is estrogen loving I went on Arimidex, and because of that I was at great risk for worsening my osteoporosis, so my Oncologist wanted me to be on bone strengthener. Discussed this with her at length, decided on Prolia. I've had 2 injections (once every 6 months).

I stopped the ARmidex because of the joint pain, and switched to Letrozole. the joint pain was much better. But I'm having a terrible time with UTI's, bladder infections, urinary pain, peeling skin, etc. The UTI's have cleared up with medication, but I'm still experiencing urinary pain.

thank you

Dx 12/18/2014, IDC, Left, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 1/27/2015 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Hormonal Therapy 6/1/2015 Arimidex (anastrozole)
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May 25, 2016 06:43PM stellamaris wrote:

Interesting - I have been on Letrozole since December and I am having a difficult time with my bladder - I have urgency issues and it feels like I never empty completely. I just finished a cycle of antibiotics because I thought I had an infection, but now I am not sure
Dx 10/5/2015, ILC, Right, 4cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 10/29/2015 Lumpectomy: Right Surgery 12/1/2015 Lumpectomy: Right Hormonal Therapy 12/17/2015 Femara (letrozole) Surgery 2/10/2016 Lumpectomy: Right Surgery 3/23/2016 Mastectomy: Right; Reconstruction (right): DIEP flap
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May 25, 2016 07:12PM cive wrote:

Taking Xgeva (same stuff as prolia only twice as much more often) and also take letrozole. Haven't had any side effects except of course hot flashes and trigger thumb. The trigger thumb could also be because of mousing on the puter. Don't do touch pads.

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Jul 21, 2016 01:23PM youngjane52 wrote:

do you think that prolia could be causing the pain? That's one of the reasons I have decided not to do it. Am taking lots of calcium and vitamin d. See the Dr next month and will discuss further.

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Aug 13, 2016 08:15PM Jerseygirl927 wrote:

have had no side affect from the prolia and take letrozole, but just talked with MO and my bp has been up since going on it. I am taking a 2 week break to see if bp comes down, What next,!

Surgery 1/12/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Dx 1/14/2015, ILC/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2+ Chemotherapy 2/25/2015 Carboplatin (Paraplatin), Taxol (paclitaxel) Hormonal Therapy 5/29/2015 Femara (letrozole) Dx IDC, ER+/PR+, HER2+ Dx ILC, 1cm, Stage IA, 0/1 nodes, ER+/PR+, HER2+
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Aug 14, 2016 12:23AM - edited Aug 14, 2016 12:25AM by chisandy

I had originally wanted Prolia rather than Zometa because: Prolia is a shot (can be given into any muscle) whereas Zometa must be infused I.V. (and I have only one non-lymphedema arm and darn few decent veins in it); Zometa makes you feel like you have the flu (muscle, bone & joint aches, fever, fatigue) for several days afterward, while Prolia doesn't; there's increasing literature to the effect that Prolia offers better protection against bone mets; and there are more instances of paradoxical horizontal thighbone fracture on Zometa/Reclast than on Prolia.

BUT I'm on Medicare, with both Part B and D supplements. My Part D is (in)Humana Enhanced, which is a misnomer if ever there were one (it won't even cover generic letrozole unless I “fail" three months on generic anastrozole first). Here's the rub: since Zometa is given via I.V. in the chemo or transfusion suite, it's a “treatment" which Part B, combined with that supplement (BCBS) covers 100%. But since Prolia is a shot, even if administered by a doctor at her office in a hospital cancer center, it's considered a “drug" (theoretically, I could inject it myself) and therefore subject to Part D. And my cheapskate Part D plan (supposedly the best in IL) won't cover one red cent of my out-of-pocket cost would be $5,000 twice a year.

My MO says my osteopenia, combined with letrozole, will eventually become osteoporosis unless treated with either a bisphosphonate (oral like Fosamax or Boniva or I.V. like Zometa) or Prolia. But she also says I'm not at such high risk for progression to osteoporosis that I have to do it right now, nor am I at high risk for bone mets. She suggests that come Oct. open-enrollment, I check to see which Part D plans will cover Prolia and schedule it once my new plan takes effect Jan.1. However, both std. insurers and Part D carriers are cutting their formularies (which drugs they'll cover) and shifting once-cheaper drugs to higher tiers (requiring higher co-pays), and it's possible that what may be covered in Oct. might not be come Jan. 1.

I also read the fine print in the Prolia ad: “severe bone pain has been reported;" “serious infections and cancers have been reported." And that's the kicker--there might be more bone pain, longer lasting, than the fleeting flu-y feeling (repeat 3x quickly) from Zometa; and because Prolia (anything whose generic Latin name ends in “-mab" or “-nib") is a “biologic," to some degree it is an immunosuppressant...and I'm allergic to the three most commonly used groups of antibiotics--penicillins, sulfas, and floxins (e.g., Cipro). What good is stronger bones if I get lymphoma, multiple myeloma, MDS or succumb to a massive infection?

So I sucked it up, put on my big-girl panties and messaged my MO I'd like to go ahead with the Zometa. Waiting for her nurse to get back to me with available dates so I can pick one with nothing to do for three days afterwards besides lie around feeling like crap.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy; Lumpectomy (Right) Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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Aug 12, 2021 09:06PM Cakencobbler1 wrote:

I took Prolia (1 injection) before my BC DX and was in horrible pain the whole time. Of course because it’s an injection there was nothing that could be done. Just had to wait it out. I took the generic Fosamax after that.

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