Zometa - A Cautionary Tale

pupmom

This is a pretty long story, which I will try to condense, without leaving out crucial details. I also want to state I am NOT recommending that anybody refuse Zometa. It may have kept me from recurring. But I will never know that. My hypothesis that Zometa caused my very extreme orthopedic breakdown is not supported by current medical data, but my husband and I firmly believe it is the culprit.

I was diagnosed with bc in October, 2011. Had a lumpectomy, and was started on Aromasin and Zometa the following Spring, 2012. About two months after beginning the Zometa infusions, I started having extreme right leg pain. It was often so bad I would scream when walking to my car or around the house. I was scanned, of course, but nothing showed up. Then I was referred to an oncologist, who looks at a rare form of muscle cancer. For this I was given an MRI. The only thing that showed up was spinal compression at L4-L5. So, the conclusion was that my sciatic nerve was being pinched and this caused the pain. Made perfect sense. I was prescribed PT, which did help short term. However, the problem kept coming back and became progressively worse.

Fast forward to 2014 and I struggled to get around without a cane, but I still could get around independently. I even took a part time job, which probably exacerbated the problem, as it required quite a bit of walking getting in and out of my office. By the Spring of 2015 I was at a breaking point. I had to use a walker full time, needed a wheelchair if there were distances longer than one-half block to cover, and had scheduled spinal surgery. Unfortunately, right after I scheduled the surgery, the doctor I wanted to use needed surgery himself, and I had to wait another three months.

In July 2015 I finally had the spinal surgery, with great expectations that this would fix me up. Except it didn't. I kept experiencing more and more pain after that surgery. I was seeing my surgeon and my PCP, but neither had a clue about why I was not recovering. I had to put up with accusations of being a hypochondriac or liking the pain meds too much, arrrgh.

For about six months I went through indescribable suffering. (My husband would hear me screaming as I "walked" and said it was like living in a horror movie.) He took over all the household duties and we hired a maid to come by every week, instead of every other week, which had been our norm. He even had to bring me coffee in the morning because I could not make it into the kitchen. And don't even ask me about the agony I went through walking up the three steps from my garage to my house!

Finally, my PCP decided to refer me to a Rheumatologist, thinking the issue might be arthritis. So I went to this doctor with low expectations that he could help me. But, he decided to examine my hips, which NO doctor had previously done, and immediately recognized there was a serious problem. My hips were completely immobile, which I had been trying to tell the doctors for years. So, he ordered a hip x-ray, and this revealed the problem. I had severe necrosis of both femurs. It had become so bad that the tops of my femurs had literally disintegrated. So, now we knew what was going on, and immediately scheduled hip replacement surgery. Now, after both hips have been replaced, I can joyously report that I am almost 100% normal! Still have to use a cane sometimes, but mainly for balance. And I am pain free!

However, the question remained about how this happened, and so quickly after beginning the cancer treatments. Chemo is a known cause of the condition, but I did not have chemo. We suspected Zometa, but there was no empirical evidence. Except, I recently learned that on the Zometa website, bone fracture is reported as a side effect. My guess is that there are more bc patients out there experiencing something similar to what I went through.

Anyway, I just wanted to describe my experience for any who might be having these symptoms and are confused as to why. When in doubt, have your doctor check the hips!

(((Hugs))) to all!