steroid induced osteonecrosis

[Beth]

Charity, here's what we found out yesterday about my son's current problem which I described in another post (he had his whole brain treatments in July) -- the diagnosis for my son is Osteonecrosis also known as avascular necrosis (http://www.niams.nih.gov/hi/topics/oste ... sis_QA.pdf) -- it is a known side effect of steroids -- I really have no idea of the dosage of the steroids that my son took during whole brain radiation (we will be sure to discuss with his radiation oncologist -- please talk to yours as well). We will be seeing an orthopedic surgeon (who specializes with cancer patients as well) late this month. My son is pretty sad -- in nearly 10 years of fighting this disease, this is the most serious side effect, speaking of long-term, debilitating side-effects that he has had.

[Bonni Hess]

Dear Beth,
I am so sorry to hear about your dear son's recently diagnosed painful osteonecrosis. Our dear Brittany also developed steroid induced osteonecrosis following her 2004-2005 long term ( six months) high dosage ( 16 mg.) Decadron steroid usage which was necessary to help reduce her significant post Gamma Knife and brain tumor brain swelling. Her oncologist has prescribed Zometa infusions once every three months to help strengthen the bone. However, Brittany has not yet received this treatment as she has been backpacking in India and Thailand for the past four months, but we will pursue it when she returns from her travels in February since she is continuing to experience bone pain in her left tibia. I hope that this information is helpful to you, and that Zometa may be a possible treatment option for your son. Thank you for continuing to update us on your son's condition and treatment information. We will be holding him in our continued special caring thoughts and prayers, and hoping to hear good news from his next scan results.
With special caring and continued Hope,
Bonni Hess

[Beth]

Bonnie --thank you so much for sharing-- it helps! As for zometa, it's strange that this treatment has been found to be a cause of osteonecrosis, of the jaw (ONJ) in particular, when it is used to treat /prevent bone metastasis in cancer patients. Lots of studies in Pubmed about that. I suppose a treatment protocol for use in steroid induced osteonecrosis would be followed with the doctor's knowledge of bisphosphonates as cancer treatment & ONJ. Thanks again, Bonnie, I hope Brittany is having a fabulous time! Beth

[Bonni Hess]

Dear Beth,
Thank you for your thoughtful response and for sharing the concerning information about the possible very negative side effect of Zometa use. This is an issue which we will certainly consider and explore further before making a decision regarding Brittany's possible treatment with it for her steroid induced osteonecrosis. This is a prime example of the critical importance of researching any potential treatment recommended by the doctors, as certainly sometimes it seems the "treatment" does more harm than good! Although Brittany does have pain in her left tibia, it hasn't kept her from climbing the Himalayas, riding on a camel safari, and carrying a huge backpack throughout her travels in Inida and Thailand, so as long as the pain is tolerable with the use of anti inflammatory medication like Ibuprofen, and she is able to walk and function so well, we may postpone any kind of treatment for the osteonecrosis until a better treatment alternative is found. Have the doctors made any recommendation yet for treating your dear son's osteonecrosis, and is he able to get any relief from the discomfort with pain meds or anti inflammatory medication? We continue to hold him and your family very close in our hearts and special caring thoughts, and we will be anxiously awaiting your next update and praying for good news.
With deepest gratitude for your thoughtful sharing, special caring, and continued Hope,
Bonni

[Beth]

Bonnie -- sorry I haven't responded sooner. The visit with the orthopedic oncologist was yesterday -- he told us that most likely the avascular necrosis was not from the steroids -- based upon our information about the duration of steroid treatment. He said that most likely it was due to the radiation to the area after the primary tumor was removed -- that was nearly 10 years ago. Regardless of the cause, he said he didn't believe that it would worsen significantly, and to use anti-inflammatory medication and rest as needed -- so life goes on, now it is time to prepare for the next scans. As ever, my prayers are with all of our dear children, friends, and families. Beth

[Elaine]

Hi Beth,

Thank you for sharing this important information. Why would your son have these side-effects now, ten years after the radiation therapy? It seems that something else has changed? Did the doctor say there would be improvement?

Elaine Anderson
Unionville, PA

[Bonni Hess]

Dear Beth,
Thank you for your thoughtful update on the orthopedic oncologist's revised diagnosis regarding the possible cause of your dear son's painful avascular necrosis. I am very grateful that the oncologist doesn't feel that the condition will worsen significantly, and that the symptoms should be able to be controlled with anti-inflammatory medications. Like Elaine, I am perplexed as to why this condition developed ten years post radiation therapy. Is this a normal time frame for development of this side effect? I did not realize that your son has been fighting this challenging disease for ten years, and his long term survival and lengthy courageous battle are truly an inspiration to everyone. Our continued special caring thoughts and prayers are with your dear son and your family, and we will be prayerfully awaiting your update on the results of his next scans.
Heart to heart with special caring and continued Hope,
Bonni Hess