My daughter, Erin Nicklas was diagnosed with osteoradionecrosis. There is little information about osteoradionecrosis of the sternum on the internet.

Erin wants to help other people battle this disease.

Erin has tried Pentoxifylline and Vitamin E. This is documented in National Institute of Health Studies and in studies in France as a treatment that can reverse some of the damage to tissue from radiation. However both times Erin has taken Pentoxifylline she has been admitted into the hospital with severe vomiting, dehydration and high heart rate.

We are researching ways to compound the Pentoxifylline drug and decrease the dosage. After Hyperbaric Oxygen Therapy and when she is well enough she will try using the Pentoxifylline, Vitamine E and a bisphosphonate (Fosamax). All of these drugs have been used in France to treat and heal radiation damage.

Pentoxifylline, Vitamine E & Clodronate (bisphonate) research
http://www.ncbi.nlm.nih.gov/pubmed/15641107
http://www.ncbi.nlm.nih.gov/pubmed/20638190


Currently Erin is in the hospital in severe pain. When she improves we will drive her 90 miles every day for 30-40 Hyperbaric Oxygen Therapy treatments in Oklahoma City.

Erin is in severe pain which is being treated by doctors with heavy pain medication.

She is documenting her treatment and battle with this disease on facebook.

Blowrance,

Sorry you and your daughter are going through this. The PENTOCLO regimen is used in Europe and Canada as well. Spain is using Pentoxifylline, alfa Tocopherol and HBOT. Clodronate or clodronic acid is a very old bisphosphonate and only approved in Europe and Canada. PENTOCLO regimen uses very old drugs and I have not been able to determine why these older drugs were chosen over new ones, ie Fosamax. I have been emailing a couple study doctors to see why. I have been experimenting for months as the protocol here, without the bisphosphonate has been used in the US since 1992.

I am not sure the Pentoxifylline is causing the nausea. Are you sure it isn't the Fosamax? Bisphosphonates are a little tricky and some do slightly different things. Clodronic acid is good at reducing serum calcium and harvesting calcium from tissue, it is believed. It is believed to be an excellent drug for parathyroidism. I have been researching with a pharmacist to see which bisphosphonate works as close as possible to clodronic acid.

Pentoxifylline is primarily a vasodilator and I experience massive expansion of peripheral veins within the first 24 hours of use. Another characteristic is the ability to change blood viscosity which allows it to permeate areas blood isn't flowing correctly. It is extremely dangerous when administered in full strength which is why it was it is formulated as extended release. It should not be crushed.

The Vitamin E showing the most efficacy has been alfa Tocopherol which is a very old version. It is a blood thinner as well.

Some things to consider. Unless serum calcium is already elevated which is the case in cancer patients, the bisphosphonate can seriously deplete calcium. The parathyroid clears calcium and bisphosphonates aren't typically prescribed unless the parathyroid hormone, PTH is elevated. Also, a downside of Pentoxifylline is some people cannot tolerate this older drug from a bone marrow perspective. It is critical to monitor the blood on regular intervals, ie 30 day windows, for reticulocyte counts. If they start going down, it must be discontinued immediately as an incurable form of anemia is a possibility.

Lastly, in order for this combination to achieve maximum potential, the cardiovascular system has to be able to move blood. Many people during treatment are sedentary and this could reduce blood flow which reduces efficacy of this protocol.

I hope Erin's pain gets managed correctly and especially the treatment proves successful and sustainable.

This same protocol is used for radiation fibrosis management, too, with limited success, as ORN and fibrosis are both a result of vascular restriction.