Fortunately, common sense eventually surfaced after I called the drug company, Celgene, and spoke with the Chief Medical Officer, Jerome Zeldis. He, by the way loves the weather, so we always hit it off, and we were familiar with one another from events that we attended. I told Jerry how senseless all this was, and he told me not to worry that they could set up a compassionate use trial through Dr. Cooper, and I could receive both Revimid and Dex. There was a lot of paper work involved with this new trial of one, but Dennis Cooper was opened to it, and thanks to his warm and wonderful secretary, Carol, we had the trial up and running within a month.

 

I was getting better again – in fact, the cancer even seemed to be fading. That was in 2003, just after my grandson was born. I had to get better. As Ken Anderson said, I was going to help with his college tuition.

Still, after two years on this drug, I had considerable back pain, but none of that seemed to be directly related to the myeloma numbers. The cancer protein was practically non-existent. That led to some tests to see if there were some other reasons for my discomfort, and you know what it could be? The longterm use of bisphosphonates – Aredia and later Zometa.  The tests showed that possibly I had adynamic bone – the condition where bones neither breakdown or buildup, but just spontaneously fracture. The suspicion was that the osteoclasts which break down the bone were totally shutoff by the treatments of bisphosphonates, but while nothing was flowing out of the bone pipe, nothing was flowing in, either. The osteoblasts which build up the bone were shut off, too. In late 2004, studies at the University of Texas were showing that to be the case for women who were on Fosemax for long periods of time, too.
 

Curiosity led me to have a bone biopsy – not a bone marrow biopsy, but a biopsy of a bone chunk taken from my hip. Now, for someone who is so bone challenged, that took a little courage, but I had to find out about this. We were already hearing about osteonecrosis of the jaw from long term use of bisphosphonates, and I had to find out if more extensive bone disease was possible elsewhere in the body from these drugs. The bone sample was sent from Yale to Johns Hopkins. After it was examined, I received some very good and some not so good news. First the good news – the doctors asked my doctors at Yale, “Are you sure that this guy has cancer? We can’t find any.” But of course I do. It has just been tremendously suppressed by the combination treatment. The bad news is that I have the worse case of adynamic bone that they ever saw! I immediately stopped taking the bisphosphonates. That was in the middle of 2005, and six months after stopping the zometa, I absolutely felt the best since even before my diagnosis of myeloma.