Friends,
I have not been active on the board in recent years, just checking in from time to time, as after a couple of years, life returned to relatively normal for me, and I moved forward, enjoying life without cancer, and not particularly bothered by annoying limitations like dry mouth and the inability to eat spicy foods.
The good news is that cancer has not recurred (for which I am very grateful), but the bad news, as I approach the 11th anniversary of diagnosis and treatment, is that I am having to deal with osteonecrosis and aspiration issues. I am told that the effects of all that radiation grows worse, not better over time and I have communicated with a few other long term survivors who are dealing with similar issues.
My dentist and my dental oncologist at MDACC had been , for some time, watching a molar of mine that was separating from the bone. It was eventually decided to cut the tooth off at the crown and to let it come out on its own. That occurred, but the skin did not grow back over the hole leading to osteonecrosis. Next strategy was trying drugs to enhance blood flow, which did not work. Then in Feb. Dental onc. performed surgery (sequestrectomy ) to remove dead bone. He found a little more than was visible. I then started a series of hyperbaric oxygen treatments, eventually completing 40 recently. There has been some progress in the growth of tissue, but still not enough to cover the opening to the bone.
During the time that I was completing the HBO treatments, in March, I became very sick with a malaise that I assumed was flu. I had chills and sweats, lost weight and appetite and felt like hell. Now, after a swallow study plus a trip to the pulmonogist and a CT scan it looks like the problem was aspiration, or aspiration pneumonia.
I am scheduled for another sequestrectomy later in the month, which is actually good news, as I was prepared for the surgeon to tell me that he was going to replace the mandible. ( something that could still be in my future if the much simpler sequestrectomy
does not work.) I am working on the aspiration by trying to be more diligent about swallowing exercises and how I swallow. I have heard of others who even had to return to the feeding tube, and I certainly don't want that.
As I mentioned earlier, I have come across a couple of survivors who were treated a year or so before me (before IMRT) who have dealt or are dealing with similar issues. I am curious if there are other out there (Brian Hill?) who are facing the same kinds of issues.
As I like to say, for the last 8 1/2 years or so I have been living the dream: working, traveling, and enjoying life. But the gift that keeps on giving, radiation, has re emerged to cause these health problems. The good part is that I survived. The bad part is that with long term survival, comes these problems left over by the radiation all of those years ago.