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.

Which leads to another question.

I too have noticed posts here and on other OC sites that speak of jaw/bone/swallowing issues from those who are long term survivors who had rads prior to IMRT.

Are there long term survivors who had IMRT rads and are experiencing similar issues?

Danny, sorry to hear you are having issues from rads. Im very glad you are doing HBO to prevent further problems.

Hope you hear from other long term survivors soon.

Hi Danny,

I guess I was a bit ahead of my time...

I was about a year after you and I am having some late effects of radiation also. I had XMRT and started having problems about 4-5 years out. I have lost about 50% of my weight and muscles have atrophied head to toe. I struggle to swallow, speak and breathe. All attributed to radiation damage.

Ed

Christine, thanks for being there, as always.
Uptown...sorry to hear what a tough time you have been having. I have been dealing with very little compared to you.

Danny,

What type of radiation did you have XMRT or IMRT?

I had IMRT and I'm now 7 years out with no "new" problems but you and Ed are further down the road from me. Have others that are now experiencing long term radiation problem had IMRT to your knowledge?

David,
I, like Brian Hill, and 2 other gentlemen that I was referring to, all were treated at MDACC in the early 2000's and all had the regular radiation. In fact I never heard or read the term IMRT, until after my treatment when it was mentioned right here on this board.
Eric, I am, indeed, working with the swallow people. The speech path. wants me to enroll in her "swallowing boot camp", which I plan to do once I heal from the next sequestrectomy.

I really started this thread to hear from long time survivors about what post-radiation problems they are experiencing. While this discussion of nutrition is no doubt interesting to some people, I wish that you had put it on another thread rather than hijacking this one with esoteric diet recipes.

Sorry, I don't mean to be rude, but that is how I feel.

I will fix this a little later today by moving the diet posts to their own thread. It takes more time than I have right this minute to fix something like this. Sorry I didnt catch it sooner!

Hi, Danny,

My husband is 5 years post diagnosis and he had had numerous issues related to radiation: osteoradionecrosis leading to mandibulectomy; aspiration and difficulty swallowing; stiffening neck muscles; recurrent fistula; fatigue; and worsening speech. Like you, he has not had any recurrence but we could not have guessed that these post radiation issues would continue long after initial treatment. Given all that, we live a pretty normal life. He is healthy and active and has some limitations. We have been able to work around the things that get in the way by adjusting his diet, and the expectations of others. We do have to be diligent with aspiration and he sees a pulmonary doc every 6 months. Other than that, life goes on. I have finally allowed myself to relax a little and not get alarmed when he is not at the top of his game that day. However, recurrent infection has made us both wary of any minor changes to his skin which are typically the first sign something isn't right.

Congrats to you for being a long time survivor. I love knowing that you are living life on your terms. I am sorry that you have had to deal with post rad issues so long after your treatment. I wish you the best with your jaw and I hope that you stay healthy following your aspiration pneumonia. The lung doc did say that if my husband gets a fever to contact her and she'll call in an antibiotic pronto. So far, we haven't had to do that.

Best-
Anita