Hello fellow Graves patients,
thought I would give some feedback on my experience with Radiation therapy and TED. I elected to have this therapy after consulting with my eye surgeon, the radiation oncologist and my family. We thought I was a good candidate for this treatment for several reasons; I have only had the TED since Oct 2008, so not much scar tissue has developed yet, the TED I have is in the moderate category in terms of severity of symptoms, and level of tissue damage/involvement, and I had no other underlying health problems- I have had normal thyroid tests since Jan 2009. I am still taking methimazole, but gradually dropping the dose with each normal thyroid test- I should be off of it before the end of this year.
The dose of radiation I received was maybe half of the lowest dose a cancer patient might receive- still there are risks involved, but I thought the potential benefits outweighed the risks. Besides the external and internal swelling with my eyes, the double vision was getting to be very scary, and certainly started to hinder my quality of life.
The first thing that was done was to fit me for the mask that limits your movement while you are receiving the treatment. That was very freaky, as it is very form fitting including your eye area, so it is even hard to blink as your eye lashes bump into it. The worst part of the experience was the cat scan and other films they had to take to get the proper measurements to do the treatment. In as much as it took about 1/2 hour for 3 different days to do them- a long time to have that mask on- it is tight. But I felt it was more important to get accurate measurements, so I just breathed through it (belive me child birth and labor is much worse) and thought happy thoughts. But the actual treatments took less than 10 minutes- really only 1 minute of radiation per each side- and then you were done. Absolutely painless, but you could smell a funny odor when the beam was activated. I had 10 treatments, over 2 weeks, daily. The second week I started to feel a little wiped out about an hour after treatment. The third week after the final dose, I did feel very tired and not much energy, sort of like a flu was coming on. The eye swelling did become worse-but we had discussed these side effects, and I knew that they would be temporary. Other side effects were increased tearing, and sort of a sunburn like rash where the beam had been aimed at- at the outside corner of my eye. Today it is 10 days since my last treatment, and I feel like those side effects are going away, and my double vision has improved quite a bit. I am getting more rest and don’t feel as tired. The swelling is going down too. One of the reasons I elected to do this was to delay eye surgery, or avoid it if possible. I go back to my eye surgeon in 3 weeks, so we’ll see how things go. I did not take any prednisone while doing radiation, I did take it prior to doing it, though. Some Dr’s prescribe prednisone while doing treament- I’m glad mine didn’t, as the side effects from the prednisone would make the radiation treatments very hard to endure, I think. Well I hope this first hand account will help someone who has to make a decision about treatment options. I will keep you posted as to how this continues to play out. My best wishes for health and happiness, Susan (shadowrider)
” title=”Very Happy” /> All the best Susan
