March 1 - The treatment plan

Today we headed to Siteman Cancer Center. We got there 10 minutes early and it still took until 35 minutes after our apppt time until we got back to a room. First we saw the nurse, then the resident and then the thyroid specialist along with the other two. They each explained things a bit different, but here is what we got from them.

1. Today they took blood to get TSH, thyroglobulin and calcium levels. To start the treatment she needs to have a TSH level of 30. After the treatment the goal is to have it at 0 - .01, which is lower than the average persons level of .03 - 5%. The lower the level, the lower likelyhood of cancer recurrence. They think the amount of Cytomel that she is on should get her to the 30 she needs to proceed with treatment.

2. We will stop her low-dose thyroid medicine on Monday, March 7. Side effects of being off thyroid medicine are: fatigue, weight gain, nausia. She will be off the medicine for the two weeks prior to the Radioactive Iodine treatment. Barnes does not require that she eat a low-iodine diet. St. John's did. National Cancer Institute recommends the diet. Barnes says they have no evidence to support that being on the diet aides the treatment in any way. I think we'll at least try to do it as best we can. Boy is it hard to find milk that is dairy free and soy free. 1 kind. Coconut milk is all I could find. I bought it, so we're going to try it.

3. On Monday, March 21 she will get blood levels taken and she has to have the TSH of 30 to proceed with the test the next day.

4. Tuesday, March 22 she will go back to Siteman and drink the RAI. It's only 1 teaspoon of a clear, tasteless, odorless liquid that is drank through a straw followed by a glass of water. How does it work?? Thyroid cells collect iodine that enters the body in food. The thyroid gland uses iodine to make thyroid hormone. Thyroid cancer cells also collect iodine. Radioiodine is a type of iodine that is radioactive. The radiation kills both the normal thyroid cells and the thyroid cancer cells. The thyroid cells are not destroyed right away by the radiation. The radioiodine from the treatment will stay in these thyroid cells for 2 to 3 months and work to destroy the cells.

What are side effects of treatment? nausia, vomiting, swelling/pain of salivary glands, dry mouth, loss of taste, eye tearing, sore throat/hoarseness. Drink lots of fluid. No sour or tart liquids or foods.

5. RAI precautions for others -- The first 48 hours are the most important because she will be radioactive, which has the possibility of harming others, though there are no facts showing that it does. Most of the radioiodine not collected by the thyroid cells will be gone during the first day. It leaves the body mostly by urine. It is best she use her own bathroom for the first 2 days and up to 8 days. She has to flush the toilet twice. She has to shower twice a day washing from head to toe and have good hand washing. Sheets and clothes should be washed together after the first 48 hours. The same after the next 6 days. No sleeping or being close with any person or pet during the first 2 days, up to the 8 days. Must stay at least an arms length away from anyone for any 2-3 hour period. No long car rides.

6. She will start on the new Synthroid medication the day after treatment. She should start to feel better within a week after going back on thyroid medicine. They say children have an easier time being off the medication...so we'll see.

7. On Friday, March 25 she will have a total body thryroid scan. This will show any remaining cancer left in her body. We will have the scan and then go immediately to the office for the results and continuing treatment plan.

8. I'm going to keep her out of school for the full 8 days just to be cautious, but they said they tell people they can go back to work after the first 2 days.

9. Go back to school!!