The Important Body Scan

This morning I went in for my total body scan to see how the RAI is working.

I went right in, go the whole scan done, the neck scan, and went to wait. They said they wanted a chest picture done, so I went back and had to be put back under the machine to get a picture of my chest. I guess there was a couple of white spots on the total body scan, so they wanted to be sure there was nothing there.

After, I went back & spoke with the resident. The scan shows that the remaining thyroid tissue is taking in the RAI nicely! In 3-4 weeks, the tissue should be completely killed off! I'm so happy that this is working, and I can pretty much get past this!

I will need to be doing blood work every 6 weeks, mostly for my TSH & T4 levels for my medicine, and I'll have to repeat this scan (not the major dose week, just the first dose week) every 9-12 months.

For now, I won't update too much, definitely not until after the wedding. Just on adjustments in medicine & any new information.

The LID

The LID (low iodine diet) is something that needs to be done when taking the RAI (radioiodine) treatments. Basically, you can't eat anything in preparation of the treatments, or during the treatments. The best place to go for information is here, where it explains what you can/can't eat, and you can print off a cookbook!

General Comments

• Remember: LOW IODINE has NOTHING TO DO WITH SODIUM. The diet is a low-iodine diet, NOT a low-sodium diet. Sodium is in most foods. Table salt is sodium chloride, not sodium.
• Sodium in any form is OK, as long as it is not provided as IODIZED salt. NON-IODIZED salt is OK for the diet, as long as it is not sea salt. As noted below, you should avoid any product or ingredient from the sea. That's because sea-based products are high in iodine.
• Also, this is a "low-iodine" diet, NOT a "no-iodine" diet and NOT an "iodine-free" diet. A low-iodine diet reduces iodine consumptionc(on most diets to below 50 micrograms (mcg) of iodine per day (on some diets to below 80-100 mcg per day). The American Thyroid Association recommends that the low-iodine diet include less than 50 mcg of iodine per day. (The Recommended Daily Allowance of iodine is 150 mcg per day for adults. One teaspoon of iodized salt contains 400 mcg of iodine.)
• During your time on the diet, you may freely eat any foods that are low in iodine (up to 5 mcg per serving). There are lots of foods that you can eat. Pages 10 and 11 have lists. However, avoid foods high in iodine (over 20 mcg per serving). Also, many thyroid cancer specialists' guidelines recommend limiting foods that are moderate in iodine (5 to 20 mcg per serving).
• For recipes and a snack list, use ThyCa’s free Low Iodine Cookbook. You can download it free from our web site and print it out.
• You also can adapt your favorite recipes from your own cookbooks to the low-iodine diet. To do this, eliminate ingredients that are high in iodine, or substitute ingredients from the list of foods and ingredients that are fine on the diet.
• If you follow other dietary guidelines due to allergies, diabetes, other medical conditions, or other reasons, you can adapt your recipes and meal plans. Use the cookbook's lists and tips.

Avoid These Foods and Additives

Avoid the following foods, starting when instructed by your physician before your radioactive iodine test or treatment. Continue as instructed until after your radioactive iodine treatment (often for about 24 hours after). These foods and ingredients are high in iodine (over 20 mcg per serving, according to researchers' presentations at our conferences).

• Iodized salt and sea salt and any foods containing iodized salt or sea salt. Non-iodized salt may be used. For example, Kosher salt is okay unless the label says that it is iodized or sea salt.The reason to avoid sea salt is that all products from the ocean tend to be high in iodine.You can usually find plain, non-iodized salt next to the iodized salt at your grocer. Read the label. (One teaspoon of iodized salt has 400 mcg of iodine.)
• Seafood and sea products (fish, shellfish, seaweed, seaweed tablets, kelp). These are all very high in iodine and should be avoided.
• Foods or products that contain these sea-based additives: carrageenan, agar-agar, algin, alginate, nori (these food additives are seaweed by-products).
• Dairy products (milk, cheese, cream, yogurt, butter, ice cream, powdered dairy creamers, whey, casein, other dairy products). Note: Nondairy creamers often have iodine-containing ingredients, too. A study published in 2004 in the Journal of Clinical Endocrinology and Metabolism reported on tests of 18 brands of milk in the Boston, Massachusetts area. It reported that 250 ml of milk (about 8 ounces, or 1 cup, or 16 Tablespoons) contained from 88 to 168 micrograms of iodine and averaged 115 mcg. It noted that sources of iodine in milk include iodine in cattle feed, the products containing iodine used to clean teats and udders, and a small amount from equipment cleaning products. (Some low-iodine diets allow very small amounts of milk or other dairy, if not listed in the first three ingredients on a label. There is no dairy in any of the recipes in this cookbook.)
• Egg yolks or whole eggs or foods containing whole eggs. Egg whites are acceptable, because they contain little or no iodine. (Some low- iodine diets allow foods with very small amounts of eggs, if not listed in the first three ingredients on a label. The recipes in this cookbook use only egg whites.)
• Commercial bakery products. Avoid bread products that contain iodine/iodate dough conditioners (usually small bakery breads are safe; it’s best to bake it yourself or substitute with Matzos). If you read labels closely, you may also be able to find crackers made only with flour and water. While a few commercial bakery products have tested low in iodine, manufacturing processes can change over time. The study published in the Journal of Clinical Endocrinology and Metabolism in 2004 reported that the iodine content of single slices of 20 different brands of bread ranged from 2.2 mcg to 587 mcg.
• Red Dye #3. However, Red Dye #40 is OK. We suggest that you avoid red, orange, or brown processed food, pills, and capsules. Many red, red-orange, and brown food dyes contain iodine and should be avoided. The problem with food colors is specific to Red Dye FD&C #3 (erythrosine) ONLY. However, the problem is that some food labels do not specify which red dyes are used. Better safe than sorry. For medications, the best source is the Physician’s Desk Reference (PDR), which clearly states the ingredients. For example, Rocaltrol in the 0.5 mcg size is NOT good for the diet because it contains FD&C Red Dye #3. However, Rocaltrol 0.25 mcg does not and is safe for the diet (you can take two of them to get to the 0.5 mcg dose). Please always check with your physician.
• Most Chocolate (for its milk content). Cocoa powder and some dark chocolates are permitted. Check the label for other ingredients not allowed on the low-iodine diet. The ThyCa cookbook has recipes with permitted chocolate.
• Some Molasses. Avoid if sulfured or blackstrap, which is concentrated and has a bitter taste. It's okay to use the milder, fairly sweet unsulfured molasses usually used in cooking and that is the type most often available in grocery stores in the USA. Sulfur is not related to iodine. However, it's a term used on molasses labels. Some diets don't make distinctions between kinds of molasses and say to avoid all molasses.
• Soybeans and most soy products (soy sauce, soy milk, tofu). However, soy oil and soy lecithin are both okay.
• Some beans besides soybeans.The National Institutes of Health diet says to avoid these beans: red kidney beans, lima beans, navy beans, pinto beans, and cowpeas. Other diets do not limit beans.
• Some diets diets say to avoid rhubarb and potato skins. The inside of the potato is fine.
• Iodine-Containing Vitamins, and Food Supplements. Also products containing iodate or iodide. Check the label and ingredients and discontinue completely if iodine is included. Most vitamins with minerals contain iodine.
• If you are taking a Medication that contains iodine, check with your physician.

Limit the Amounts of these Foods

Some diets from thyroid cancer specialists and researchers recommend limiting the daily intake of foods that are moderate in iodine: 5 to 20 mcg per serving.

• Fresh meats. Up to 5 ounces per day of fresh meats such as chicken, beef, pork, lamb, and veal are fine on the low-iodine diet. (Up to 6 ounces, according to one of the researchers, who noted that meat contains 25-130 mcg of iodine per pound.) Whole cuts tend to contain less iodine than do ground meats. Also, check the package label on meats, including whole turkeys, turkey breasts, turkey cutlets, chicken, and all pork products. Many food makers inject broths into turkey or chicken or pork. The label may not indicate whether the broth contains iodized salt. If you are not sure, go to your local butcher for fresh turkey, pork, or chicken.
• Grains, cereals. Up to 4 servings per day of grains, cereals, pasta, and breads without iodine-containing ingredients are fine on this diet. The iodine content depends on the iodine content of the region where the grain was grown. Homemade baked goods and cereals are best on this diet. If you use processed foods, read the labels carefully to avoid iodine-containing ingredients. Also, remember that labels are not always accurate or up to date.
• Rices. Like grains, rices vary in the amount of iodine depending on the region where grown, so rice should be eaten only in limited amounts. Some low-iodine diets recommend avoiding rice. Basmati rice has been mentioned as the best for the diet.

RAI: 100mCi

Today I got my "big" dose of 100mCi. I'm feeling really good, and kind of looking forward to being able to relax and be alone for a few days. At this point, I'm still feeling normal, just having to be taking all of my precautions, which I'll share next time. I'll update in the next couple days on how I'm feeling!

First Total Body Scan

Today I had my first total body (TB) scan. It was actually kind of scary. The scariest body scan I've ever had.

The machine was kind of like a CAT scan machine, just part of a machine. I laid on a really small metal platform that had a thin pad and a pillow on it. The scanner part was flat, and could be moved up and down. It was placed about an inch away from my face. I'm not claustrophobic, but I was nervous when it was over my face. The TB scan took about 15 minutes, and went down my whole body (duhh). After the machine was past my face, she moved it down so it was closer to my body. After that, there was a 5 minute scan of my face. She moved the scanner up, and then towards my face. It was scary because she didn't move it up enough, so I had to ask her to move it.

After that, we waited about 10 minutes or so for the doctor to come back and talk to us. I don't think he's a doctor yet, but he knows what he's doing (I hope). They couldn't see any cancer cells floating around anywhere, they only saw what was left of the thyroid after the surgery. That is basically just tissues/cells left around the vocal chord area. I'll be doing the real RAI treatment starting on Monday. I had the option of not doing it, but it seems best to just kill it off. And, I've been preparing for it, so we might as well do it and see what happens. I'll be getting 100mci of RAI (this past Monday, I received 5mci for the diagnosis).

Next Thursday, I'll go back for another TB Scan next Thursday. Hopefully it won't be as scary...

So, I got to get those wonderful TSH injections again on Saturday and Sunday. Luckily, after that, I can wait until April/May 2011 when I have to do the scan again. Yup, I get to do all of this (LID diet, TSH injections, take 5mci of RAI and the scan) every year for a few years.

I'll post again on Monday, after I drink some more RAI!

Treatment is Underway!

I am currently beginning my treatment to cure the cancer for good! A week and a half ago, I met with the nuclear medicine department at Strong and after that, I began my LID (Low Iodine Diet). Honestly, that has been about the worst part of the whole treatment! I'm finding it hard to eat. I get sick of things easily, and I'm not really trying to hard to find anything. We'll hopefully be getting more low salt items and things I can use to make the next 2 weeks bearable.

This weekend I started my TSH injections. They. Were. Horrible! I hate that I still have to have them done two more times! It hurt really bad, and the second one bled and bruised! Both arms still hurt when they're touched. Hopefully this week that goes away, just in time for two more. So, I lied. THIS is the worst part of the entire thing! The most painful shot I've ever gotten!

Today I finally got the first dose of the RAI! It was kind of scary. I got there, and had blood work done to check the TSH levels and to make sure I'm not preggo (which I'm not). We waited around a while, then I finally got to go back and drink it out of this metal container, which has a vial in it. I drank out of this plastic tube, and the resident filled it with water using a syringe twice. It basically tasted like water, but you could taste the plastic from the tube. Gross.

Wednesday, I go back for the body scan. Then they'll tell us what the dosage will be next week, when I have to go back for injections and drinking more RAI.

I can't wait to be done. 12 more days and everything will be back to normal.

Cancer Awareness Items

I've been going around the internets looking for some cool Thyroid Cancer awareness things to wear and show off. The best I've found so far is Choose Hope. They have stuff for all types of cancers (some things they have more items than others), and a lot of different things. They have magnets, pins, hats, apparel, and bracelets among everything else. My personal favorite section is the Cancer Sucks section, because, well, it just does! They also ship pretty quickly, even if you do the cheapest shipping!

Hope and Dreams also has a section on different cancers, and there's a large selection of Thyroid Cancer awareness shirts and stuff!

Go out there and get the awareness out!

RAI Consultation

I had a consultation for the RAI Treatment, and I'm able to do it this month! I have a whole schedule, and it will be about two weeks long.

The first week, I'll start on Saturday, July 17th. I'll get a TSH injection that day, a TSH injection on Sunday July 18th, and then on Monday I have blood work and take the first small dose of RAI, and on Wednesday I'll have more blood work and a full body scan to diagnose if and where there is any left over cancer cells.  If that shows up that there is no cells anywhere, we won't have to do week two. I can be around people as usual, but I'll be treating it as a trial run for week two.

If we do week two, it will be the same schedule. Saturday, July 24th I'll have a TSH injection, Sunday, July 25th I'll have the second TSH injection, then Monday I'll have the higher dose of RAI. That next Thursday I'll go back for a body scan. Week two, I can't be around people between Monday and Saturday. The doctor said that on Saturday, July 31, I can go back to normal! Just in time for wedding madness!

Luckily, I don't have to be extremely strict with the low iodine diet, but I will follow it as close as I can, so it all works the best. I will have to be careful on week two, cleaning up a lot, and being no closer than 15 feet to anyone. I'll pretty much hang out in my room all week, so hopefully it won't be too bad.

I'm so happy this is working out to be done before the wedding, and hopefully this treatment will (and should) be the only treatment needed to take care of this!

Steri-Strip Free!

I finally got the steri-strips off the incision! It looks great, & I kept getting comments on how good the surgeon did. Tomorrow I have a consultation about the RAI, so I'll post again after I get back from that appointment.

RAI Consultation

On Friday I have a consultation with the radiology department of Strong Memorial Hospital. There I'll go and talk to someone about what to expect, get all the info I need, and when I'll be starting the treatment. Right now, I have a feeling it's going to be on the 19th, but I don't really know for sure. I'll know a lot more after Friday's appointment.

Information on Radioactive Iodine

Because the cancer was in the lymph nodes, I have to take the radioactive iodine treatment. As of right now, if I have a job, I'll be doing the treatment after the wedding and honeymoon. Here's some information I found online about it. I have not talked to a medical specialist about what will happen in my case, or what I will be doing.

From the Mayo Clinic:

Radioactive iodine treatment uses large doses of a form of iodine that's radioactive. Radioactive iodine treatment is often used after thyroidectomy to kill any remaining healthy thyroid tissue, as well as microscopic areas of thyroid cancer that weren't removed during surgery. Radioactive iodine treatment may also be used to treat thyroid cancer that recurs after treatment or that spreads to other areas of the body.

Radioactive iodine treatment comes as a capsule or liquid that you swallow. The radioactive iodine is taken up primarily by thyroid cells and thyroid cancer cells, so there's a low risk of harming other cells in your body.

Side effects may include:

• Nausea
• Dry mouth
• Dry eyes
• Altered sense of taste or smell
• Pain where thyroid cancer cells have spread, such as the neck or chest

Most of the radioactive iodine leaves your body in your urine in the first few days after treatment. During that time you'll need to take precautions to protect other people from the radiation. For instance, you may be asked to temporarily avoid close contact with other people, especially children and pregnant women.

From Endocrine Web:
Thyroid cells are unique in that they have the cellular mechanism to absorb iodine. The iodine is used by thyroid cells to make thyroid hormone. No other cell in the body can absorb or concentrate iodine. Physicians can take advantage of this fact and give radioactive iodine to patients with thyroid cancer. There are several types of radioactive iodine, with one type being toxic to cells. Papillary cancer cells absorb iodine and therefore they can be targeted for death by giving the toxic isotope (I-131). Once again, not everybody with papillary thyroid cancer needs this therapy, but those with larger tumors, spread to lymph nodes or other areas, tumors which appear aggressive microscopically, and older patients may benefit from this therapy. This is extremely individualized and no recommendations are being made here or elsewhere on this web site...too many variables are involved. But, this is an extremely effective type of "chemotherapy" will little or no potential down-sides (no hair loss, nausea, weight loss, etc.).

Uptake is enhanced by high TSH levels; thus patients should be off of thyroid replacement and on a low iodine diet for at least one to two weeks prior to therapy. It is usually given 6 weeks post surgery (this is variable) can be repeated every 6 months if necessary (within certain dose limits).


There's also some information WebMD, which tells you what to expect:

Radioactive iodine, given in a liquid form, is absorbed and concentrated by the thyroid gland. The treatment destroys thyroid tissue but does not harm other tissue in the body.

See an illustration of the thyroid gland .

While radiation can cause thyroid cancer, treatment of hyperthyroidism with radioactive iodine does not increase your chances of getting thyroid cancer.

What To Expect After Treatment

Within days, the radioactive iodine passes out of your body in your urine.

To avoid exposing other people to radioactivity, it is important to do the following for the first 5 days after your treatment:

• Drink plenty of fluids.
• Avoid spending a lot of time around others, especially children and pregnant women.
• Do not sit next to someone in a motor vehicle for more than 1 hour.
• Avoid kissing or sexual intercourse.
• Sleep in your own room.
• Use separate towels, washcloths, and sheets. Wash these and your personal clothing separately for 1 week.

To further reduce the chance of exposing other people to radioactivity:

• Wash your hands with soap and lots of water each time you use the toilet.
• Keep the toilet very clean. Men should urinate sitting down to avoid splashing. Also, flush the toilet 2 or 3 times after each use.
• Rinse the bathroom sink and tub thoroughly after using them.
• Use separate (or disposable) eating utensils for the first few days and wash them separately.

Why It Is Done

Radioactive iodine may be used to treat hyperthyroidism in people who have noncancerous (benign) thyroid nodules that make too much thyroid hormone.

Radioactive iodine is also used if you have your thyroid removed (thyroidectomy) because of thyroid cancer. Radioactive iodine therapy destroys any remaining thyroid tissue or cancer cells that were not removed during surgery.

How Well It Works

In almost all cases, your thyroid hormone levels will return to normal or below normal after radioactive iodine treatment. This may take 8 to 12 weeks or longer. If your thyroid hormone level does not go down after 6 months, you may need another dose of radioactive iodine.

If you have thyroid cancer and you are treated with radioactive iodine, it may take from several weeks to many months for your body to get rid of any remaining cancer cells.

Your thyroid nodule is unlikely to grow after being treated with radioactive iodine.

Risks

The risks from radioactive iodine treatment include:

• Metallic taste in your mouth.
• Dry mouth.
• Sore throat.
• Neck pain. Radioactive iodine treatment can make your neck swell up or hurt.
• Nausea or vomiting, which is usually mild.
• Constipation or diarrhea.
• Fatigue.
• Unusually low (hypothyroidism) or unusually high (hyperthyroidism) thyroid levels