so in the first blog of this series, i talked about the RAI diet- and how you have to wait a while before you can have that cheeseburger in paradise. the second blog was somewhat boring- a technical mash up of why the diet is important, what RAI actually does for you, and some tips and procedure advice. this final blog ( for now anyway, i seem to return to this topic on a somewhat frequent basis) is just a retelling of my experiences with the treatment dose of RAI.
in my family, whenever we tell a story we always start with " and so i got there." i will begin there. i talked my endocrinologist into letting me have my RAI treatment dose at a hospital near me. that was so i could be at home for my isolation, and not in the hospital. so i got there( to the hospital near me) and met with the radiologist who would be taking care of me during my adventures with radioactive iodine. the radiologist started off reading from the pathology report- explaining to me why i needed such a large dose of the RAI. the short version is that i had : unencapsulated tumors, diffuse infiltration into my neck bed and lymph node area, stage three,etc. i also found out that i had cancer in two of my four parathyroids. when he was telling me all of this, i actually had to refrain from turning my head to look behind me. surely he was talking to someone else! my husband was with me and i highly recommend taking your spouse, best friend, neighbor, or whoever with you when you are to be receiving news like this. at times i just spaced out, but my husband filled in the blanks for me later on.
i had my surgery on May 19th, 2010. i had a thyrogen injection on july 19th, along with a chest x-ray and a full CBC ( blood work). on july 20th, i had another injection of thyrogen,. on wednesday, drum roll here, i had my treatment dose of RAI. thursday i got to rest- ha,ha. and then on friday, more blood work. the following week, i had to come back to the hospital for a full body scan. nothing too interesting about the thyrogen injection on the 19th and 20th, but the day i got my RAI was a day that i will never forget.
i was apprised again of the "rules of being radioactive." i was sitting in a treatment room, alone, when the radiology technician came in. at least i think that it was her. whoever it was had on a full haz-mat suit- from head to toe, although it looked a little bit like she was planning a walk on the moon instead of handing me my RAI dose. what she placed on a little table in front of me was in a very heavy lead box about the size of some canned goods. inside, the walls were about three inches thick all the way around. there was a glass vial inside that contained a capsule, about the size of an extra strength tylenol, that was filled with some white powder. there was also a small bottle of water. she told me, in a muffled voice, that i was to open up the box, AFTER SHE LEFT THE ROOM, remove the capsule from the glass vial, and swallow it as quickly as possible. she said that it needed to go down fast- not roll around in my mouth. i somehow managed to get it down without choking. before the technician left the room, she told me that from the time i swallowed the capsule, i had exactly one hour in which to drive home and get upstairs in isolation.
in order to deal with the situation, i immediately thought of the show " mission impossible". the theme song was going around in my head. i had accepted the mission and i had to move quickly to complete my task, before myself and everyone around me, crashed and burned. i will now say that about 30 minutes into the trip home, my throat got sore and i felt like someone was pressing on my throat where my thyroid had been. later on, after i had sprinted upstairs to my isolation room, i did feel hot to the touch, and i had some nausea. this is what made me think of the "burning love" song. i would have liked an anti-emetic, but a cold wash cloth and sipping on some ginger ale worked pretty well. even though i had snacks upstairs in a dorm refrigerator, i did not feel like eating. i did drink sour lemonade and lots and lots of water, though.
so, i made it to friday. i drove myself to the hospital and prepared to make my way to the lab for another blood test. i could find my way to the radiology department blindfolded, but i had never been to the lab. i was told to keep at least 6 feet between me and others, and to not get anywhere near someone who might possibly be pregnant. as i was making my way down the hall, i happened upon a man from housekeeping who was buffing the floors. i had to yell, which made it worse i think, " i am radioactive, stay back from me, but could you please tell me if i am heading in the right direction to get to the lab?". needless to say, he certainly kept his distance. in fact he was probably thinking, " man, this lady needs directions to the psych ward instead of the lab." he did tell me that i was on the correct path and to turn left two doors down the hall way.
which brings up another interesting story. this one deals with the fact that i was not to get anywhere near someone of childbearing age. the med tech at the lab, who was holding a huge needle and heading straight for my poor over-stuck arm, was of child bearing age. i was going to try to be subtle, but the situation called for action. i shouted, " are you pregnant?" the med tech immediately smoothed down her scrub top, and said, " well no! my oldest child is four years old." i know that she was thinking " i wonder if this top makes me look fat?" believe me, you do not want a person wielding a large needle to be pissed off at you! i told her quickly that i was radioactive, and was told to ask this before my blood test. she looked relieved, and actually thanked me for asking- eventually.
i had nausea for four days. i could go downstairs after my husband left for work, but i had to wear disposable gloves and sit on a piece of plastic. i put a plastic, disposable mattress cover on the bed upstairs. i bought some cheap sheets and a couple of towels that were discarded after i " had done my time in isolation". i also discarded the clothes that i had been wearing, along with magazines and paperback books that i had been reading. all my plates, cups, utensils had to be discarded. i did choose the ones that were made from sugar cane or whatever. my husband would come home, fix dinner, put it on the stairs and run! actually, he sat in the dining room where i could see him. we could talk that way and that was actually nice. after a few days of this, however, i felt like the crazy woman in those Victorian novels- you know, the one who gets locked up in the attic? i was lonely, and i really, really wanted a hug from my husband! of course, that was not possible. besides, one of us " glowing" was enough.
which brings me to my full body scan, which was done on July 28th. it was an open scanner, thank goodness, and they scanned me slowly from head to toe. i felt like i was holding my breath the whole time which was not possible, as the scan lasted about 45 minutes. when they were finished, the technicians said, " wow, your neck lit up like a Christmas tree!". ha- ha- ha. that did not put me in the holiday spirit, you might say. but then i tried imagining that the RAI had light sabers, and that there was a fierce battle going on in my neck. i preferred to think that the jedi RAI fighters had the advantage over the rogue thyroid cancer cells.
and in fact, that was the case. my final results were as follows: chest x-ray was clear; there was focal uptake in my anterior neck( think Christmas tree), but no evidence of distant metastatic disease in head, chest, abdomen, or pelvis. i had another full body scan in december of that year, with similar results. i did have elevated TGA and TG for the next three and one-half years, but that is another story for another day.....
Monday, March 26, 2018
" well, i'm hot blooded, check it and see, i got a fever of a hundred and three, i'm hot blooded, hot blooded." hot blooded, by foreigner
this is my second in a series of blogs about radioactive iodine( I-131), the treatment dose. also known to his friends as RAI. one does not really have a fever after receiving RAI, but you perhaps could think of yourself as being " hot blooded". in this blog, i will give some of the facts, information and so forth about RAI. in my third, and last blog on this subject, i will relate my personal experience with that wild and crazy guy.
so, your thyroid cancer ( usually papillary, follicular, or both) has been shown to benefit from a dose of RAI. this depends on the tumor staging. lower risk patients may just have surgery and not the RAI. higher risk patients will most likely get a dose of the RAI. this dose is expressed in millicuries. the usual range of RAI is between 100 and 200 millicuries, as i stated in my last blog. the treatment dose of RAI is usually given between 3 and 6 weeks after surgery.
to get ready for the RAI, you will need to be on the low iodine diet. since you read my last blog, you realize how important this diet is to your treatment success, so you have followed it religiously. another very important part of preparation before RAI is raising your TSH level. why, do you ask? well, it is important that every remaining thyroid cancer cell be awakened and ready to gobble up the RAI. TSH stimulates the thyroid cancer cells to take up the radioactive iodide cells. the low iodine diet and raising the TSH work together to insure that the RAI is effective in killing the remaining thyroid cancer cells. these thyroid cancer cells may be rogue- in different parts of the body already. or they may be just hanging out in the neck area. either way, to prevent recurrence of the disease, it is important to kill them. i liked to think of the RAI as little jedi knights, complete with light sabers. i will expand on this in the next blog, when i talk about my own experience.
there are two different ways to raise the TSH. one is brutal- the patient has to be off thyroid medication for 3 to 6 weeks. this is brutal because most people do not want to be without thyroid medication. ask any hypothyroid patient how they feel without their medication and they will definitely explain the mental fog, fatigue, body aches, etc, associated with a high TSH. there is another way to raise the TSH, thankfully. the TSH can be raised quickly with Thyrogen injections. it is a series of injections given a few days before the RAI is given. both methods are considered equally effective. my doctor recommended the Thyrogen injections for me- i was still working ( up to the actual RAI dose) and it would have been impossible for me to do my job with brain fog. i was very fortunate that my insurance company covered this medication- some do not.
unfortunately for me, i could not get my doctor to prescribe anti-nausea medication prior to me receiving the RAI. some doctors will routinely do this, but my doctor did not. i did have pretty much nausea after receiving the RAI, but i did not actually vomit, thank goodness. the nausea only lasted about a day or so. if you are prone to nausea, as i am, i would recommend at least asking your doctor for some anti-emetics, if they do not routinely prescribe them.
some people stay in the hospital after the RAI is administered. some people go home- as i did. it depends on many factors. who is sharing your home( small children, pregnant women,etc), how your home is constructed- do you have an area, say an upstairs part, that you can be isolated in? the time of isolation varies. your physician will tell you the length of time that you need to be isolated. you will still be on the low iodine diet for a while during RAI and for some period of time after treatment. it takes a while,it could be months, for those little jedi knights to get to all of the thyroid cancer cells.
between 2 and 10 days after the RAI treatment dose, you will have a whole body scan. getting to the hospital for this can be very tricky. you need to stay at least 3 to 6 feet away from people, especially children and pregnant women, for at least 8 days. you also need to keep a safe distance from your pets. most radiation from the RAI,( although radiation detectors at airports,etc, can detect small amounts of radiation for up to three weeks), is gone in about a week. your physician may have specific instructions about the amount of time you need to be isolated. please be sure to follow these instructions. you do not want to expose anyone unnecessarily.
another good tip, which i did not read about until after my RAI, is that it is a very good idea to get a good dental cleaning prior to treatment. the RAI affects the acidity of the saliva, and can also cause dry mouth. dry mouth can lead to dental issues, i.e. tooth decay. it is also recommended that harsh toothpastes and mouth wash be replaced with sensitive toothpastes, or better yet, baking soda. brushing your teeth with baking soda, several times a day, and flossing is very important. the RAI can cause a metallic taste for some, so the frequent brushing with baking soda may help with this issue as well.
i have just mentioned a few basic facts, tips and precautions associated with a treatment dose of RAI. every one's situation is different. your physician may recommend other tips and precautions that would be more helpful for your situation. be sure to have a clear understanding of what you need to do to help keep yourself and others safe during the RAI. a treatment dose of RAI should not be physically painful, but being in isolation is difficult. it is emotionally draining. i wanted a big hug from my husband, but of course that was not possible for a while. i will admit that i was lonely during this time of isolation. i had paperback books and magazines to read ( i disposed of them afterwards) and i could come downstairs and watch TV when my husband was at work. i had to wear disposable gloves and sit on a piece of plastic on the couch. for more of my adventures of RAI story, please stay tuned for the next blog...
so, your thyroid cancer ( usually papillary, follicular, or both) has been shown to benefit from a dose of RAI. this depends on the tumor staging. lower risk patients may just have surgery and not the RAI. higher risk patients will most likely get a dose of the RAI. this dose is expressed in millicuries. the usual range of RAI is between 100 and 200 millicuries, as i stated in my last blog. the treatment dose of RAI is usually given between 3 and 6 weeks after surgery.
to get ready for the RAI, you will need to be on the low iodine diet. since you read my last blog, you realize how important this diet is to your treatment success, so you have followed it religiously. another very important part of preparation before RAI is raising your TSH level. why, do you ask? well, it is important that every remaining thyroid cancer cell be awakened and ready to gobble up the RAI. TSH stimulates the thyroid cancer cells to take up the radioactive iodide cells. the low iodine diet and raising the TSH work together to insure that the RAI is effective in killing the remaining thyroid cancer cells. these thyroid cancer cells may be rogue- in different parts of the body already. or they may be just hanging out in the neck area. either way, to prevent recurrence of the disease, it is important to kill them. i liked to think of the RAI as little jedi knights, complete with light sabers. i will expand on this in the next blog, when i talk about my own experience.
there are two different ways to raise the TSH. one is brutal- the patient has to be off thyroid medication for 3 to 6 weeks. this is brutal because most people do not want to be without thyroid medication. ask any hypothyroid patient how they feel without their medication and they will definitely explain the mental fog, fatigue, body aches, etc, associated with a high TSH. there is another way to raise the TSH, thankfully. the TSH can be raised quickly with Thyrogen injections. it is a series of injections given a few days before the RAI is given. both methods are considered equally effective. my doctor recommended the Thyrogen injections for me- i was still working ( up to the actual RAI dose) and it would have been impossible for me to do my job with brain fog. i was very fortunate that my insurance company covered this medication- some do not.
unfortunately for me, i could not get my doctor to prescribe anti-nausea medication prior to me receiving the RAI. some doctors will routinely do this, but my doctor did not. i did have pretty much nausea after receiving the RAI, but i did not actually vomit, thank goodness. the nausea only lasted about a day or so. if you are prone to nausea, as i am, i would recommend at least asking your doctor for some anti-emetics, if they do not routinely prescribe them.
some people stay in the hospital after the RAI is administered. some people go home- as i did. it depends on many factors. who is sharing your home( small children, pregnant women,etc), how your home is constructed- do you have an area, say an upstairs part, that you can be isolated in? the time of isolation varies. your physician will tell you the length of time that you need to be isolated. you will still be on the low iodine diet for a while during RAI and for some period of time after treatment. it takes a while,it could be months, for those little jedi knights to get to all of the thyroid cancer cells.
between 2 and 10 days after the RAI treatment dose, you will have a whole body scan. getting to the hospital for this can be very tricky. you need to stay at least 3 to 6 feet away from people, especially children and pregnant women, for at least 8 days. you also need to keep a safe distance from your pets. most radiation from the RAI,( although radiation detectors at airports,etc, can detect small amounts of radiation for up to three weeks), is gone in about a week. your physician may have specific instructions about the amount of time you need to be isolated. please be sure to follow these instructions. you do not want to expose anyone unnecessarily.
another good tip, which i did not read about until after my RAI, is that it is a very good idea to get a good dental cleaning prior to treatment. the RAI affects the acidity of the saliva, and can also cause dry mouth. dry mouth can lead to dental issues, i.e. tooth decay. it is also recommended that harsh toothpastes and mouth wash be replaced with sensitive toothpastes, or better yet, baking soda. brushing your teeth with baking soda, several times a day, and flossing is very important. the RAI can cause a metallic taste for some, so the frequent brushing with baking soda may help with this issue as well.
i have just mentioned a few basic facts, tips and precautions associated with a treatment dose of RAI. every one's situation is different. your physician may recommend other tips and precautions that would be more helpful for your situation. be sure to have a clear understanding of what you need to do to help keep yourself and others safe during the RAI. a treatment dose of RAI should not be physically painful, but being in isolation is difficult. it is emotionally draining. i wanted a big hug from my husband, but of course that was not possible for a while. i will admit that i was lonely during this time of isolation. i had paperback books and magazines to read ( i disposed of them afterwards) and i could come downstairs and watch TV when my husband was at work. i had to wear disposable gloves and sit on a piece of plastic on the couch. for more of my adventures of RAI story, please stay tuned for the next blog...
Thursday, March 22, 2018
" i like mine with lettuce and tomato, heinz 57 and french fried potatoes,big kosher pickle, and a cold beer.." now hold on a minute, Jimmy Buffet. if you are getting ready to be on the low iodine diet before your I-131 treatment, your "cheeseburger in paradise" is going to have to wait a while...
it is rare, or maybe i have never written two blogs in two days, but here is a subject that i would like to expand upon: the low iodine diet for patients before a treatment dose of I-131 is given. in my next blog, this will be a short series, i will go over isolation procedures after the treatment dose of I-131. what to expect, how to prepare for it, what to do,etc. but, again in my opinion, the diet is probably the most important part of the treatment. why, do you ask? i will explain, but first i will mention that the thyca website has some excellent information on this subject. here you will find recipes and useful information. i personally purchased an excellent book on the subject. it is called, not surprisingly, " the low iodine diet cookbook" by norene gilletz. the author explains some of the reasons why a low iodine diet is so important. ms. gilletz also has tons of recipes, and they are grouped into breakfast, lunch, dinner, desserts, snacks, and children's menus. the introduction to the book is written by Dr. Kenneth Ain. he explains the importance of reducing iodine in your diet before, during and perhaps for a short time after receiving the I-131 treatment dose. i will try to explain it in my own unique way...
thyroid cells love, love to " eat" iodine. they use it to make thyroid hormone. if you have had surgery for thyroid cancer, and your thyroid is gone to wherever they send bad thyroids to, theoretically you should not have any thyroid cells left in your body. but let us pretend that the thyroid gland is the mother ship. before the mother ship is destroyed, it sent out escape pods ( little bits of thyroid cancer cells) to other parts of the body. ( they especially like to go to the lungs and bones). so these rogue thyroid cells are now escaped thyroid cancer cells . even the best surgeon can not possibly get these tiny little guys. the trick is to get the thyroid cancer cells to feed on the radioactive iodine, not the regular iodine in the diet. you starve your body of the regular iodine, and the thyroid cancer cells are attracted to the radioactive iodine like moths to a flame. and you know how that turns out...
if a patient does not follow the low iodine diet , as instructed by their physician, it can cause severe consequences. perhaps there can be a recurrence elsewhere in the body. maybe another treatment of the I-131 would be necessary. when i read in some thyroid cancer forums that some people say, laughingly, that they have cheated on their diet, i want to scream. they have in fact cheated on themselves. the diet is a challenge, to be sure, but it is a drop in the bucket time-wise when compared to the rest of your life.
the diet usually begins two weeks before the treatment dose of I-131 and continues for a week or so after the dose when scans are usually done. the amount of time after the dose of the I-131 is given and scans completed seems to vary. this is usually just a day or two- but check with your physician to be safe. the list to avoid is long, i will admit. i will mention just a few things here. iodized salt and sea salt must be avoided, but non-iodized salt is o.k. dairy products have to be avoided. this puzzled me at first. why? milk from any mammal( that is right- no goats milk allowed, though i am not sure why anyone would want to drink it) has a high concentration of iodine. also, commercial dairies use an antiseptic containing an iodine product to clean the area that is to be milked. so no milk or other dairy products are allowed on the low iodine diet. no chocolate is allowed ( big sad face here) because of the milk content. red colored ( especially red dye #3) in medicines and foods should be avoided. this was an odd one- that is why i mentioned it. i looked up the chemical structure of red dye #3 and found that it contains iodine. mystery solved, i guess. and just a reminder, lipsticks and some other cosmetics contain red dye #3. it would be best to avoid these until after the treatment as well.
the list goes on and on, and that is why a patient needs a detailed list to refer to while on this diet. ms. gilletz recommends not eating out- because you can never be certain what exactly is in your food. and i do not mean that in a bad way, but even well meaning waitstaff and cooks may not realize the importance of sticking to the diet. another thing to omit while on the diet is multivitamins. most multivitamins contain iodine, and it would be safer to omit them for a few weeks. there is a long list of items to avoid in packaged foods. i thought it was safer to just omit them while on the diet. generally, fresh fruits, vegetables and meats are o.k. unless products containing iodine are added to them. another tip: when you see " natural flavorings" on a label, it may include salt. and it would be the iodized salt that you should avoid.
the recipes in " the low iodine cookbook" are really good. i still use some of them, especially the blueberry muffin one. it takes some planning, preparation time and lets face it, some will power to successfully complete the low iodine diet. but it is so worth it. and besides, when you are able to get off the diet, that cheeseburger will probably be the best one that you have ever had.
thyroid cells love, love to " eat" iodine. they use it to make thyroid hormone. if you have had surgery for thyroid cancer, and your thyroid is gone to wherever they send bad thyroids to, theoretically you should not have any thyroid cells left in your body. but let us pretend that the thyroid gland is the mother ship. before the mother ship is destroyed, it sent out escape pods ( little bits of thyroid cancer cells) to other parts of the body. ( they especially like to go to the lungs and bones). so these rogue thyroid cells are now escaped thyroid cancer cells . even the best surgeon can not possibly get these tiny little guys. the trick is to get the thyroid cancer cells to feed on the radioactive iodine, not the regular iodine in the diet. you starve your body of the regular iodine, and the thyroid cancer cells are attracted to the radioactive iodine like moths to a flame. and you know how that turns out...
if a patient does not follow the low iodine diet , as instructed by their physician, it can cause severe consequences. perhaps there can be a recurrence elsewhere in the body. maybe another treatment of the I-131 would be necessary. when i read in some thyroid cancer forums that some people say, laughingly, that they have cheated on their diet, i want to scream. they have in fact cheated on themselves. the diet is a challenge, to be sure, but it is a drop in the bucket time-wise when compared to the rest of your life.
the diet usually begins two weeks before the treatment dose of I-131 and continues for a week or so after the dose when scans are usually done. the amount of time after the dose of the I-131 is given and scans completed seems to vary. this is usually just a day or two- but check with your physician to be safe. the list to avoid is long, i will admit. i will mention just a few things here. iodized salt and sea salt must be avoided, but non-iodized salt is o.k. dairy products have to be avoided. this puzzled me at first. why? milk from any mammal( that is right- no goats milk allowed, though i am not sure why anyone would want to drink it) has a high concentration of iodine. also, commercial dairies use an antiseptic containing an iodine product to clean the area that is to be milked. so no milk or other dairy products are allowed on the low iodine diet. no chocolate is allowed ( big sad face here) because of the milk content. red colored ( especially red dye #3) in medicines and foods should be avoided. this was an odd one- that is why i mentioned it. i looked up the chemical structure of red dye #3 and found that it contains iodine. mystery solved, i guess. and just a reminder, lipsticks and some other cosmetics contain red dye #3. it would be best to avoid these until after the treatment as well.
the list goes on and on, and that is why a patient needs a detailed list to refer to while on this diet. ms. gilletz recommends not eating out- because you can never be certain what exactly is in your food. and i do not mean that in a bad way, but even well meaning waitstaff and cooks may not realize the importance of sticking to the diet. another thing to omit while on the diet is multivitamins. most multivitamins contain iodine, and it would be safer to omit them for a few weeks. there is a long list of items to avoid in packaged foods. i thought it was safer to just omit them while on the diet. generally, fresh fruits, vegetables and meats are o.k. unless products containing iodine are added to them. another tip: when you see " natural flavorings" on a label, it may include salt. and it would be the iodized salt that you should avoid.
the recipes in " the low iodine cookbook" are really good. i still use some of them, especially the blueberry muffin one. it takes some planning, preparation time and lets face it, some will power to successfully complete the low iodine diet. but it is so worth it. and besides, when you are able to get off the diet, that cheeseburger will probably be the best one that you have ever had.
Wednesday, March 21, 2018
" how does it feel? how does it feel....like a complete unknown, like a rolling stone, to be on your own, with no direction home, like a rolling stone." Like a rolling stone, by bob dylan
first off, i would like to say that i realize that i have used part of the lyrics of this song, like a rolling stone, by bob dylan before. it is just so appropriate when i write about salivary stones! i did some more research about salivary stones and frankly, there still is not a lot of research on this subject. or the studies are small, and the results inconclusive. yes, it is known that larger doses of the I-131 given after thyroid cancer surgery are more likely to result in salivary stones production. one theory is that scarring caused by the radiation, and resulting inflammation, causes the salivary glands to narrow. some people think that the I-131 also causes reduced saliva production, which causes the saliva to also thicken. so you have thickened saliva and narrow saliva glands. yuck.
i have had both a kidney stone and i still struggle with salivary gland stones- a little over 7 years after my I-131 treatment. i can tell you from experience that both types of stones, while quite different, feel about the same on the pain scale. i should mention that along with salivary stones, I-131 has been associated with mouth dryness, taste alterations, infection, facial nerve involvement, cavities, yeast infections, and abnormal growth of tissue( both benign and cancerous).
salivary stones and salivary gland pain/swelling can occur right after treatment with the I-131. it can come on suddenly and then return months, even years later. my physician recommended that i use sour candies and drink plenty of water ( i did both) after my treatment dose of the I-131. do not confuse a treatment dose of I-131 with a diagnostic one! a diagnostic dose, which has not firmly been linked to salivary issues, is in the single digit milicuries range. a treatment dose starts at about 100 milicuries, and can go as high as 200-250 milicuries. there is a definite link, as i said in the first paragraph, in the occurrence of salivary stones and how much I-131 a patient receives. doses over 200milicuries are generally not recommended. i received 155 milicuries. one source i read said that most of the people who had trouble with salivary gland issues received from 100 to 150 milicuries. it has also been suggested that lowering the dose of the I-131 to the smallest possible effective dose is recommended. now, anyway. i understand that it is a double edge sword, so to speak. i, like many others, had an aggressive type of thyroid cancer and even a brilliant surgeon can not be expected to get all of the thyroid cancer cells. the I-131 is necessary, in my opinion- although there are those patients that refuse treatment- to prevent recurrence of thyroid cancer.
i recommend that patients having salivary stone issues see an ENT ( AKA, an otolaryngologist) for a definitive diagnosis. there are some surgical procedures that can be done, but in my opinion, if you opt for this, make sure that the ENT has done a plethora of these before you have this procedure done. there are nerves and other important stuff in this area, so you do not want to do more damage. what can you do now, at home, to cope with salivary stones/ inflammation/ swelling? here are some things that are recommended: warm compresses, gentle massage, sour lemonade( my favorite- make sure to use plenty of lemon juice and pulp), drink lots and lots of water, and for the pain, the ENT that i saw recommended ibuprofen. of course, some people can not take ibuprofen, due to stomach issues, interactions with other medications,etc, so be sure to check with your doctor or pharmacist ( smiley face here) before taking this medication.
hopefully, more information will be available on the treatment, and hopefully even the prevention of salivary gland pain and salivary stones. thyroid cancer is the fastest growing cancer in the US now. (getting a thyroid cancer diagnosis has TRIPLED over the last three decades according to the american cancer society ). surely, more people are going to have salivary gland issues, so more research hopefully will be conducted into this side effect from the I-131 treatment.
i have had both a kidney stone and i still struggle with salivary gland stones- a little over 7 years after my I-131 treatment. i can tell you from experience that both types of stones, while quite different, feel about the same on the pain scale. i should mention that along with salivary stones, I-131 has been associated with mouth dryness, taste alterations, infection, facial nerve involvement, cavities, yeast infections, and abnormal growth of tissue( both benign and cancerous).
salivary stones and salivary gland pain/swelling can occur right after treatment with the I-131. it can come on suddenly and then return months, even years later. my physician recommended that i use sour candies and drink plenty of water ( i did both) after my treatment dose of the I-131. do not confuse a treatment dose of I-131 with a diagnostic one! a diagnostic dose, which has not firmly been linked to salivary issues, is in the single digit milicuries range. a treatment dose starts at about 100 milicuries, and can go as high as 200-250 milicuries. there is a definite link, as i said in the first paragraph, in the occurrence of salivary stones and how much I-131 a patient receives. doses over 200milicuries are generally not recommended. i received 155 milicuries. one source i read said that most of the people who had trouble with salivary gland issues received from 100 to 150 milicuries. it has also been suggested that lowering the dose of the I-131 to the smallest possible effective dose is recommended. now, anyway. i understand that it is a double edge sword, so to speak. i, like many others, had an aggressive type of thyroid cancer and even a brilliant surgeon can not be expected to get all of the thyroid cancer cells. the I-131 is necessary, in my opinion- although there are those patients that refuse treatment- to prevent recurrence of thyroid cancer.
i recommend that patients having salivary stone issues see an ENT ( AKA, an otolaryngologist) for a definitive diagnosis. there are some surgical procedures that can be done, but in my opinion, if you opt for this, make sure that the ENT has done a plethora of these before you have this procedure done. there are nerves and other important stuff in this area, so you do not want to do more damage. what can you do now, at home, to cope with salivary stones/ inflammation/ swelling? here are some things that are recommended: warm compresses, gentle massage, sour lemonade( my favorite- make sure to use plenty of lemon juice and pulp), drink lots and lots of water, and for the pain, the ENT that i saw recommended ibuprofen. of course, some people can not take ibuprofen, due to stomach issues, interactions with other medications,etc, so be sure to check with your doctor or pharmacist ( smiley face here) before taking this medication.
hopefully, more information will be available on the treatment, and hopefully even the prevention of salivary gland pain and salivary stones. thyroid cancer is the fastest growing cancer in the US now. (getting a thyroid cancer diagnosis has TRIPLED over the last three decades according to the american cancer society ). surely, more people are going to have salivary gland issues, so more research hopefully will be conducted into this side effect from the I-131 treatment.
Wednesday, March 7, 2018
" been beat up, and battered around,...handle me with care; overexposed, commercialized; i've been uptight and made a mess, but i'll clean it up myself, i guess. oh the sweet smell of success, handle me with care. " handle me with care by the traveling wilburys
i just read an amazing article posted by the group, choose hope. the title of the article is " for patients fighting cancer, PTSD, is one more battle." the article went on to say that " new research shows that at least 20% of patients develop PTSD within six months of a cancer diagnosis. this is a rate similar to that of combat veterans."
wow! i personally think, and i do not have any concrete research to back this up, that the percentage is much higher than this. i feel this way, not only because i myself have been struggling with PTSD, but several other cancer patients that i know have had similar problems with PTSD. what we desperately need is a holistic treatment for cancer. we have great surgeons, oncologists, radiologists, and other health care professionals in this country. but we are lacking in mental health services for cancer patients. in canada, there is a more holistic approach to cancer treatment. almost every cancer patient has the option to see a therapist who is trained to deal with PTSD. the article in choose hope said that while this service is available, not every cancer patient in canada chose to accept it. even when holistic care is offered, there is still a stigma associated with needing care for mental health issues.
the above mentioned article, listed several examples of cancer patients with PTSD who have benefited from various treatments for anxiety and depression. one patient is a thyroid cancer patient, who has been dealing with the effects from having her thyroid removed due to cancer, for most of her adult life. so many things tag along with the big C. not only PTSD, but weight gain or loss, being on medications- sometimes for life- and dealing with the side effects of the very medications that keep us alive and functioning, just to mention a few cancer hanger-ons.
for me, the big deal is A N X I E T Y. i am not a depressed person, but boy, oh, boy, am i an anxious one. testing anxiety, and the fear of recurrence are forever in the rear view mirror of my life. unless it is a testing day, i can pretty much control my anxiety during the daylight hours. but come evening and bedtime- well, it is another story. i worry about my family should something happen to me, although i know that they would be fine. and every lump, bump, nauseous feeling or fever takes on tremendous proportions during the night hours. i bet at this point, you are marking me off your " would like to have a pj party at her house" list. i am certainly not perfect, but i am trying to feel more at ease. i know basically what to do to feel better. i am involved with crafts ( beeswax candle making to be exact), i am walking some ( exercise is so good for mental health as well as fitness), and i am on the waiting list for a Tai Chi class. i have been wanting to take Tai Chi for some time, but had been unable to find a class. this one, the one i am on the waiting list for, is offered at our local senior center. yes, i swallowed my pride, age is just a number-ha, and called the center. seems like there are lots of enlightened seniors that have beat me to the punch. but i am on the waiting list, as i said.
one of the other ways to treat PTSD is talk therapy. this has been the hardest subject to broach for me. i know it is not shameful to need some mental health counseling, but i have not been able to make myself do it. there i said it. ( or i wrote it) . out loud. talk therapy is said to be as effective as medication, when it comes to treating depression and anxiety. perhaps i can make some progress on this in the near future. i said i was not perfect. remember?
so, we cancer patients have been beat up and battered around. we really do need to be handled with some care. we are facing so much more than just surgery, chemo, and radiation. it is our life at stake here, and we need not only to take the best care of ourselves that we can, but we need for our families and friends to understand what we are going through and be supportive. think of humpty dumpty. when he fell off that wall, he had many pieces that needed to be put back in place. i know that he did not get reassembled, so to speak, but i do believe that with the right holistic care, cancer patients can put back most of the pieces.
wow! i personally think, and i do not have any concrete research to back this up, that the percentage is much higher than this. i feel this way, not only because i myself have been struggling with PTSD, but several other cancer patients that i know have had similar problems with PTSD. what we desperately need is a holistic treatment for cancer. we have great surgeons, oncologists, radiologists, and other health care professionals in this country. but we are lacking in mental health services for cancer patients. in canada, there is a more holistic approach to cancer treatment. almost every cancer patient has the option to see a therapist who is trained to deal with PTSD. the article in choose hope said that while this service is available, not every cancer patient in canada chose to accept it. even when holistic care is offered, there is still a stigma associated with needing care for mental health issues.
the above mentioned article, listed several examples of cancer patients with PTSD who have benefited from various treatments for anxiety and depression. one patient is a thyroid cancer patient, who has been dealing with the effects from having her thyroid removed due to cancer, for most of her adult life. so many things tag along with the big C. not only PTSD, but weight gain or loss, being on medications- sometimes for life- and dealing with the side effects of the very medications that keep us alive and functioning, just to mention a few cancer hanger-ons.
for me, the big deal is A N X I E T Y. i am not a depressed person, but boy, oh, boy, am i an anxious one. testing anxiety, and the fear of recurrence are forever in the rear view mirror of my life. unless it is a testing day, i can pretty much control my anxiety during the daylight hours. but come evening and bedtime- well, it is another story. i worry about my family should something happen to me, although i know that they would be fine. and every lump, bump, nauseous feeling or fever takes on tremendous proportions during the night hours. i bet at this point, you are marking me off your " would like to have a pj party at her house" list. i am certainly not perfect, but i am trying to feel more at ease. i know basically what to do to feel better. i am involved with crafts ( beeswax candle making to be exact), i am walking some ( exercise is so good for mental health as well as fitness), and i am on the waiting list for a Tai Chi class. i have been wanting to take Tai Chi for some time, but had been unable to find a class. this one, the one i am on the waiting list for, is offered at our local senior center. yes, i swallowed my pride, age is just a number-ha, and called the center. seems like there are lots of enlightened seniors that have beat me to the punch. but i am on the waiting list, as i said.
one of the other ways to treat PTSD is talk therapy. this has been the hardest subject to broach for me. i know it is not shameful to need some mental health counseling, but i have not been able to make myself do it. there i said it. ( or i wrote it) . out loud. talk therapy is said to be as effective as medication, when it comes to treating depression and anxiety. perhaps i can make some progress on this in the near future. i said i was not perfect. remember?
so, we cancer patients have been beat up and battered around. we really do need to be handled with some care. we are facing so much more than just surgery, chemo, and radiation. it is our life at stake here, and we need not only to take the best care of ourselves that we can, but we need for our families and friends to understand what we are going through and be supportive. think of humpty dumpty. when he fell off that wall, he had many pieces that needed to be put back in place. i know that he did not get reassembled, so to speak, but i do believe that with the right holistic care, cancer patients can put back most of the pieces.
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