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Oh my ! This instruction sheet on rai makes it sound freaky.

MarinMark
Posts: 139
Joined: Aug 2011

http://www.thyca.org/rai.htm

Is it this bad ? Did you get put in the hospital ?

amorriso
Posts: 186
Joined: Oct 2010

The RAI is not that bad. Ask anyone who's been through it - you'll get through it just fine. Ask you hospital what their protocal is for hospital stays, and what they allow you to bring in or not.

Where I am it was required that I stay in the hospital, but I could bring in my laptop to entertain myself. The diet is as it is - two weeks and its over.

Yes you need to be careful with contact around people for awhile - again - ask the people giving you the RAI to explain things. I had to stay off work for a bit longer simply because I am a teacher and did not want to risk exposing the kids to radiation.

Stop watching videos etc - you'll only scare yourself. - Listen to the facts. Everyone is differentwhen it comes to dealing with the RAI but the people here on this forum are the best to ask questions - and we will give you honest answers.

MarinMark
Posts: 139
Joined: Aug 2011

Great reply. Here in Marin they don't hospitalize people for RAI. Should I request to be hospitalized ? What was your 131 dosage ?

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Hey Mark,

I'm scheduled for RAI on 10/13. I don't know the dose yet but where I live (Maryland) they changed the regulations and they no longer hospitalize patients receiving RAI. I know it all sounds scary. I will be at home and secluded in an in-law appt. I found the thyca.org webpage very helpful. I also purchased a book (mentioned on that page) called "Thyroid Cancer, A Guide for Patients". What a great book!!!! Amazon has if for $35.

Side note: I'm a nurse and used to take care of patients (in the hospital) that received RAI. Although we carried a dosimeter, I was still exposed. I specifically remember emptying the urine collection containers in the bathroom... WHO WOULD HAVE GUESSED that exposure is probably what contributed to my cancer. My best friend who also worked on the same unit w/me was diagnosed w/pappilary thyroid cancer last year.

When do you get your treatment? I'm schedule to stop my meds on 9/23, labs on 10/6 and RAI on 10/13 and WBS on 10/20. I could have RAI on 10/10 but my partner is traveling and we have two dogs and don't want them exposed.

nasher
Posts: 507
Joined: Apr 2010

ok here we go

myself I got 175mCi of RAI

for the hospital I went to the protocol was anything over 150mCi was hospitalized.

once they hospitalize you there is a completely different and more stringent release from hospitalization levels.

the best i can answer is talk to the radiology department to see if they know about how much they plan or are planning right now to give you as well as are they planning to hospitalize you.... remember its a special room and such they put you in they can not just throw you into ANY hospital bed.

yes the diet sucks... and its only 2 weeks + the time they want after RAI for me it was 4 hours after RAI i could have anything on the hospital menu.

as for work I was given 2 weeks off or medical after RAI and then they gave me another few days free as well since they didn't want to be around me.

the only thing I have come up with in the year past is that if i need to do it again I will get something like a thyroid shield (can purchase online for like $50) or something to protect others from the area we are expecting higher levels from.

people who carry dosimitry like myself and CLRRN the people around us will normally want us away for a few more days cause we get radiation normally on a daily basis. I worked Nuclear Power and CLRRN is a nurse.

for myself I sat there an calculated the exposure i was giving myself and the control levels they give us as nuclear workers... within the first hour I would have been past the levels for a month and within 2 i would have been past the year level of control... the levels fall off quickly though

at work one of the places i went do now and then has some of the incredibly sensitive detectors they go off with about 80 bananas passing them... that one i set off for about 120 days so I had to call them before I approached it.

was also told don't go to an airport for about 60 days after RAI.

yes it can be freaky yes it can be scarey. remember its that they have to give you every side effect no matter how common or uncommon...

if you got that for every medicine you are on you would totally freak out

an example do you take aspirin for anything
if they had to give you the same warnings for all meds when they gave you aspirin they would have to tell you...
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Gastrointestinal

Endoscopically identifiable gastric mucosal lesions occur in most patients who receive a single dose of aspirin. Clinically evident gastrointestinal bleeding has been reported in as many as 3% of treated elderly patients. Anorectal ulceration and rectal stenosis have been reported in patients who abuse aspirin-containing rectal suppositories. One case-controlled study has suggested that an association between aspirin (and other NSAID) consumption and appendicitis may exist.

The risk of developing dyspeptic events (i.e., epigastric pain, heartburn, nausea, ulcers) is low in rheumatic patients with no prior gastrointestinal symptoms who receive low-dose (less than 650 mg/day) aspirin therapy.

Gastrointestinal side effects have included epigastric distress (in as many as 83% of patients treated with regular aspirin), abdominal discomfort or pain, endoscopically identifiable gastric mucosal lesions, nausea, and vomiting. More serious gastrointestinal effects include hemorrhage, peptic ulcers, perforation, small bowel enteropathy, and esophageal ulcerations.
Renal

The mechanism of an aspirin-induced decrease in renal function may be related to inhibition of renal prostaglandin synthesis with consequent decreases in renal blood flow. Vasodilating renal prostaglandins may be particularly important in patients who exhibit arterial underfilling (i.e. heart failure, cirrhosis). The administration of high doses of NSAIDs to such patients has produced acute renal failure in rare instances.

Renal side effects have included reduction in glomerular filtration rate (particularly in patients who are sodium restricted or who exhibit diminished effective arterial blood volume, such as patients with advanced heart failure or cirrhosis), interstitial nephritis, papillary necrosis, elevations in serum creatinine, elevations in blood urea nitrogen, proteinuria, hematuria, and renal failure.
Hematologic

Hematologic side effects have included increased blood fibrinolytic activity. In addition, hypoprothrombinemia, thrombocytopenia, thrombocyturia, megaloblastic anemia, and pancytopenia have been reported rarely. Aplastic anemia and eosinophilia have also been reported.
Hypersensitivity

Hypersensitivity side effects have included bronchospasm, rhinitis, conjunctivitis, urticaria, angioedema, and anaphylaxis. Approximately 10% to 30% of asthmatics are aspirin-sensitive (with the clinical triad of aspirin sensitivity, bronchial asthma, and nasal polyps).

The mechanism of aspirin-induced hypersensitivity may be related to an up-regulation of the 5-lipoxygenase pathway of arachidonic acid metabolism with a resulting increase in the products of 5-lipoxygenase (such as leukotrienes).
Dermatologic

Dermatologic side effects have included Stevens-Johnson syndrome and a lichenoid eruption. In addition, isolated cases of unilateral aquagenic wrinkling of the palms and papuloerythroderma have been associated with aspirin therapy.
Hepatic

Hepatic side effects have included hepatotoxicity and cholestatic hepatitis.
Oncologic

Oncologic side effects have included reports of pancreatic cancer. Several epidemiologic studies have suggested that chronic aspirin use may decrease the risk of large bowel neoplasms. However, other studies have not found such a beneficial effect.
Metabolic

Metabolic side effects have included dehydration and hyperkalemia. Respiratory alkalosis and metabolic acidosis, particularly during salicylate toxicity, have been reported. A case of hypoglycemia has been reported in a patient on hemodialysis. Salicylates have also been reported to displace triiodothyronine (T3) and thyroxine (T4) from protein binding sites. The initial effect is an increase in serum free T4 concentrations.
Cardiovascular

A 29-year-old female with a history of migraine developed chest pain, tachycardia and orthopnea following aspirin consumption at doses of 1500 mg per day for several days. After discontinuation of aspirin therapy, the patient's symptoms promptly resolved. The patient consented to a pharmacological challenge test which once again triggered the symptoms.

Cardiovascular side effects have included salicylate-induced variant angina, ventricular ectopy, conduction abnormalities, and hypotension, particularly during salicylate toxicity. In addition, at least one case of fluid retention simulating acute congestive heart failure has been reported during aspirin therapy. Antiplatelet therapy has also been associated with acute deterioration of intracerebral hemorrhage.
Nervous system

Central nervous system side effects have included agitation, cerebral edema, coma, confusion, dizziness, headache, cranial hemorrhage, lethargy and seizures. Tinnitus and subjective hearing loss (or both) may occur. Some investigators have reported that modest doses may result in decreased frequency selectivity and may therefore impair hearing performance, particularly in the setting of background noise.

Some investigators have suggested that tinnitus may be a less reliable indicator of salicylate toxicity than previously believed. Patients with high frequency hearing loss may have difficulty perceiving tinnitus. In a study of rheumatoid arthritis patients, those with tinnitus had no greater salicylate levels than those without tinnitus. Elderly patients may be less likely to perceive tinnitus than younger patients.
Other

Reye's syndrome typically involves vomiting, neurologic dysfunction, and hepatic dysfunction during or shortly after an acute viral infection.

Other side effects have included Reye's syndrome with aspirin use in children with an acute viral illness. Reye's syndrome has also been reported even more rarely in adults.
Musculoskeletal

Musculoskeletal side effects have included rhabdomyolysis.
Respiratory

Respiratory side effects have included hyperpnea, pulmonary edema, and tachypnea.

Aspirin desensitization has been used to decrease disease activity and reduce the need for systemic corticosteroids in patients with aspirin-exacerbated respiratory disease.
Endocrine

Endocrine side effects have included hypoglycemia (which has been reported in children) and hyperglycemia.
Ocular

Ocular side effects have included cases of localized periorbital edema.
---

ok ok i know sounds bad... here is another common one

Tylenol

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General

In general, acetaminophen is well-tolerated when administered in therapeutic doses.
Hepatic

Alcoholic patients may develop hepatotoxicity after even modest doses of acetaminophen. In healthy patients, approximately 15 grams of acetaminophen is necessary to deplete liver glutathione stores by 70% in a 70 kg person. However, hepatotoxicity has been reported following smaller doses. Glutathione concentrations may be repleted by the antidote N-acetylcysteine. One case report has suggested that hypothermia may also be beneficial in decreasing liver damage during overdose.

In a recent retrospective study of 306 patients admitted for acetaminophen overdose, 6.9% had severe liver injury but all recovered. None of the 306 patients died.

A 19-year-old female developed hepatotoxicity, reactive plasmacytosis and agranulocytosis followed by a leukemoid reaction after acute acetaminophen toxicity.

Hepatic side effects including severe and sometimes fatal dose dependent hepatitis have been reported in alcoholic patients. Hepatotoxicity has been increased during fasting. Several cases of hepatotoxicity from chronic acetaminophen therapy at therapeutic doses have also been reported despite a lack of risk factors for toxicity.
Gastrointestinal

Gastrointestinal side effects have included nausea (34%) and vomiting (15%). Cases of acute pancreatitis have been reported rarely.

One study has suggested that acetaminophen may precipitate acute biliary pain and cholestasis. The mechanism of this effect may be related to inhibition of prostaglandin and alterations in the regulation of the sphincter of Oddi.
Renal

Renal side effects are rare and have included acute renal failure, acute tubular necrosis, and interstitial nephritis. Adverse renal effects are most often observed after overdose, after chronic abuse (often with multiple analgesics), or in association with acetaminophen-related hepatotoxicity.

Acute tubular necrosis usually occurs in conjunction with liver failure, but has been observed as an isolated finding in rare cases. A possible increase in the risk of renal cell carcinoma has been associated with chronic acetaminophen use as well.

One case-control study of patients with end-stage renal disease suggested that long term consumption of acetaminophen may significantly increase the risk of end-stage renal disease particularly in patients taking more than two pills per day.

However, a recent cohort study of analgesia use of initially healthy men concluded that moderate use of analgesics including acetaminophen was not associated with increased risk of renal disease.
Hypersensitivity

Hypersensitivity side effects including anaphylaxis and fixed drug eruptions have been reported rarely in association with acetaminophen use.
Hematologic

Hematologic side effects including rare cases of thrombocytopenia associated with acetaminophen have been reported. Acute thrombocytopenia has also been reported as having been caused by sensitivity to acetaminophen glucuronide, the major metabolite of acetaminophen. Methemoglobinemia with resulting cyanosis has been observed in the setting of acute overdose.
Dermatologic

Dermatologic side effects including erythematous skin rashes associated with acetaminophen have been reported, but are rare. Acetaminophen associated bullous erythema and purpura fulminans have been reported. One case of toxic epidermal necrolysis associated with acetaminophen administered to a pediatric patient has been reported. Dermatologic side effects associated with IV acetaminophen have included infusion site pain and peripheral edema.
Respiratory

Respiratory side effects have included dyspnea and a case of acetaminophen-induced eosinophilic pneumonia.
Cardiovascular

Two cases hypotension have been reported following the administration of acetaminophen. Both patients experienced significant decreases in blood pressure. One of the two patients required pressor agents to maintain adequate mean arterial pressures. Neither episode was associated with symptoms of anaphylaxis. Neither patient was rechallenged after resolution of the initial episode.

Cardiovascular side effects including hypertension and hypotension have been reported following the administration of acetaminophen.
Metabolic

In the case of metabolic acidosis, causality is uncertain as more than one drug was ingested. The case of metabolic acidosis followed the ingestion of 75 grams of acetaminophen, 1.95 grams of aspirin, and a small amount of a liquid household cleaner. The patient also had a history of seizures which the authors reported may have contributed to an increased lactate level indicative of metabolic acidosis.

Metabolic side effects have included hypokalemia. Metabolic side effects including metabolic acidosis have been reported following a massive overdose of acetaminophen.
Nervous system

Nervous system side effects associated with IV acetaminophen have included headache (10%), insomnia (7%), and fatigue.
Musculoskeletal

Musculoskeletal side effects associated with acetaminophen IV have included muscle spasms and trismus.
Psychiatric

Psychiatric side effects associated with acetaminophen IV have included anxiety.
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yes with radiation they will tell you everything about it so it sounds like reading one of the two examples above

MarinMark
Posts: 139
Joined: Aug 2011

I'm stopping aspirin and tylenol now. Thank you. 175 is a pretty high dose... why did you get that dose ? Isn't 100 average ? Wish there were a poll regarding rai and thyrogen and everyone chimes in. In California insurance won't pay for rai hospitalizations

Heard that 1/5 people get nausea and altered taste and salivary gland swelling and dry mouth from rai. And if you get thyrogen, good chance of nausea and headache. I hate nausea.

Diet looked fine to me. I like egg whites.

CherylMike
Posts: 118
Joined: Oct 2009

I had 103 dose of radiation. My doctor prescribed anti-nausea medicine ahead of the treatment, just in case. I had to use it (waited until I threw up once - should have taken it when I started to feel qwesy). After taking the medicine, I was just fine! My taste was altered - could only taste sweets - not good for the waistline - but came back fairly quickly. I had dry mouth really bad (even though I sucked on lemons and drank a ton of water during treatment). That too has mostly come back over time. I stayed at home - I set up a mattress on my bathroom floor - I had night sweats badly and did not want that on the mattress. My 25 year old daughter brought my premade meals (low iodine) to me on paper plates and left them at the bedroom door. I had disposable gloves I used when touching things. I also flushed 3 times after I used the restroom and took two showers daily. When out of isolation, I washed my clothes separately from my kids and took my trash out to the outside garabage. I got a couple of paperbacks to read, which I also tossed when finished. I sucked on fresh cut lemons or sourhead candies (minimum every hour) and drank a glass of water every hour. It really was not that bad. I just got a little stir crazy. (I also really dislike sour candies and lemons now!) I am on the low iodine diet now as I am getting ready for my year out scan. Have been on it for over three weeks. I use the grill alot and make red sauce pasta dishes (you can buy no salt tomatoe sauces and no salt diced tomatoes at the grocery). I also like sauted fresh veggies (in no salt butter and add non-iodized salt and garlic -check the label for no salt). Dark chocolate usually has no sodium in it as do frosted mini-wheats cereal. Dole frozen strawberry bars are no sodium. Just a few things. In the long run, this is such a short period of time. Good luck!

MarinMark
Posts: 139
Joined: Aug 2011

My doc tells me the majority of people have no side effects from thyrogen or rai. Are the people here who had no bad effects just keeping quiet or is my doctor just falsely reassuring me ?

What anti-nausea drug did you use and how much of it ? How long after the rai did you get sick ?

Dole doesn't have sodium... okay, but is it iodide free ?

103 dose ? Why not an even 100 ?

CherylMike
Posts: 118
Joined: Oct 2009

I would not consider myself having "bad effects" from the RAI. Everything was short lived. It was something I needed to do in order to kill these cancer cells. It was a very good trade off. I used a prescribed anti-nausea medicine (it was almost a year ago so I do not remember the name of the medicine, but it was a supository). After I took it I was fine. The nausea was controlled with the medicine. I only vomited once because I did not take the medicine once I started feeling quesy, I waited. If you are worried, I would ask your doc if he could prescribe something for you to keep on hand if you start feeling bad. I got sick the same day I received the RAI. Yes, the Dole strawberry fruit bars do not have iodide. It is not listed in the ingredients. You may want to go to the ThyCa website where they have a cookbook and a description of the low iodine diet. It lists foods to avoid, ok foods . . . I have no idea why my dose was 103. I am assuming it was based on the pathology of my tumors? I know there is a maximum dosage of RAI (I believe 500) that an individual can receive in a lifetime. That may have contributed to my dosage amount. Hope this helps!

MarinMark
Posts: 139
Joined: Aug 2011

I've heard of 500-1200 as lifetime maximums. How does one find out for certain that Dole strawberry has no iodide. I have called companies and they say that they don't test for iodide in their popsicles.

Did your tumor spread to any lymph nodes ? Was it on both sides of your thyroid gland ?

sunnyaz
Posts: 582
Joined: Oct 2010

I heard that strawberries in any form are high in iodine. I was eating a strawberry fruit Popsicle when I was reading the foods on line that have lots of iodine. I spit it out and let my daughter have them. I don't remember seeing that one on the thca site but I googled it and found that it was one of the natural iodine foods. I avoided them, but remember this is a low iodine diet, not a no iodine diet.

The odd numbers for the RAI are because they can't get an exact dose. My first was 83 mCi's and my second was 178 mCi's. I know it is weird but it's not an exact science when they make your dose. They try to get as close as possible but it's not really possible to do that. My doses were in four to six different pills.

I never experienced nausea. I still believe that if you suck down too much water after taking the pills that can make you sick.

CherylMike
Posts: 118
Joined: Oct 2009

"Foods That Are Fine to Eat on the Low-Iodine Diet

The low-iodine diet consists mostly of fresh, low-fat, low-calorie foods. Because of this, following this diet greatly reduces the tendency to gain weight while hypothyroid.

The following foods and ingredients are fine to eat. You do not need to limit the quantity, except as noted.

Fresh fruits and fruit juices, except rhubarb, maraschino cherries (if they contain Red Dye #3), and fruit cocktail with maraschino cherries."

Thank you for your post Sunny. I was going by what the Thyca website had posted. As you can see, fresh fruits are listed under the foods that are fine to eat. I am glad you did your research and will also donate these fruit bars to my kids. I have no idea why I got nausea. I do believe it was common enough that the nuclear doctor prescribed meds beforehand. (I did not drink huge amounts of water, just what the doctor suggested - I live in Gilbert,AZ and normally drink multiple glasses of water throughout the day for hydration). The nausea for me was not the "projectile, can not stop heaving" variety (my husband died of head and neck and I am very familiar with that). It was milder than the flu and was completely controlled with the medicine. No big deal. Take care and thank you again for the information on the strawberries. Hopefully I will not have to be on this diet much longer (already 3.5 weeks, I am not yet hypothyroid enough for the scan).

MarinMark
Posts: 139
Joined: Aug 2011

How about squeezing fresh Meyer lemons into water and adding Equal ? It is delicious and has no calories.

CherylMike
Posts: 118
Joined: Oct 2009

Sunny said that she read that strawberries are a natural source of iodine. I had gone by the thyca website that said fresh fruits were fine. I did not research this well enough, but have given the fruit bars to my kids. I had tumors in both sides of my thyroid. They both were well encapsulated and had not spread to any surrounding tissue at that time. Hopefully they got it all and this upcoming scan will confirm that. Because of my age (almost 51) and the fact that I have the Braf gene, my doctors will need to "keep an eye on me" a little more than usual. That is ok. Sorry for the misinformation on the strawberries. I think I will not post anymore "food ok to eat" in the future. I feel very irresponsible. Take care.

sunnyaz
Posts: 582
Joined: Oct 2010

Don't feel bad, I thought strawberries were okay too. Then as I was eating a Dole Strawberry fruit and juice bar one day while on the LID, I just decided to look up strawberries on line. Thyca.org never said anything about strawberries being high in iodine. It was just a fluke that I looked it up because they are red and I had my suspicions. I was surprised to find out that they are one of the highest in iodine. Luckily I didn't eat a lot of it before I gave it to my daughter and told her she could have the whole box. Boy, was she excited.

MarkMarin, I too love making lemon-aid with water, natural lemon juice (I buy it in the glass bottle) and then I add packets of stevia. It's not too sweet and not too tangy. I found the right mix for me and it really tastes good and quenches my thirst. It also keeps you salivating:)

Blessings,
Julie-SunnyAZ

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