After RAI, where should I go?

Finnegan1
Finnegan1 Member Posts: 21
edited March 2014 in Thyroid Cancer #1
I have an RAI treatment coming up soon, and while visiting with the Dr. she said that I would have to use a seperate bathroom than my husband for several days. I told her we only have one bathroom, and was there any other option. Her reply was."Oh- well I guess you'll figure out something."
then she left the room.
Does Anyone have an idea of exactly what it is I am supposed to figure out? Am new here as of 3 days ago. Thanks for your response.

Comments

  • forme
    forme Member Posts: 1,161 Member
    #2
    Wow
    Hi,
    Wow, hard to believe that a Dr could be so lame. I think you should talk to the nuclear med Dr before your RAI. I know that in the past and also in some current situations, they will have you stay in the hosp. for a few days. Depends also on the dose you receive. Some people have posted that they wanted to stay at a hotel. Not a good idea. No real way to contain the radioactivity. Please do talk to the nuclear med Dr and or department BEFORE your RAI. They will be able to better guide you. Keep us posted to your outcome. Thinking of you..

    Oh, forgot to say welcome to the site
  • kitandkat
    kitandkat Member Posts: 11
    #3
    forme said:

    Wow
    Hi,
    Wow, hard to believe that a Dr could be so lame. I think you should talk to the nuclear med Dr before your RAI. I know that in the past and also in some current situations, they will have you stay in the hosp. for a few days. Depends also on the dose you receive. Some people have posted that they wanted to stay at a hotel. Not a good idea. No real way to contain the radioactivity. Please do talk to the nuclear med Dr and or department BEFORE your RAI. They will be able to better guide you. Keep us posted to your outcome. Thinking of you..

    Oh, forgot to say welcome to the site

    I agree, that was pretty bad
    I agree, that was pretty bad for her to just leave the room like that! Anyway when I had mine I was told I could keep doing a normal routine as long as I used paper plates and washed my sheets separately. I'm not sure if cleaning the toilet would work though. I would definitely talk to the nuclear medicine doctor if possible... he/she probably knows more about the radiation restrictions to begin with.
  • Finnegan1
    Finnegan1 Member Posts: 21
    #4
    forme said:

    Wow
    Hi,
    Wow, hard to believe that a Dr could be so lame. I think you should talk to the nuclear med Dr before your RAI. I know that in the past and also in some current situations, they will have you stay in the hosp. for a few days. Depends also on the dose you receive. Some people have posted that they wanted to stay at a hotel. Not a good idea. No real way to contain the radioactivity. Please do talk to the nuclear med Dr and or department BEFORE your RAI. They will be able to better guide you. Keep us posted to your outcome. Thinking of you..

    Oh, forgot to say welcome to the site

    forme and kitandkat
    Thank you guys so much for responding! I wasn't sure anyone would and I appreciate you both. Also thank you for the advice. I will definitely talk to the Nuclear Med. Dr. and find out what I'm supposed to do. I am embarassed to say I didn't even think of that. I assumed they would call me or . . .anyway. I guess we all learn somehow. And thanks for the welcome. I don't have any children , but my husband and I are volunteers with an animal rescue organization. I guess I don't have to say that our fostering has been postponed indefinitely. I am really glad I found this web-site. everything is really confusing right now, and topping it off, the insurance I'm on won't cover the thyrogen, so am on the no meds, and fresh foods diet.
    I did find a really nice cookbook on thyca though! Thanks again.
  • nasher
    nasher Member Posts: 505 Member
    #5
    well real hard to say. the
    well real hard to say. the thing is everything you touch for the first few days will get some contamination on it.

    You dont want to expose your loved ones to radiation that they dont need to receive.

    you do know he will need to sleep in another room and stay at a distance from you for the first few days.

    some exposure will happen no matter how much you try to keep the contamination separated.

    if he has to use the same bathroom you could try those toilet seat covers and gloves.. be sure to flush twice or more.

    if you have spair cash there is also the option of renting a port potty so he could use it during the first few days.

    if he gets exposed to too much of your RAI dose he might develop thyroid cancer himself and you don't want that.

    another option is he could use a hotel room again depending on how much spair cash you have.

    after about a week most of the excess RAI will be gone and you wont have to worry as much about the separate bathroom
  • Finnegan1
    Finnegan1 Member Posts: 21
    #6
    nasher said:

    well real hard to say. the
    well real hard to say. the thing is everything you touch for the first few days will get some contamination on it.

    You dont want to expose your loved ones to radiation that they dont need to receive.

    you do know he will need to sleep in another room and stay at a distance from you for the first few days.

    some exposure will happen no matter how much you try to keep the contamination separated.

    if he has to use the same bathroom you could try those toilet seat covers and gloves.. be sure to flush twice or more.

    if you have spair cash there is also the option of renting a port potty so he could use it during the first few days.

    if he gets exposed to too much of your RAI dose he might develop thyroid cancer himself and you don't want that.

    another option is he could use a hotel room again depending on how much spair cash you have.

    after about a week most of the excess RAI will be gone and you wont have to worry as much about the separate bathroom

    nasher
    Thanks for that. I wouldn't have thought of him going to a hotel. We probably can't afford it, but maybe he can stay with a friend for a few days instead. Will I be weak or sick at all from it? (the RAI)
  • nasher
    nasher Member Posts: 505 Member
    #7
    Finnegan1 said:

    nasher
    Thanks for that. I wouldn't have thought of him going to a hotel. We probably can't afford it, but maybe he can stay with a friend for a few days instead. Will I be weak or sick at all from it? (the RAI)

    all depends on how much you
    all depends on how much you get and how bad it effects you.

    you may be sick you may not be.

    myself i felt horable for a few days and weak after that for a few weeks slowly getting better but still weaker after months in my opinion
  • Finnegan1
    Finnegan1 Member Posts: 21
    #8
    nasher said:

    all depends on how much you
    all depends on how much you get and how bad it effects you.

    you may be sick you may not be.

    myself i felt horable for a few days and weak after that for a few weeks slowly getting better but still weaker after months in my opinion

    nasher
    quick question; I have been on the LID for 6 days now, and starting yesterday noticed a light-headedness, kind of dizzy feeling. It seems to have increased today a bit. What is this and does everyone experience the same I wonder? Still using recipes from thyca cookbook, so not like I'm starving myself. Just curious and a little concerned. Thanks!
  • Seri
    Seri Member Posts: 14
    #9
    Finnegan1 said:

    nasher
    quick question; I have been on the LID for 6 days now, and starting yesterday noticed a light-headedness, kind of dizzy feeling. It seems to have increased today a bit. What is this and does everyone experience the same I wonder? Still using recipes from thyca cookbook, so not like I'm starving myself. Just curious and a little concerned. Thanks!

    Calcium
    Hi Finnegan,

    I felt really weird after a week on the diet too. Are you taking a calcium supplement? If you aren't, you might want to let your dr know how you are feeling and ask your dr if you should be taking one.
  • nasher
    nasher Member Posts: 505 Member
    #10
    Finnegan1 said:

    nasher
    quick question; I have been on the LID for 6 days now, and starting yesterday noticed a light-headedness, kind of dizzy feeling. It seems to have increased today a bit. What is this and does everyone experience the same I wonder? Still using recipes from thyca cookbook, so not like I'm starving myself. Just curious and a little concerned. Thanks!

    yes i would have them check
    yes i would have them check your calcium levels.. at the time i was on calcium supliments and such cause I had a low calcium level.. forgot about that to be honest.

    are you drinking enough fluids (water)
  • Finnegan1
    Finnegan1 Member Posts: 21
    #11
    nasher said:

    yes i would have them check
    yes i would have them check your calcium levels.. at the time i was on calcium supliments and such cause I had a low calcium level.. forgot about that to be honest.

    are you drinking enough fluids (water)

    thanks guys
    sorry I'm so late getting back. What a rough week. Yes, drinking plenty of fluids, but I struggle to remember even the littlest things. Guess I shoulda seen that coming. And I'm waiting to hear from the scheduler, they are still not giving me a date for the scan yet, and I am nearing the end of the LID period. Will I have to stay on it longer? I guess it depends on the date they come up with. I never go anywhere without a cell (when I ever feel like going somewhere!) so I know the Dr.s office is just not getting back to me.
  • forme
    forme Member Posts: 1,161 Member
    #12
    Finnegan1 said:

    thanks guys
    sorry I'm so late getting back. What a rough week. Yes, drinking plenty of fluids, but I struggle to remember even the littlest things. Guess I shoulda seen that coming. And I'm waiting to hear from the scheduler, they are still not giving me a date for the scan yet, and I am nearing the end of the LID period. Will I have to stay on it longer? I guess it depends on the date they come up with. I never go anywhere without a cell (when I ever feel like going somewhere!) so I know the Dr.s office is just not getting back to me.

    Call
    Hi Finnegan1,
    I would call them to get a firm date set.I find it hard to believe that they would have you start the LID but not have any dates set for you. Maybe the nuc med dept has the info,you could try calling them yourself to get things going. I have my dates set for Nov. They were set for Aug then Sept, but every time they would always confirm with me. I had to keep moving the dates due to having contrast ct's done. Keep calling till you get an answer...
  • kdow
    kdow Member Posts: 1
    #13
    Same Concern
    Hi -
    I am facing the same thing. I just had my two thyroid surgeries in August 2010. They thought it was all benign until the pathologist studied the tissue after the thyroid cyst was analyzed. And now my incision is infected. I'm attempting to conceal it, but I'm self conscious. Fashion tips welcome.

    RAI is next. I have a 2 year old and a 5 year old...so, where am I supposed to go? I was told of a place called the Hope Lodge. They have them in many cities. The American Cancer Society offers free housing while you are all radioactive, but a caregiver is required to stay there with you. How does that work? What's the quarantine benefit if someone is there with you getting all radiated?

    At any rate, call your local American Cancer Society and ask if they have anything like this in your city. I am going to call them back and ask more details. It might be a good option. Otherwise, a friend might have a vacant condo for sale that I can move into for a week.

    Hope that helps? I'll let you know where I end up. I am not ruling out a hotel...
  • nasher
    nasher Member Posts: 505 Member
    #14
    kdow said:

    Same Concern
    Hi -
    I am facing the same thing. I just had my two thyroid surgeries in August 2010. They thought it was all benign until the pathologist studied the tissue after the thyroid cyst was analyzed. And now my incision is infected. I'm attempting to conceal it, but I'm self conscious. Fashion tips welcome.

    RAI is next. I have a 2 year old and a 5 year old...so, where am I supposed to go? I was told of a place called the Hope Lodge. They have them in many cities. The American Cancer Society offers free housing while you are all radioactive, but a caregiver is required to stay there with you. How does that work? What's the quarantine benefit if someone is there with you getting all radiated?

    At any rate, call your local American Cancer Society and ask if they have anything like this in your city. I am going to call them back and ask more details. It might be a good option. Otherwise, a friend might have a vacant condo for sale that I can move into for a week.

    Hope that helps? I'll let you know where I end up. I am not ruling out a hotel...

    @ Kdow
    1) please dont go to
    @ Kdow

    1) please dont go to a hotel. that can easly contaminate alot of things as well as sheets are washed together and who knows who will get the room next.

    as for a caregiver staying with you. that is actualy not to bad of a thing realize the first few days you will be really radioactive and the radioactive Iodine not absorbed by whats left of a thyroid goes out throug your sweat as well as your baldder. so yea you will be hot and spreading radiation everywhere you go (in small amounts). ok so back to tha caregiver they will probaly be in the next room and just come up to tend to your needs (give you food and such) so they will spend mabey 30 min a day NEAR you and that will minimize the exposure.

    i also wouldnt recomend a vacant condo realize again anything you sweat out may leave a contaminated area for 58+ days. (7 1/2 lifes of I-131)

    as for a scar for males
    1) if dressing up were a tie
    2) turtlenecks

    for women
    1) a scarf
    2) turtleneck.

    also do EVERYTHING they tell you to do if they tell you to use sunblock on the scar once healed then do. if they tell you to massage the scar then do. basicaly there are lots of ways once healed to minimize how a scar looks as far as infection keep it clean however they tell you and apply whatever antibiotic oitnment or whatever they tell you to as you are supposed to.

    Generic there are 3 ways to minimize radiation exposure to other people they are Time,Distance, and Shielding

    TIME
    1) minimize time they are around you as much as posible
    2) as time goes on 8 days = 1 halflife so every 8 days the exposure risk is 1/2 what it was 8 days before
    3) when someone needs to get close to you do a quick in and out if posible minimizing time close

    DISTANCE
    1) Radiation looses its potency the farther from you so every extra foot they can be away from you is less exposure to them

    SHIELDING
    1) like for x-rays they put a lead sheet on your body and they stand behind a shielded wall anything and everything has a factor that they reduce radiation by so a house wall will reduce (by some probably not much) the radiation exposure so staying in a difrent room helps.

    hope i didnt scare anyone just tyring to get some hints down that might help
  • nasher
    nasher Member Posts: 505 Member
    #15
    Finnegan1 said:

    thanks guys
    sorry I'm so late getting back. What a rough week. Yes, drinking plenty of fluids, but I struggle to remember even the littlest things. Guess I shoulda seen that coming. And I'm waiting to hear from the scheduler, they are still not giving me a date for the scan yet, and I am nearing the end of the LID period. Will I have to stay on it longer? I guess it depends on the date they come up with. I never go anywhere without a cell (when I ever feel like going somewhere!) so I know the Dr.s office is just not getting back to me.

    yes do call and find out
    yes do call and find out when they want you there.

    they will want you to be on the LID till at least they give you the radiation (or longer depending on the hospital) but eithor way every day further out your treatment dose is means another day on the LID.

    they should have had the date setup prior to them putting you on the LID

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