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was anybody's RAI like thisI

grateful1
Posts: 81
Joined: Jun 2010

I HAVE AN INOPERABLE THYROID TUMOR--THO THEY TRIED FOR HRS TO REMOVE IT IN APRIL.
MY ENDIN. SENT ME TO THE HEAD OF NUCLEAR MED FOR RAI--AFTER I STAYED ON THE LOW IODINE DIET FOR TWO WEEKS==THIS WAS JUST ABOUT SIX WEEKS AGO. FOR MONTHS THE DRS. COULDN'T MAKE UP THEIR MINDS WHAT TO DO WITH ME.
WHEN I ARRIVED FOR THE RAI THE TOP DOC DECIDED NOT TO DO IT--HE SAID IT PROBABLY WUDN'T HELP AND MY LEFT SIDE WHERE THE MALIGNANT TUMOR IS THE WORST HE HAD COME ACROSS ALL YR. I WAS BUMMED OUT BY THIS.
THEN ABOUT A MONTH AGO MY ENDIN CALLED ME OR ANSWERED MY CALL AND SAID HE WOULD SEND ME TO A TOP CANCER HOSPITAL IN NYC. I WENT. THEY STARTED ME ON A LOW IODINE DIET FOR A WEEK/ THEY SAID THERE IS NOTHING TO LOSE. THEY ARE GOING TO TRY TO SHRINK THE WHOLE TUMOR. I WILL GO TO THE HOSPITAL FOR INJECTS MON, TUES, WEDS, THURS, FRI AND SAT TO DETERMINE THE DOSAGE HE SAID. THIS WILL BE EXPENSIVE FOR ME AS I HAVE A MUSCLE DISORDER AND CAN'T TRAVEL IN ALL THOSE DAYS IN THE ROW. SO WE WILL RENT A HOTEL ROOM.I CAT BE NEAR MY HUSBAND FOR TWO DAYS--I AM SCARED OF HARMONG HIM.

THEN I COME BACK THE NEXT MONDAY FOR TWO MORE SHOTS MON AND TUES==AND THEN I GET THE IODINE ON WEDNESDAY. THURSDAY EVENING I MAY HAVE A REGULAR MEAL
DID ANYBODY HAVE THIS MUCH TUMOR SHRUNK==THEY SAID MINE IS FOUR SOMETHING.
NATURAALLY I WANT TO GET MY HOPES UP==I HAVE TWO TEEN DAUGHTERS WHO NEED ME. IT'S AN AGGRESSIVE CANCER THE DOCS SAY.

THEN ON AUG 23 I GET A SCAN.

HAS ANYBODY HAD GREAT LUCK WITH THE RAI

ALSO FYI I JUST READ AN ARTICLE IN LIFE EXTENSION NAMING A LOT OF SUPPLEMENTS TO TAKE SO THE RADIATION DOESN'T HARM YOU. DID YOU TAKE SUPPLEMENTS BEFORE AND DURING AND AFTERWARDS.

IRONICALLY I GOT THIS CANCER BECUZ I WAS IRRADIATED FOR AN ENLARGED THYMUS AS AN INFANT.

alapah's picture
alapah
Posts: 271
Joined: Oct 2009

and it seemed to do a lot of good though I still have some residual disease. RAI has a harder time effectively reaching and killing cells in lymph nodes or lungs, for example. but it does work well for most. I didn't take any supplements but that may help. Probably a good idea to talk about what you intend to take with your docs to ensure they are ok. The only thing I remember stocking up on was lemon drops/sour things to help with salivary flow.

About going to a hotel though, could your husband and pets do that instead of you??? That is, can you stay at your home and have him stay away? Or can you stay as an inpatient for the first day or so? It's not a good idea to do a hotel stay because you can't wash your clothes and linens yourself and you would expose hotel staff unknowingly to the radiation - and what if a pregnant woman happened to be sleeping in the next room? I do know how stressful that can all be - staying isolated, etc. It was for me. I realize it's a difficult thing. Just wondering if you might have an option.

grateful1
Posts: 81
Joined: Jun 2010

thanks for your response and advice. the hospital gave a list of places to stay at. I will be there nine days with my husband and a helper to cook lid. they said there were only two days i couldn't be near people. no my house has other people in it. and since i Am disAbled one wAY OR Another someone would have to be there to cook and shop for me.

i got a suite with a wall and a separate bath--so that person will never be near me. I am also going to tell the hotel staff I am going to dispose of the sheets. I won't keep the bedspread on.i don't wzant to harm anyone else. i would rATHER PAY FOR THE SHEETS AND TOWELS. I WILL PUT THEM IN A GARBAGE BAG AND PAY FOR THEM AND DISPOSE OF THEM MYSELF. I aM AFRAID FOR MY HUSBAND TO BE WITH ME--IT IS HE I WOULD HURT. I THINK I WILL PUT FOOD IN THE BEDROOM Part before i get the iodine aND STAY TOTALLY ISOLATED WITH THE DOOR CLOSED UNTIL THE TIME THEY GAVE ME IS UP.. THEY TOLD ME HAve the people leave my food six feet away.

these hotels have a lot of people stay there for aftercare--and i even thought i might be walking in to a room where someone who had iodine treatment stayed. i think the sheets and towels i will just deep six--and i will take paper plates and plastic utensils for me--so i contaminate nothing. i will use paper towels--not hotel linens or i will dispose of them and i will throw away anything i touch. thanks for bringing up this important point. i will clean up but i am terrified i will harm my husband now who is staying with me. maybe i should get another room for him that day or two. luckily they say--only two days. thanks so much for bringing this up

alapah's picture
alapah
Posts: 271
Joined: Oct 2009

it might be good for peace of mind for both of you if he had a room for say the first two nights to sleep separately. You could still maybe talk on the phone between rooms whenever you needed to ask for help or just for the company of his voice and to talk. Maybe even a set of walkie talkies! I know you'll do OK. It'll only be a short time. You can do it!

grateful1
Posts: 81
Joined: Jun 2010

THIS IS A GOOD IDEA. I AM ONLY A DANGER MY DOC TOLD ME TWO DAYS--THE WED I GET THE TREATMENT AND THEN THE NEXT THURSDAY--WHEN I MAY EAT A REGULAR DINNER THAT NIGHT. NO I CAN;T AFFORD IT--WE ARE GOING WAY OVER ON THIS CANCER TREATMENT--BUT I THINK IT IS A NECESSITY. I WILL GET AN EXTRA ROOM THOSE TWO NITES--AND THEN WHEN I COME HOME THE NEXT DAY I AM STAYING SECLUDED IN MY OWN LITTLE DEN. THANK YOU SO MUCH--YOU WERE A BIG HELP. I WOULD LOVE TO HEAR HOW YOU ARE DOING.

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