RAI treatment at home

BT Mama

Hi everyone! I am now 3 weeks post thyroidectomy and don't have a endocrynologyst appt until next week. I know from the surgeon that the plan is to do the RAI treatment and I thoroughly am in agreement but was shocked to hear that the treatment is done at home and not in a cancer center or hospital! I am really worried about residual radioactive material in the house when my family comes home after the treatment. i have read that the amount of "isolation time" depends on the dose, but how do they know if any of this stuff is lingering? I have a pregnant daughter-in-law, a 5 yr old granddaughter who visits occasionally, a wonderful hubby and 3 dogs!  I am worried sick about this. I called the endo's office and spoke with the nurse to try to get more definitive info, but was told that the Dr. would fill me in next week but did assert that insurances would not pay for hospital stays for this unless someone was mentally unable to follow directions or they were incontinent.  

Can anyone who has been through this offer any advice?  Thanks in advance!

Carol

alapah

RAI and isolation

If you do any research you'll find that there are widely differring practices when it comes to RAI and isolation. Some hospitals have you stay overnight for 24 or so hrs and then send you home, while others just send you straight home after taking the pill. This sometimes depends on the actual dosage but also just the policy of the place where you get your dose. There is no universal standard - and that can be frustrating and upsettling.

You might want to check out the Thyca.org webpage about RAI precautions (http://www.thyca.org/pap-fol/rai/#after).

I've had RAI twice. Both times I had an appointment before the dose was administered in order to go over the requirements/precautions and ensure I knew and understood the process and had a plan.

The first time I was immediately sent home. For me this was pretty easy since I live alone and have no pets. I did share a washer and dryer with a neighbor though, so the docs suggested I pile up my laundry for the week and wait to wash it on like the 8th or 10th day by which time the emissions were super low. RAI has a pretty short half life. It's a good idea to shower often the first few days, as the RAI is excreted through the skin. Second time I spent about 24 hrs in a hospital isolation room. They took a reading of how much I was emiting before letting me leave - that's a pretty standard way to gauge things. 

Please don't go to a hotel!! That would risk exposure to unsuspecting cleaning staff and you never know if the person sleeping in bed by the wall behind you might be pregnant. If you have any risk category folks at home, such as children, consider having family members living with you to stay elsewhere, such as a friend's or a hotel while you stay at home. By something like the 7th or 10th day there is really no risk for people or pets around you.

Ask lots of questions and make sure you feel comfortable and well informed. It's creepy for sure, but it'll be ok.

Best to you

eileen

 

BT Mama

alapah said:

RAI and isolation

If you do any research you'll find that there are widely differring practices when it comes to RAI and isolation. Some hospitals have you stay overnight for 24 or so hrs and then send you home, while others just send you straight home after taking the pill. This sometimes depends on the actual dosage but also just the policy of the place where you get your dose. There is no universal standard - and that can be frustrating and upsettling.

You might want to check out the Thyca.org webpage about RAI precautions (http://www.thyca.org/pap-fol/rai/#after).

I've had RAI twice. Both times I had an appointment before the dose was administered in order to go over the requirements/precautions and ensure I knew and understood the process and had a plan.

The first time I was immediately sent home. For me this was pretty easy since I live alone and have no pets. I did share a washer and dryer with a neighbor though, so the docs suggested I pile up my laundry for the week and wait to wash it on like the 8th or 10th day by which time the emissions were super low. RAI has a pretty short half life. It's a good idea to shower often the first few days, as the RAI is excreted through the skin. Second time I spent about 24 hrs in a hospital isolation room. They took a reading of how much I was emiting before letting me leave - that's a pretty standard way to gauge things. 

Please don't go to a hotel!! That would risk exposure to unsuspecting cleaning staff and you never know if the person sleeping in bed by the wall behind you might be pregnant. If you have any risk category folks at home, such as children, consider having family members living with you to stay elsewhere, such as a friend's or a hotel while you stay at home. By something like the 7th or 10th day there is really no risk for people or pets around you.

Ask lots of questions and make sure you feel comfortable and well informed. It's creepy for sure, but it'll be ok.

Best to you

eileen

 

RAI at home

Hi Eileen,

First of all from the bottom of my heart, thank you so much for your reply. It was much appreciated! Secondly,  I have done a lot of research and this seems to be part of the problem! There seems to be so many differences depending on where you're reading. Like you pointed out, there seems to be no set standards. Very frustrating.... It is so helpful to just connect with someone who has been through this weird (but lifesaving- lol) treatment.  It doesn't  help that you need to wait so long to heal before they can treat you. Too much time to think!!!   I do have an endo appt on Thursday and I have a booklet of questions for him. He's gonna love me. Based on my research, I do have a plan which includes shipping my 4 legged kids to my son and booting my hubby out to where ever he chooses for the duration, however long that may be. I am also amassing a pile of books I've been meaning to read and plan to have marathon evenings watching reruns of my favorite series. Incidentally, are you back on your regular diet during treatment or still on the low iodine diet? My last plan is to buy a Geiger counter to use before the gang comes home.  Just kidding about that one.

I hope no one would ever even consider a hotel for something like this. I agree that would be awful. 

I am the kind of person that can deal with anything once I know what it is I'm dealing with and this wait with all the uncertainty has been tough.  This is my second bout with cancer and I know that staying positive is important.

Thank you again for taking the time to connect. I wish you the best of wonderful health for the rest of your life.

Namaste,

Carol

 

 

alapah

BT Mama said:

RAI at home

Hi Eileen,

First of all from the bottom of my heart, thank you so much for your reply. It was much appreciated! Secondly,  I have done a lot of research and this seems to be part of the problem! There seems to be so many differences depending on where you're reading. Like you pointed out, there seems to be no set standards. Very frustrating.... It is so helpful to just connect with someone who has been through this weird (but lifesaving- lol) treatment.  It doesn't  help that you need to wait so long to heal before they can treat you. Too much time to think!!!   I do have an endo appt on Thursday and I have a booklet of questions for him. He's gonna love me. Based on my research, I do have a plan which includes shipping my 4 legged kids to my son and booting my hubby out to where ever he chooses for the duration, however long that may be. I am also amassing a pile of books I've been meaning to read and plan to have marathon evenings watching reruns of my favorite series. Incidentally, are you back on your regular diet during treatment or still on the low iodine diet? My last plan is to buy a Geiger counter to use before the gang comes home.  Just kidding about that one.

I hope no one would ever even consider a hotel for something like this. I agree that would be awful. 

I am the kind of person that can deal with anything once I know what it is I'm dealing with and this wait with all the uncertainty has been tough.  This is my second bout with cancer and I know that staying positive is important.

Thank you again for taking the time to connect. I wish you the best of wonderful health for the rest of your life.

Namaste,

Carol

 

 

low iodine diet

My last RAI was on June 4 and I think I had to wait about 48hrs after taking the dose before going off the low iodine diet. I'd actually been on the LID for way longer than needed due to some unforseen circumstances. It's kind of a pain to be on the LID mainly because it can make it challenging traveling or just being out and about and looking for something to eat. It went ok though. I have found the Thyca.org low iodine cookbook to be really helpful! Not everyone is told to go on the LID either - another of the inconsistencies. However, it seems to me that it's not a burden and if you can do it, it might just help the RAi be more effective.

BTW, I think I had the full body scan at about the 10th day. I suppose some hospitals/docs might take a geiger reading at that time (mine didn't but some might).

Sounds like you have a good plan in place. Please keep us posted on your progress. 

eileen

BT Mama

alapah said:

low iodine diet

My last RAI was on June 4 and I think I had to wait about 48hrs after taking the dose before going off the low iodine diet. I'd actually been on the LID for way longer than needed due to some unforseen circumstances. It's kind of a pain to be on the LID mainly because it can make it challenging traveling or just being out and about and looking for something to eat. It went ok though. I have found the Thyca.org low iodine cookbook to be really helpful! Not everyone is told to go on the LID either - another of the inconsistencies. However, it seems to me that it's not a burden and if you can do it, it might just help the RAi be more effective.

BTW, I think I had the full body scan at about the 10th day. I suppose some hospitals/docs might take a geiger reading at that time (mine didn't but some might).

Sounds like you have a good plan in place. Please keep us posted on your progress. 

eileen

RAI at home

hi Eileen,

Wow, I didn't realize that your treatment occured that recently. I hope your scan went well.

i saw the endo doc. He was great and patiently answered my hundreds of questions.  Lol I start the diet this Sunday, go in. For the thyrogen shots 8 days later on Mon and Tues. then. blood work Wed am and pill Wed. Pm then nuclear med decides how long the isolation period will be. I'll be getting 75 millicuries. I feel better now that there's a plan in place.

keep in touch and let me know how you're doing, OK?  Thanks again for the help and support.

All the best to you,

Carol

alapah

BT Mama said:

RAI at home

hi Eileen,

Wow, I didn't realize that your treatment occured that recently. I hope your scan went well.

i saw the endo doc. He was great and patiently answered my hundreds of questions.  Lol I start the diet this Sunday, go in. For the thyrogen shots 8 days later on Mon and Tues. then. blood work Wed am and pill Wed. Pm then nuclear med decides how long the isolation period will be. I'll be getting 75 millicuries. I feel better now that there's a plan in place.

keep in touch and let me know how you're doing, OK?  Thanks again for the help and support.

All the best to you,

Carol

follow up

My initial RAI was in 2009.  My case is complicated and I have lung mets. When tested for RAI uptake ability in 2011 nothing showed which meant my thyroid cells were no longer taking it up so we took RAI off the list of options for me and I moved on to oral chemo meds. However, the last oral chemo drug I was on sometimes triggers ability for uptake (I've been on it for over a year). I was given a small dose of RAI in April or May to test this and it did show uptake, including in some particularly problemmatic mets.

I was given a 100 mc dose on June 4. I had a WBS about a week later and my endocrinologist actually called me that same day because the news was pretty encouraging - significant uptake in both lungs. I finally had a follow up with the radiation oncologist this week and he showed me the scan - tons of areas in both lungs lit up. He was very pleased (me too!). Hopefully it's doing good things for me. He said the soonest a CT scan can really show how well it's worked is about four months out - so that will be October.

I have done the thyrogen route too - so much better than going hypo. Best of luck with the treatment. I'll be sending you loads of positive vibes.

eileen

BT Mama

alapah said:

follow up

My initial RAI was in 2009.  My case is complicated and I have lung mets. When tested for RAI uptake ability in 2011 nothing showed which meant my thyroid cells were no longer taking it up so we took RAI off the list of options for me and I moved on to oral chemo meds. However, the last oral chemo drug I was on sometimes triggers ability for uptake (I've been on it for over a year). I was given a small dose of RAI in April or May to test this and it did show uptake, including in some particularly problemmatic mets.

I was given a 100 mc dose on June 4. I had a WBS about a week later and my endocrinologist actually called me that same day because the news was pretty encouraging - significant uptake in both lungs. I finally had a follow up with the radiation oncologist this week and he showed me the scan - tons of areas in both lungs lit up. He was very pleased (me too!). Hopefully it's doing good things for me. He said the soonest a CT scan can really show how well it's worked is about four months out - so that will be October.

I have done the thyrogen route too - so much better than going hypo. Best of luck with the treatment. I'll be sending you loads of positive vibes.

eileen

Follow up

 

Yay!!!!!!!!!! That is the most awesome news and I am sooooooo happy for you, Eileen. Man, it sounds like it's been a really long haul.  October can't come soon enough, I imagine. It's such a roller coaster of ups and downs but we've got to stay positive.  I tend to start projects to keep my mind off of things.  So far I've got a mess on my kitchen floor where I started pulling out pots and pans to clean under the counters. Most of the mess is still on the floor. I started cleaning the mess from my daughters old room and that's scattered around that room, I've refinished two dressers (that mess is cleaned up tho.  Lol. I look at those messes and smile because I have faith that tomorrow I'll have another energy spurt and can get a little more done!  I'm good for about an hour of cleaning frenzy a day then I'm spent!!  Could be worse right? The point of my rambling is to stay busy, stay positive and be upbeat. You can do it