Radio iodine dose seems way high

MarinMark

My two docs are thinking I should have a whopping 150 to 175 of radio iodine because I had pap cancer in both thyroid lobes and in some lymph nodes nearby which were removed. My neck ultrasound is normal show all nodes under 0.7 cm and my thyroid is gone. Several docs cannot feel any nodes. Okay, so I'm a man and over 55, but that 175 of rai sounds very high.

Any thoughts ?

amorriso

dosage
Hi there. I just calculated my last RAI dose in mci's - it worked out to 200 mci's!!! I was given 7.43 GBq - no idea what it means, but I found a conversion chart. Wow - I knew I was getting a high dose but didnt think it was that much.

Anyway - my PTC had spread to my lymph nodes too and I'm 46. I guess they want to make sure its gone?

Cheers

Andrea

CherylMike

Ask your doctor
I would ask the doctor why he has decided that this is the dose that you need. If you are not satisfied with your doctors' answer, get a second opinion. As you indicated, you do have some risk factors that may be driving his decision - your age and the fact the it has mets to your nodes. It does sound good that things are showing well. I was told that there are almost always traces of thyroid tissue left. The hope is that the RAI will take care of these residual pieces. I know my dose of I131 was 103. I had tumors in both sides of my thyroid, but both were well encapsulated and had no node involvement. ( The results from the FNA came back benign, but my ENT felt it was inconlusive because he could not get a "good"sample from the tumor, it was too calcified. He recommended removing the thyroid. I got a second opinion. The second doctor agreed that it needed to come out. I then felt confident making the decision to have it removed and am so glad that I did).

nasher

its all about how much thyroid is left
its all about how much tissue they could not

i got 175mCi for my dosage

if you have questions you need to ask now and not later

they described why to me but I dont remember it all.. but they gave me good reasons

MarinMark

nasher said:

its all about how much thyroid is left
its all about how much tissue they could not

i got 175mCi for my dosage

if you have questions you need to ask now and not later

they described why to me but I dont remember it all.. but they gave me good reasons

Got another opinion and she
Got another opinion and she said 150. There's some recommendation from the Univ of Calif in Los Angeles. PTC with any node spread means 150 recommended. Some docs feel one must go higher initially, but others think that 150 is fine and doesn't hurt future RAI treatments if they are needed. It certainly seems with this disease there is often no right or wrong and too many things are not known and not studied.

nasher

MarinMark said:

Got another opinion and she
Got another opinion and she said 150. There's some recommendation from the Univ of Calif in Los Angeles. PTC with any node spread means 150 recommended. Some docs feel one must go higher initially, but others think that 150 is fine and doesn't hurt future RAI treatments if they are needed. It certainly seems with this disease there is often no right or wrong and too many things are not known and not studied.

yes its hard to study if they should go higher initaly or not
the higher they give you the more likely they will knock it all out ... but of corse the more likely that there will be more side effects or other problems.

MarinMark

nasher said:

yes its hard to study if they should go higher initaly or not
the higher they give you the more likely they will knock it all out ... but of corse the more likely that there will be more side effects or other problems.

Yes, but the higher amounts
Yes, but the higher amounts counts toward a lifetime maximum and has more side effects and no one has said that recurrences or re-appearances are more difficult to treat.

sunnyaz

MarinMark said:

Yes, but the higher amounts
Yes, but the higher amounts counts toward a lifetime maximum and has more side effects and no one has said that recurrences or re-appearances are more difficult to treat.

Amounts of RAI
My first round of RAI was done with a test/scan dose and then the amounts left in my body were measured to determine my treatment dose (which was 83 mCi's). It didn't work because I still had thyroid tissue left and then I had metastasis even after what they called a "clean scan".

My second dose wasn't measured first, they based it on my recurrence factor, B-RAF mutation gene and my weight. I was given a whopping 183 mCi's. That was in February of this year. As of Thursday at my follow up appointment I had an Ultrasound and blood work. My US showed no lymph metastasis and my blood work backed it up. My TG and my TG Antibodies are undetectable.

Therefore, I firmly believe in the more aggressive approach when it comes to RAI treatment. Just my two cents. Take it for what it's worth, but I am cancer free since February after a double metastasis, two RAI's (first of which didn't work) and I am B-RAF positive. I am starting on the six month watch plan and then I will go to the yearly watch. My Endocrinologist said that I may not need another RAI scan if my US's and blood work remain in the undetectable range. My TSH is in the VERY Hyper range (0.12) and will stay that way for some time. My Endocrinologist thinks this is the best way to keep me cancer free so I will continue to take the same dose of 175 mcg's of Synthroid (not the generic). I am continuing to loose the weight I gained as well. I have lost 28 pounds since my third surgery in December 2010. Slowly but surely I am getting my old self back with lots of patience and time.

Blessings,
Julie-SunnyAZ

sfl67

sunnyaz said:

Amounts of RAI
My first round of RAI was done with a test/scan dose and then the amounts left in my body were measured to determine my treatment dose (which was 83 mCi's). It didn't work because I still had thyroid tissue left and then I had metastasis even after what they called a "clean scan".

My second dose wasn't measured first, they based it on my recurrence factor, B-RAF mutation gene and my weight. I was given a whopping 183 mCi's. That was in February of this year. As of Thursday at my follow up appointment I had an Ultrasound and blood work. My US showed no lymph metastasis and my blood work backed it up. My TG and my TG Antibodies are undetectable.

Therefore, I firmly believe in the more aggressive approach when it comes to RAI treatment. Just my two cents. Take it for what it's worth, but I am cancer free since February after a double metastasis, two RAI's (first of which didn't work) and I am B-RAF positive. I am starting on the six month watch plan and then I will go to the yearly watch. My Endocrinologist said that I may not need another RAI scan if my US's and blood work remain in the undetectable range. My TSH is in the VERY Hyper range (0.12) and will stay that way for some time. My Endocrinologist thinks this is the best way to keep me cancer free so I will continue to take the same dose of 175 mcg's of Synthroid (not the generic). I am continuing to loose the weight I gained as well. I have lost 28 pounds since my third surgery in December 2010. Slowly but surely I am getting my old self back with lots of patience and time.

Blessings,
Julie-SunnyAZ

Julie,
Congratulations on
Julie,

Congratulations on the great results! I'm glad you got such good news and the weight loss is great as well.

Wishing you well and continued good health.

Shelia

sunnyaz

sfl67 said:

Julie,
Congratulations on
Julie,

Congratulations on the great results! I'm glad you got such good news and the weight loss is great as well.

Wishing you well and continued good health.

Shelia

Thanks Shelia
I am so grateful for my current wellness. I never take it for granted. I went through a pretty rough time for a while.

I am very excited about the 2012 Relay for Life event in our community which will take place March 30-31. This year I will actually be our Team Captain and serving on the committee for Team Development. I hope to excite many people about getting involved in raising money for the American Cancer Society.

A little history for those who aren't aware of this event. The event began when Dr. Gordon Klatt of Tacoma Washington ran around a track for 24 hours to emphasize that cancer does not sleep. He raised $27,000 for research programs, advocacy and education.

This past March I was a participant for the first time. I was two months post RAI and three months post my third surgery. I wasn't up for much activity nor was I a great deal of help except that I raised the most money out of our team members. The first lap, the survivors lap, simply exhausted me and I was so emotional at the outpouring of love and support that I cried while trying to help hold the banner. The tears really poured when a young teenage girl handed me a hand made bracelet with the cancer colors that she had made at the teen event the night before. The kids event was the night before and they walked all night long and did activities.

I had to bring an air mattress to the event because I would get so tired during the day I needed to lay down several times to rest. My team kept the relay going and cheered for me with each and every lap I was able to do. This March I will be the one racing around the track and encouraging others to keep fighting and never give up. I will be taking the laps for those that can't and I will commit to raising more money than last year.

Sorry for the long winded thanks, but I am just so excited!

Blessings,
Julie-SunnyAZ

MarinMark

sunnyaz said:

Amounts of RAI
My first round of RAI was done with a test/scan dose and then the amounts left in my body were measured to determine my treatment dose (which was 83 mCi's). It didn't work because I still had thyroid tissue left and then I had metastasis even after what they called a "clean scan".

My second dose wasn't measured first, they based it on my recurrence factor, B-RAF mutation gene and my weight. I was given a whopping 183 mCi's. That was in February of this year. As of Thursday at my follow up appointment I had an Ultrasound and blood work. My US showed no lymph metastasis and my blood work backed it up. My TG and my TG Antibodies are undetectable.

Therefore, I firmly believe in the more aggressive approach when it comes to RAI treatment. Just my two cents. Take it for what it's worth, but I am cancer free since February after a double metastasis, two RAI's (first of which didn't work) and I am B-RAF positive. I am starting on the six month watch plan and then I will go to the yearly watch. My Endocrinologist said that I may not need another RAI scan if my US's and blood work remain in the undetectable range. My TSH is in the VERY Hyper range (0.12) and will stay that way for some time. My Endocrinologist thinks this is the best way to keep me cancer free so I will continue to take the same dose of 175 mcg's of Synthroid (not the generic). I am continuing to loose the weight I gained as well. I have lost 28 pounds since my third surgery in December 2010. Slowly but surely I am getting my old self back with lots of patience and time.

Blessings,
Julie-SunnyAZ

Great, Julie
But it's difficult to know what would happen if you had the 150 dose. You could have had the same nice outcome. What side effects, if any, did you have from the 175 dose ?

MarinMark

amorriso said:

dosage
Hi there. I just calculated my last RAI dose in mci's - it worked out to 200 mci's!!! I was given 7.43 GBq - no idea what it means, but I found a conversion chart. Wow - I knew I was getting a high dose but didnt think it was that much.

Anyway - my PTC had spread to my lymph nodes too and I'm 46. I guess they want to make sure its gone?

Cheers

Andrea

amorriso--- side effects from 200 ?
What side effects, if any, did you have from 200 and how long did they last ?

sunnyaz

MarinMark said:

Great, Julie
But it's difficult to know what would happen if you had the 150 dose. You could have had the same nice outcome. What side effects, if any, did you have from the 175 dose ?

Side Effects
I didn't really have a lot of side effects. After about three days I had a slight metallic taste in my mouth but it went away within a few weeks. Some foods (such as sausage) tasted a little weird but that went away also. One morning I woke up with some tenderness in my cheeks (salivary glands) but after drinking liquids and massaging them I felt better. I remember being able to eat a hot pepper without so much as a slight burn or watering of the eyes. Now, I am back to avoiding food that is too spicy as it will burn my mouth just like before the RAI.

As I said before, my Nuclear Medicine doctor gave me steroids to take while I was on the RAI to help eliminate destruction of the salivary glands and taste buds. I believe they worked because seven months later I don't have any problem and they didn't seem to work adversely on the RAI.

Who knows what would have happened if I had originally taken the 150 mCi's instead of the lower dose the first time around. I do know that when I had my TT there was no lymph node involvement, so I was cancer free when I went into RAI the first time. I found my cancer at a very early stage. My node was very small and I started noticing symptoms almost one year before the node was palpable. I was able to feel the node one day while I was sitting in school and thought it was odd that I had a bump on one side of my thyroid but not the other. I was at my doctor's office every few weeks with at least one or two symptoms of hypothyroidism. My doctor brushed them off as "getting older". My blood work was normal and stayed that way through the day I had my TT. My levels never fluctuated to indicate a problem.

I was at a different facility for my second round of RAI. This doctor took a totally different approach to treatment. The first doctor/hospital seemed more conservative with their treatment approach which is why I changed when the option was given to me.

So, you might be okay with the 150 mCi's. Knowing what I know now, I would have opted for the largest possible dose to begin with. There aren't any more side effects than with the lower dose, so I think it's better to be more aggressive in the beginning. I would have preferred to have one RAI instead of two. But, that is just my take of the subject. Your care is your choice and you have to go with your gut instincts.

Blessings and Best Wishes,
Julie-SunnyAZ