Rising tg levels after RAI

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Rising tg levels after RAI

by lcerrone on Sun Apr 14, 2019 11:39 PM

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Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

RE: Rising tg levels after RAI

by butterfly501 on Mon Apr 15, 2019 08:57 AM

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On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

I-131 ablation for you again? 

What's your diagnosis?  Solid tumor?

Are they looking at targeted therapies, ie:TKI?

RE: Rising tg levels after RAI

by lcerrone on Mon Apr 15, 2019 02:18 PM

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On Apr 15, 2019 8:57 AM butterfly501 wrote:

On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

I-131 ablation for you again? 

What's your diagnosis?  Solid tumor?

Are they looking at targeted therapies, ie:TKI?

Yes I am having !131 at 4 mci

Pappillary with follicular variant.  Don't know if it was solid or not.  My last endo kept talking about Lenvima at a 5 tg because he kept telling me it was near the aorta.  .  That is not evident on this PET.  The PET does show soft tissue in the right thyroid bed, no associated hypermetabolism with a SUV 0f 1.8.  Uptake not diagnostic of malignancy.  That was also on my WBS in April 2018

RE: Rising tg levels after RAI

by butterfly501 on Tue Apr 16, 2019 01:23 AM

Quote | Reply

On Apr 15, 2019 2:18 PM lcerrone wrote:

On Apr 15, 2019 8:57 AM butterfly501 wrote:

On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

I-131 ablation for you again? 

What's your diagnosis?  Solid tumor?

Are they looking at targeted therapies, ie:TKI?

Yes I am having !131 at 4 mci

Pappillary with follicular variant.  Don't know if it was solid or not.  My last endo kept talking about Lenvima at a 5 tg because he kept telling me it was near the aorta.  .  That is not evident on this PET.  The PET does show soft tissue in the right thyroid bed, no associated hypermetabolism with a SUV 0f 1.8.  Uptake not diagnostic of malignancy.  That was also on my WBS in April 2018

4 mCi of I-131 for diagnostic purposes?

RE: Rising tg levels after RAI

by lcerrone on Tue Apr 16, 2019 12:00 PM

Quote | Reply

On Apr 16, 2019 1:23 AM butterfly501 wrote:

On Apr 15, 2019 2:18 PM lcerrone wrote:

On Apr 15, 2019 8:57 AM butterfly501 wrote:

On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

I-131 ablation for you again? 

What's your diagnosis?  Solid tumor?

Are they looking at targeted therapies, ie:TKI?

Yes I am having !131 at 4 mci

Pappillary with follicular variant.  Don't know if it was solid or not.  My last endo kept talking about Lenvima at a 5 tg because he kept telling me it was near the aorta.  .  That is not evident on this PET.  The PET does show soft tissue in the right thyroid bed, no associated hypermetabolism with a SUV 0f 1.8.  Uptake not diagnostic of malignancy.  That was also on my WBS in April 2018

4 mCi of I-131 for diagnostic purposes?

Just told my the nuclear medicine it will find and kill!

RE: Rising tg levels after RAI

by ToddlerFather on Tue Apr 16, 2019 02:47 PM

Quote | Reply

On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

A PET without Thyrogen estimulation has a high chance of not showing anything. But even so it has diagnostic value, since it measure how differentiated / undifferentiated your tumor cells are. 

4 mCi is a small dose for RAI, it's just a tracer for a WBS. BTW, if your nuclear medicine facility supports, this would be a good use case for I-124 instead of I-131, which can provide more accurate lesion dosimmetry in order to plan a possible new RAI. 

Have you done any UltraSound recently ? This is still the best imaging method for the thyroid bed.

RE: Rising tg levels after RAI

by lcerrone on Thu Apr 18, 2019 09:09 PM

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On Apr 16, 2019 2:47 PM ToddlerFather wrote:

On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

A PET without Thyrogen estimulation has a high chance of not showing anything. But even so it has diagnostic value, since it measure how differentiated / undifferentiated your tumor cells are. 

4 mCi is a small dose for RAI, it's just a tracer for a WBS. BTW, if your nuclear medicine facility supports, this would be a good use case for I-124 instead of I-131, which can provide more accurate lesion dosimmetry in order to plan a possible new RAI. 

Have you done any UltraSound recently ? This is still the best imaging method for the thyroid bed.

i am making an appt for an US.  Also my tg is now at 20.6 and dr requested blood drawn from a different lab rather than labcorp.  If its still at 20 they want a Brian MRI

RE: Rising tg levels after RAI

by butterfly501 on Fri Apr 19, 2019 04:20 AM

Quote | Reply

On Apr 18, 2019 9:09 PM lcerrone wrote:

On Apr 16, 2019 2:47 PM ToddlerFather wrote:

On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

A PET without Thyrogen estimulation has a high chance of not showing anything. But even so it has diagnostic value, since it measure how differentiated / undifferentiated your tumor cells are. 

4 mCi is a small dose for RAI, it's just a tracer for a WBS. BTW, if your nuclear medicine facility supports, this would be a good use case for I-124 instead of I-131, which can provide more accurate lesion dosimmetry in order to plan a possible new RAI. 

Have you done any UltraSound recently ? This is still the best imaging method for the thyroid bed.

i am making an appt for an US.  Also my tg is now at 20.6 and dr requested blood drawn from a different lab rather than labcorp.  If its still at 20 they want a Brian MRI

A brain MRI?  why?

RE: Rising tg levels after RAI

by lcerrone on Fri Apr 19, 2019 04:31 PM

Quote | Reply

On Apr 19, 2019 4:20 AM butterfly501 wrote:

On Apr 18, 2019 9:09 PM lcerrone wrote:

On Apr 16, 2019 2:47 PM ToddlerFather wrote:

On Apr 14, 2019 11:39 PM lcerrone wrote:

Had RAI in April of 2018 with uptake. Uptake showed uptake in the thyroid bed and left lower lung. In Aug my tg was still at 11.9.  Just had a PET which was clear, however my tg is now at 20!!  I am now on the LID diet and will have a RAI with 4 mcis..  I am at my wits end.  Been dealing with this for 6 1/2 yrs and have never had a 0 tg.  Any thoughts on this.  

A PET without Thyrogen estimulation has a high chance of not showing anything. But even so it has diagnostic value, since it measure how differentiated / undifferentiated your tumor cells are. 

4 mCi is a small dose for RAI, it's just a tracer for a WBS. BTW, if your nuclear medicine facility supports, this would be a good use case for I-124 instead of I-131, which can provide more accurate lesion dosimmetry in order to plan a possible new RAI. 

Have you done any UltraSound recently ? This is still the best imaging method for the thyroid bed.

i am making an appt for an US.  Also my tg is now at 20.6 and dr requested blood drawn from a different lab rather than labcorp.  If its still at 20 they want a Brian MRI

A brain MRI?  why?

Apparently she wants to cross all "t's" and dot all "i's".  She said the PETs only scan the jaw area of the head The labs came back about the same level so Im going for an MRI.  Her nurse naviagator said the dr thinks it is the neck (at least I think thats what she said)  I don't even know if a US will detect anything because of all the scar tissue from 3 surgeries and EBR!!  I have been dealing with this for 7 yrs, from the very beginning I have had the worsed care!!!  She is my new endocrine oncologist, so I am hoping she helps!!

RE: Rising tg levels after RAI

by ToddlerFather on Fri Apr 19, 2019 11:41 PM

Quote | Reply

While I understand the reasoning for a brain MRI at some point in the diagnostic process, I believe it would be at least the 3rd step... the first would be an ultrasound, as I already said and you are already doing one. 

The 2nd would be redoing the PET, but with iodine diet plus Thyrogen stimulation. While the PET has indeed some possible difficulties imaging the brain, the more likely reason for the PET to show nothing is that differentiated thyroid cancer cells don't take that much sugar because normal thyroid cells are as such. 

Only after not finding anything in both US and stimulated PET, I believe a brain MRI would be justified. Even though brain MRI is not a taxing exam and probably similarly expensive to a PET-CT, for me it makes sense to go from higher likelihood down to lower odds. 

Just FYI, my Tg was 254 and a PET without Thyrogen stimulation showed no FDG captation at all, while lungs CT still showed tumors of up to 1,5cm. 

When the tumors showed FDG incorporation in a previous PET-CT, Tg was higher than 500 due to stimulation... so I would thing surprising with a Tg of 20 for anything to appear at a PET.

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