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lcerrone's Message Board Messages

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RE: Rising tg levels after RAI

by lcerrone - May 15 at 1:10 PM

yes!! Ugh

RE: Rising tg levels after RAI

by lcerrone - May 14 at 9:44 PM

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

So I had my MRI amd whole body scan after 4 mci dose.  Both clear.  So all tests were clear with the exception of the US which a very small solid nodule.  So now we just wait and have another US and blood drawn in June

RE: Rising tg levels after RAI

by lcerrone - April 20 at 6:36 PM

On Apr 19, 2019 11:41 PM ToddlerFather wrote:

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.

I never heard of a PET with low iodine diet and thyrogen.  I am now on the low iodine diet and will be getting thyrogen on the 29th and 30th, then the 4 mci pill..for a diagnostic scan and the RAI  WBS on the 3rd.   Since she is my new endo I'm thinking that she is basically starting over with my case. What is your tg now and what treatments are you doing.  Are you on lenvima or watch and wait.   

RE: Rising tg levels after RAI

by lcerrone - April 19 at 4:31 PM

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 lcerrone - April 18 at 9:09 PM

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 lcerrone - April 16 at 12:00 PM

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 lcerrone - April 15 at 2:18 PM

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

Rising tg levels after RAI

by lcerrone - April 14 at 11:39 PM

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: Tg levels after RAI

by lcerrone - November 06, 2018

My endo is from Jersey Shore Medical in Neptune, NJ.  I wish that UPenn or Sloans would have something in NJ.  Sloan does but all the thyrod cancer specialist are in New York and its a little hard getting there.

RE: Tg levels after RAI

by lcerrone - November 05, 2018

Yes I had it this past April.  I'm just wondering why in Aug it was at 11.9 and in Nov 2017 it was 11.8.  It didn't do anything!!! I guess I was hoping it would go down and I wouldn't be so stressed all the time.  And I am very upset with my endo..he has never called with my WBS results I got the results from my portal.  My husband called his office in July and the girl said well no news is good news..not acceptable!! The next day I received a lab slip from him thru email.  I am thinking of requesting labwork from my portal to see if he will send it and then I really would like to get a second opinion I just don't know where to go 

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