Rising tg levels after RAI

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RE: Rising tg levels after RAI

by lcerrone on Sat Apr 20, 2019 06:36 PM

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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 ToddlerFather on Sat Apr 20, 2019 06:56 PM

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When I did my PET-CT with low iodine and thyrogen I also did a WBS, and that was key to complete characterize my tumors as non-RAI-avid (even stimulated, WBS showed nothing). So I strongly suggest also doing a PET-CT at this time. 

My Tg peaked at 356 and is now down to 245, thanks to LDN (Low Dose Naltrexone). My oncologist sees no reason to do Lenvima or Nexavar while I'm asymptomatic,  even Tg was growing exponetially, and sees even less reason to do something due to the remission caused by LDN. 

I also added alpha-lipoic acid, but it hasn't made any trends to change yet; but LDN was also like this: no effect during the ramp-up, only when reached the ideal dosage. 

And after that I plan to add DCA to the mix, but if some residual tumors remain, the plan is to wait for two developments, one in clinical trial, the other in long term research:

- MSKCC had good results with Selumetinib for a few patients with my specific mutation in making them reacquire iodine; but when they expanded the trial, it failed to prove a conclusive result. They now believe another MEK inhibitor called Trametinib might do the trick, and there is an ongoing clinical trial for that (you might want to join it). A possible horizon for this is a couple of years.

- There is an endocanabionid called NADA that is pretty much a kill switch for cells with my mutation, and although most large animals have a small amount in their brains (including us human beings), it's yet unknown how to synthetize it in scale. Even research activities with NADA require extraction from cattle, making both research and - if approved - manufacturing quite challenging. A possible horizon for this is a decade.

RE: Rising tg levels after RAI

by lcerrone on Tue May 14, 2019 09:44 PM

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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 butterfly501 on Wed May 15, 2019 12:40 AM

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On May 14, 2019 9:44 PM lcerrone 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

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

But your Tg is still on the rise?

RE: Rising tg levels after RAI

by ToddlerFather on Wed May 15, 2019 04:25 AM

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The nodule is actually good news; if the remaining thyrodean cells are only there, it's an area where it will take long before becoming a threat and an area that is mostly accessible to surgical removal. 

But the lack of a Thyrogen-estimulated PET/CT means this is just one among many options. 

RE: Rising tg levels after RAI

by lcerrone on Wed May 15, 2019 01:10 PM

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yes!! Ugh

RE: Rising tg levels after RAI

by butterfly501 on Thu May 16, 2019 05:55 AM

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On May 15, 2019 1:10 PM lcerrone wrote:

yes!! Ugh

The professional guidelines recommend pet with fdg when Tg rises but RAI imaging is negative. 

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