Thyrogen/RAI next week - extremely nervous

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RE: Thyrogen/RAI next week - extremely nervous

by MommyBear on Sun Jun 02, 2019 11:22 PM

Quote | Reply

On Jun 02, 2019 1:51 AM ToddlerFather wrote:

Being 70 mCi means that you have somewhat less to worry about.  Just put geometry on your side: take the back right seat, which besides being somewhat less close, also puts hard matter (a seat) between you and him. 

For all cancers, lungs, bones and brain (in that order, due to blood transport) are the most common locations for distant metastases. But while not all ThyCa get responses from RAI, it seems at lest from the sharing forums that local propagation to lymph nodes or regrowth happens more than distant metastases. 

And what the future reserves to you is something yet to be known. Statistics are only useful to populations; for your case, you only care about you. 

One standard treatment I had after RAI, which I believe was the right call by my endo, was TSH suppression. This calms down the thyroidean cells, and while it did not prevent the metastases, the low rate of growth that is allowing time to new treatments to be developed is very likely due to this. 

But on adjunct treatments, I started LDN (Low Dose Naltrexone) and it really caused a turn around. My Tg was growing exponentially until hitting 345, and when the full dose of LDN kicked in, it is continually decreasing, being now at 245. If the linear extrapolation ends up happening, LDN alone might get me met-free by 2021. I can share by private message the spreadsheet of my Tg history if someone is interested. References:

https://www.ldnscience.org/ "" target="_blank" rel="nofollow">https://www.ldnscience.org/ " target="_blank" rel="nofollow">https://www.ldnscience.org/

https://www.ldnresearchtrust.org/ "" target="_blank" rel="nofollow">https://www.ldnresearchtrust.org/ " target="_blank" rel="nofollow">https://www.ldnresearchtrust.org/

Instead of waiting for the tumours to adapt to LDN, since tumours are known to find survival alternatives, I started taking also ALA (Alpha Lipoic Acid). It hasn't done any difference so far, but I'm still ramping up its dosage so it might still have an effect down the road, or no effect at all. Time will tell. 

And even if ALA doesn't do a thing, is one of the countermeasures to DCA (Dichloroacetic Acid) side effects. The standard DCA package is to take DCA, ALA, Vit B1, Acetyl-L-Carnitine; DCA for the effect on cancer, the others to fight side effects. 

Reference:

https://www.dcaguide.org/ "" target="_blank" rel="nofollow">https://www.dcaguide.org/ " target="_blank" rel="nofollow">https://www.dcaguide.org/

So the plan at this point is to start DCA by the end of this year, regardless of ALA having effect or not, and see how 2020 and 2021 go. But I have also been following standard treatment research; that's why I followed Selumetinib clinical trials to their end with no outcome improvement, and I am still following other research.

The one with a shorter term path is Trametinib; it's a stronger MEK inhibitor than Selumetinib, and might achieve what Selumetinib failed to do for non-RAI-avid tumours: regain iodine acceptance and then use RAI to kill the cells. Because  Trametib is already approved for other conditions, its path to use in ThyCA can be shorter. References:

https://clinicaltrials.gov/ct2/show/NCT02152995 "" target="_blank" rel="nofollow">https://clinicaltrials.gov/ct2/show/NCT02152995 " target="_blank" rel="nofollow">https://clinicaltrials.gov/ct2/show/NCT02152995

https://www.youtube.com/watch?v=2bVHJM5aWCA "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=2bVHJM5aWCA " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=2bVHJM5aWCA

The one with a longer road ahead is an endocannabinoid called NADA (N-Arachidonoyl dopamine). The problem at this point is synthesizing it; although its name, it can't be obtained from Cannabis Sativa. It's found in very small amounts in large animal brains (including humans), so the research on it is currently using extracts from cattle brains. This hampers the research on using it; which is unfortunate, since it seems to be a kill switch to cells with my specific mutation(NRAS). But even if it's not feasible to make it, the fact our brains already have a bit of NADA makes it less likely for brain metastases to grow. 

While opinions vary, the results on you is something that can be easily determined. So unless something harms your body or your wallet, there is no reason not to try. One thing that helped me a lot in better understanding the  big picture was seeing these videos:

https://thyroidworldcongress.com/videos-2017/ "" target="_blank" rel="nofollow">https://thyroidworldcongress.com/videos-2017/ " target="_blank" rel="nofollow">https://thyroidworldcongress.com/videos-2017/

I don't suggest doing it now because the new edition of this event is happening in 20 days, so you could prefer seeing the updated version of this content afterwards. What you could do at this point is reaching out to the hospital or lab where your tumour tissue is being stored; knowing where it is and for how long it will be preserved is key in using afterwards for genetic testing if things go south. 

The other thing to do sooner rather than later is taking care of your mind and soul. You seem to already have a negative view of things, which is not good; pick one among the 3 Ps: psychologist, psychiatrist or priest, whichever works for you, and brace yourself for the most challenging side of cancer, notably one that acts as slowly as ThyCa does. Being slow means your survival instincts won't kick in, but your fears will put you down. 

Welcome to the path, thanks for your good wishes and wish well on your journey too. 

Hi ToddlerFather! Thank you for sharing some great insights, and their supporting references as well. Your generosity with information and positivity is very much appreciated.

I have to admit, you hit the nail on the head in regards to my current state of mind. Thank you. I think I know which P I need right now, and will definitely avail myself of an audience with soon. 

Thank you so much. Let's keep in touch.

RE: Thyrogen/RAI next week - extremely nervous

by MommyBear on Sun Jun 02, 2019 11:34 PM

Quote | Reply

On Jun 02, 2019 1:51 AM ToddlerFather wrote:

Being 70 mCi means that you have somewhat less to worry about.  Just put geometry on your side: take the back right seat, which besides being somewhat less close, also puts hard matter (a seat) between you and him. 

For all cancers, lungs, bones and brain (in that order, due to blood transport) are the most common locations for distant metastases. But while not all ThyCa get responses from RAI, it seems at lest from the sharing forums that local propagation to lymph nodes or regrowth happens more than distant metastases. 

And what the future reserves to you is something yet to be known. Statistics are only useful to populations; for your case, you only care about you. 

One standard treatment I had after RAI, which I believe was the right call by my endo, was TSH suppression. This calms down the thyroidean cells, and while it did not prevent the metastases, the low rate of growth that is allowing time to new treatments to be developed is very likely due to this. 

But on adjunct treatments, I started LDN (Low Dose Naltrexone) and it really caused a turn around. My Tg was growing exponentially until hitting 345, and when the full dose of LDN kicked in, it is continually decreasing, being now at 245. If the linear extrapolation ends up happening, LDN alone might get me met-free by 2021. I can share by private message the spreadsheet of my Tg history if someone is interested. References:

https://www.ldnscience.org/ "" target="_blank" rel="nofollow">https://www.ldnscience.org/ " target="_blank" rel="nofollow">https://www.ldnscience.org/

https://www.ldnresearchtrust.org/ "" target="_blank" rel="nofollow">https://www.ldnresearchtrust.org/ " target="_blank" rel="nofollow">https://www.ldnresearchtrust.org/

Instead of waiting for the tumours to adapt to LDN, since tumours are known to find survival alternatives, I started taking also ALA (Alpha Lipoic Acid). It hasn't done any difference so far, but I'm still ramping up its dosage so it might still have an effect down the road, or no effect at all. Time will tell. 

And even if ALA doesn't do a thing, is one of the countermeasures to DCA (Dichloroacetic Acid) side effects. The standard DCA package is to take DCA, ALA, Vit B1, Acetyl-L-Carnitine; DCA for the effect on cancer, the others to fight side effects. 

Reference:

https://www.dcaguide.org/ "" target="_blank" rel="nofollow">https://www.dcaguide.org/ " target="_blank" rel="nofollow">https://www.dcaguide.org/

So the plan at this point is to start DCA by the end of this year, regardless of ALA having effect or not, and see how 2020 and 2021 go. But I have also been following standard treatment research; that's why I followed Selumetinib clinical trials to their end with no outcome improvement, and I am still following other research.

The one with a shorter term path is Trametinib; it's a stronger MEK inhibitor than Selumetinib, and might achieve what Selumetinib failed to do for non-RAI-avid tumours: regain iodine acceptance and then use RAI to kill the cells. Because  Trametib is already approved for other conditions, its path to use in ThyCA can be shorter. References:

https://clinicaltrials.gov/ct2/show/NCT02152995 "" target="_blank" rel="nofollow">https://clinicaltrials.gov/ct2/show/NCT02152995 " target="_blank" rel="nofollow">https://clinicaltrials.gov/ct2/show/NCT02152995

https://www.youtube.com/watch?v=2bVHJM5aWCA "" target="_blank" rel="nofollow">https://www.youtube.com/watch?v=2bVHJM5aWCA " target="_blank" rel="nofollow">https://www.youtube.com/watch?v=2bVHJM5aWCA

The one with a longer road ahead is an endocannabinoid called NADA (N-Arachidonoyl dopamine). The problem at this point is synthesizing it; although its name, it can't be obtained from Cannabis Sativa. It's found in very small amounts in large animal brains (including humans), so the research on it is currently using extracts from cattle brains. This hampers the research on using it; which is unfortunate, since it seems to be a kill switch to cells with my specific mutation(NRAS). But even if it's not feasible to make it, the fact our brains already have a bit of NADA makes it less likely for brain metastases to grow. 

While opinions vary, the results on you is something that can be easily determined. So unless something harms your body or your wallet, there is no reason not to try. One thing that helped me a lot in better understanding the  big picture was seeing these videos:

https://thyroidworldcongress.com/videos-2017/ "" target="_blank" rel="nofollow">https://thyroidworldcongress.com/videos-2017/ " target="_blank" rel="nofollow">https://thyroidworldcongress.com/videos-2017/

I don't suggest doing it now because the new edition of this event is happening in 20 days, so you could prefer seeing the updated version of this content afterwards. What you could do at this point is reaching out to the hospital or lab where your tumour tissue is being stored; knowing where it is and for how long it will be preserved is key in using afterwards for genetic testing if things go south. 

The other thing to do sooner rather than later is taking care of your mind and soul. You seem to already have a negative view of things, which is not good; pick one among the 3 Ps: psychologist, psychiatrist or priest, whichever works for you, and brace yourself for the most challenging side of cancer, notably one that acts as slowly as ThyCa does. Being slow means your survival instincts won't kick in, but your fears will put you down. 

Welcome to the path, thanks for your good wishes and wish well on your journey too. 

Best of luck on your treatments, and keep inspiring others to learn. Indeed, knowledge is power - in our case, power over cancer.

RE: Thyrogen/RAI next week - extremely nervous

by butterfly501 on Mon Jun 03, 2019 08:22 AM

Quote | Reply

Best of luck on your first ablation!

Keep us posted on your results and experience!

New comers will love to read your input.

Keep us posted! keep in touch!

RE: Thyrogen/RAI next week - extremely nervous

by MommyBear on Mon Jun 03, 2019 01:04 PM

Quote | Reply

thank you

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