Thyrogen/RAI next week - extremely nervous

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RE: Thyrogen/RAI next week - extremely nervous

by MommyBear on Thu May 30, 2019 11:30 PM

Quote | Reply

On Jun 17, 2017 11:47 PM sh1117 wrote:

Hi all,

My post is a little last minute considering my first thyrogen shot is Monday 6/19... but I'm hoping some of you can offer some reassurance/encouragment. 

I have a tremendous fear of nausea and vomitting and am very nervous about the possibility of getting sick from the thyrogen shots and/or the RAI. I've put off this treatment for almost a year due to this fear :( 

I'd appreciate it if anyone could share their personal experiences with the shots and the RAI, or offer any advice.

Thank you!

Hi sh1117!

i realize i am responding to a 2-yr old post, but I hope you are still out there. I am in exactly the same position you were when you posted - I am now anxiously awaiting my RAI in 3 weeks and making myself crazy in the process.

I wanted to ask how you are doing, 2 years post-RAI and post thyroid CA overall

RE: Thyrogen/RAI next week - extremely nervous

by ToddlerFather on Sat Jun 01, 2019 01:27 AM

Quote | Reply

On May 30, 2019 11:30 PM MommyBear wrote:

On Jun 17, 2017 11:47 PM sh1117 wrote:

Hi all,

My post is a little last minute considering my first thyrogen shot is Monday 6/19... but I'm hoping some of you can offer some reassurance/encouragment. 

I have a tremendous fear of nausea and vomitting and am very nervous about the possibility of getting sick from the thyrogen shots and/or the RAI. I've put off this treatment for almost a year due to this fear :( 

I'd appreciate it if anyone could share their personal experiences with the shots and the RAI, or offer any advice.

Thank you!

Hi sh1117!

i realize i am responding to a 2-yr old post, but I hope you are still out there. I am in exactly the same position you were when you posted - I am now anxiously awaiting my RAI in 3 weeks and making myself crazy in the process.

I wanted to ask how you are doing, 2 years post-RAI and post thyroid CA overall

My RAI 7 years ago was very uneventful, like what you will find most, if not all, RAI experiences in this forum. From the clothes I used in hospital, only 1 underwear and 1 t-shirt were found to be too contaminated. You don't actually feel like you had a procedure, to the point I started going close to a physicist that was measuring my radiation... he jumped back in fear for his life, and I felt like a comics character. ;-)

But regarding ThyCa, my journey has been a bit harsh. Soon after RAI Thyroglobulin levels started slowly raising, signalling some thyrodean tissue (malign or not undetermined at that point) was still there. 5 years after RAI, lung metastases - of a non-RAI-avid type - were found, and this is still an ongoing war. 

I also found that RAI dosage that was given to me, 200 mCi, is seldom recommended nowadays. So if your planned dosage is higher than 100 mCi, I would ask the MD for a through explanation of why such high dosage was chosen. But that high dosage did nothing to cause metastases, it only increased radiation side effects risk without good cause. 

And more recently, a clinical trial of a potential drug showed a low response rate of RAI compared to what most patients are made to believe. This is not to dissuade you from doing RAI; on the contrary, I believe that even a 40% response rate (which is the lower bound indicated in that trial, but the trial requirements can make that response rate different from the general population) is worthwhile pursuing. Just take the "silver bullet" speech with a grain of salt so you can follow the treatment guidelines but still be aware that sometimes it doesn't work. 

RE: Thyrogen/RAI next week - extremely nervous

by MommyBear on Sat Jun 01, 2019 05:19 PM

Quote | Reply

On Jun 01, 2019 1:27 AM ToddlerFather wrote:

On May 30, 2019 11:30 PM MommyBear wrote:

On Jun 17, 2017 11:47 PM sh1117 wrote:

Hi all,

My post is a little last minute considering my first thyrogen shot is Monday 6/19... but I'm hoping some of you can offer some reassurance/encouragment. 

I have a tremendous fear of nausea and vomitting and am very nervous about the possibility of getting sick from the thyrogen shots and/or the RAI. I've put off this treatment for almost a year due to this fear :( 

I'd appreciate it if anyone could share their personal experiences with the shots and the RAI, or offer any advice.

Thank you!

Hi sh1117!

i realize i am responding to a 2-yr old post, but I hope you are still out there. I am in exactly the same position you were when you posted - I am now anxiously awaiting my RAI in 3 weeks and making myself crazy in the process.

I wanted to ask how you are doing, 2 years post-RAI and post thyroid CA overall

My RAI 7 years ago was very uneventful, like what you will find most, if not all, RAI experiences in this forum. From the clothes I used in hospital, only 1 underwear and 1 t-shirt were found to be too contaminated. You don't actually feel like you had a procedure, to the point I started going close to a physicist that was measuring my radiation... he jumped back in fear for his life, and I felt like a comics character. ;-)

But regarding ThyCa, my journey has been a bit harsh. Soon after RAI Thyroglobulin levels started slowly raising, signalling some thyrodean tissue (malign or not undetermined at that point) was still there. 5 years after RAI, lung metastases - of a non-RAI-avid type - were found, and this is still an ongoing war. 

I also found that RAI dosage that was given to me, 200 mCi, is seldom recommended nowadays. So if your planned dosage is higher than 100 mCi, I would ask the MD for a through explanation of why such high dosage was chosen. But that high dosage did nothing to cause metastases, it only increased radiation side effects risk without good cause. 

And more recently, a clinical trial of a potential drug showed a low response rate of RAI compared to what most patients are made to believe. This is not to dissuade you from doing RAI; on the contrary, I believe that even a 40% response rate (which is the lower bound indicated in that trial, but the trial requirements can make that response rate different from the general population) is worthwhile pursuing. Just take the "silver bullet" speech with a grain of salt so you can follow the treatment guidelines but still be aware that sometimes it doesn't work. 

Hi ToddlerFather! Thank you for writing back. It really does help to hear about others' experiences going through the same as I am. I will be an outpatient when I do the RAI treatment, so that adds a layer of concern for me about contaminating the house - lucky my in-laws' house is close so my husband will be staying with them for the week following. He will have to drive me home from the hospital though, so he will have some exposure for the first 1-2 hrs, but the doctors have assured us that the exposure will not be any more than what we are already getting from the natural environment. I am still skeptical but I just have to keep the faith on that one. I believe I am receiving 70 mci.

I am sorry to hear about your lung metastases.  I hope you are keeping healthy and winning the war. From what I have read on most of the postings, there is a fairly high incidence of lung metastases post-thyca. And that makes me so sad because I feel like I almost have to accept that as certainty in my future regardless.

If you don't mind me asking, have you undertaken any other complementary therapies as an adjunct to the standard treatments of thyroidectomy and RAI that are offered for our type of CA? There seems to be a lot of discussion on the boards here about supportive treatments, and the opinions are as varied as can be expected. 

Thank you for responding to my post, and I do wish you well in this continued journey. We are all in this together.

RE: Thyrogen/RAI next week - extremely nervous

by butterfly501 on Sat Jun 01, 2019 09:19 PM

Quote | Reply

On Jun 01, 2019 1:27 AM ToddlerFather wrote:

On May 30, 2019 11:30 PM MommyBear wrote:

On Jun 17, 2017 11:47 PM sh1117 wrote:

Hi all,

My post is a little last minute considering my first thyrogen shot is Monday 6/19... but I'm hoping some of you can offer some reassurance/encouragment. 

I have a tremendous fear of nausea and vomitting and am very nervous about the possibility of getting sick from the thyrogen shots and/or the RAI. I've put off this treatment for almost a year due to this fear :( 

I'd appreciate it if anyone could share their personal experiences with the shots and the RAI, or offer any advice.

Thank you!

Hi sh1117!

i realize i am responding to a 2-yr old post, but I hope you are still out there. I am in exactly the same position you were when you posted - I am now anxiously awaiting my RAI in 3 weeks and making myself crazy in the process.

I wanted to ask how you are doing, 2 years post-RAI and post thyroid CA overall

My RAI 7 years ago was very uneventful, like what you will find most, if not all, RAI experiences in this forum. From the clothes I used in hospital, only 1 underwear and 1 t-shirt were found to be too contaminated. You don't actually feel like you had a procedure, to the point I started going close to a physicist that was measuring my radiation... he jumped back in fear for his life, and I felt like a comics character. ;-)

But regarding ThyCa, my journey has been a bit harsh. Soon after RAI Thyroglobulin levels started slowly raising, signalling some thyrodean tissue (malign or not undetermined at that point) was still there. 5 years after RAI, lung metastases - of a non-RAI-avid type - were found, and this is still an ongoing war. 

I also found that RAI dosage that was given to me, 200 mCi, is seldom recommended nowadays. So if your planned dosage is higher than 100 mCi, I would ask the MD for a through explanation of why such high dosage was chosen. But that high dosage did nothing to cause metastases, it only increased radiation side effects risk without good cause. 

And more recently, a clinical trial of a potential drug showed a low response rate of RAI compared to what most patients are made to believe. This is not to dissuade you from doing RAI; on the contrary, I believe that even a 40% response rate (which is the lower bound indicated in that trial, but the trial requirements can make that response rate different from the general population) is worthwhile pursuing. Just take the "silver bullet" speech with a grain of salt so you can follow the treatment guidelines but still be aware that sometimes it doesn't work. 

You are absolutely presenting the finding of one clincial trial falsely. 

That clinical study was about the experimental drug, not RAI.

RE: Thyrogen/RAI next week - extremely nervous

by butterfly501 on Sat Jun 01, 2019 09:22 PM

Quote | Reply

On Jun 01, 2019 5:19 PM MommyBear wrote:

On Jun 01, 2019 1:27 AM ToddlerFather wrote:

On May 30, 2019 11:30 PM MommyBear wrote:

On Jun 17, 2017 11:47 PM sh1117 wrote:

Hi all,

My post is a little last minute considering my first thyrogen shot is Monday 6/19... but I'm hoping some of you can offer some reassurance/encouragment. 

I have a tremendous fear of nausea and vomitting and am very nervous about the possibility of getting sick from the thyrogen shots and/or the RAI. I've put off this treatment for almost a year due to this fear :( 

I'd appreciate it if anyone could share their personal experiences with the shots and the RAI, or offer any advice.

Thank you!

Hi sh1117!

i realize i am responding to a 2-yr old post, but I hope you are still out there. I am in exactly the same position you were when you posted - I am now anxiously awaiting my RAI in 3 weeks and making myself crazy in the process.

I wanted to ask how you are doing, 2 years post-RAI and post thyroid CA overall

My RAI 7 years ago was very uneventful, like what you will find most, if not all, RAI experiences in this forum. From the clothes I used in hospital, only 1 underwear and 1 t-shirt were found to be too contaminated. You don't actually feel like you had a procedure, to the point I started going close to a physicist that was measuring my radiation... he jumped back in fear for his life, and I felt like a comics character. ;-)

But regarding ThyCa, my journey has been a bit harsh. Soon after RAI Thyroglobulin levels started slowly raising, signalling some thyrodean tissue (malign or not undetermined at that point) was still there. 5 years after RAI, lung metastases - of a non-RAI-avid type - were found, and this is still an ongoing war. 

I also found that RAI dosage that was given to me, 200 mCi, is seldom recommended nowadays. So if your planned dosage is higher than 100 mCi, I would ask the MD for a through explanation of why such high dosage was chosen. But that high dosage did nothing to cause metastases, it only increased radiation side effects risk without good cause. 

And more recently, a clinical trial of a potential drug showed a low response rate of RAI compared to what most patients are made to believe. This is not to dissuade you from doing RAI; on the contrary, I believe that even a 40% response rate (which is the lower bound indicated in that trial, but the trial requirements can make that response rate different from the general population) is worthwhile pursuing. Just take the "silver bullet" speech with a grain of salt so you can follow the treatment guidelines but still be aware that sometimes it doesn't work. 

Hi ToddlerFather! Thank you for writing back. It really does help to hear about others' experiences going through the same as I am. I will be an outpatient when I do the RAI treatment, so that adds a layer of concern for me about contaminating the house - lucky my in-laws' house is close so my husband will be staying with them for the week following. He will have to drive me home from the hospital though, so he will have some exposure for the first 1-2 hrs, but the doctors have assured us that the exposure will not be any more than what we are already getting from the natural environment. I am still skeptical but I just have to keep the faith on that one. I believe I am receiving 70 mci.

I am sorry to hear about your lung metastases.  I hope you are keeping healthy and winning the war. From what I have read on most of the postings, there is a fairly high incidence of lung metastases post-thyca. And that makes me so sad because I feel like I almost have to accept that as certainty in my future regardless.

If you don't mind me asking, have you undertaken any other complementary therapies as an adjunct to the standard treatments of thyroidectomy and RAI that are offered for our type of CA? There seems to be a lot of discussion on the boards here about supportive treatments, and the opinions are as varied as can be expected. 

Thank you for responding to my post, and I do wish you well in this continued journey. We are all in this together.

You only need to maintain a distance of 6 feet, your husband does not need to move out of the house.

Good luck with your ablation!

RE: Thyrogen/RAI next week - extremely nervous

by ToddlerFather on Sun Jun 02, 2019 01:51 AM

Quote | Reply

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/

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/

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

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/

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. 

RE: Thyrogen/RAI next week - extremely nervous

by ToddlerFather on Sun Jun 02, 2019 02:08 AM

Quote | Reply

>> You are absolutely presenting the finding of one clincial trial falsely. 

>> That clinical study was about the experimental drug, not RAI.

The two groups had RAI, so even though only had that drug, both had RAI, meaning the test group is twice as large for assessing RAI. 

The only subtle issue, which you correctly pointed out in another topic, is that the staging criteria for suggesting TT and RAI is close but not equal to the clinical trial criteria. So while tumours with spread local or distant are included regardless of size, the single tumours with no spread out of thyroid were only included for sizes of 4 cm and higher, and most tumours with 2 cm and higher end up getting surgical removal and RAI. That's why you can read in my first response in this topic an acknowledgement of this variation. 

But instead of taking mine or yours opinion at face value, she can get her doctors opinion on the trial results, available at:

https://clinicaltrials.gov/ct2/show/results/NCT01843062

While I'm not an MD, I come from a STEM background and I am very appreciative of the scientific method. I imagine you believe my conclusion on this study to be a type of fallacy called syllogism, but I postulate it's not, and I plan on having long conversations on this with my endo and my onco to see if they agree or not with both the reasoning and the data from the trial.

RE: Thyrogen/RAI next week - extremely nervous

by butterfly501 on Sun Jun 02, 2019 02:28 AM

Quote | Reply

All one needs to do is look at the professional guidelines to see the ACTUAL evidence used in the recommendation for/against I-131 ablation.

As far as I'm concerned, your ancedotal "discussions" with your doctors holds zero credibilty. 

That's my opinion.

Everyone else; YMMV.

RE: Thyrogen/RAI next week - extremely nervous

by ToddlerFather on Sun Jun 02, 2019 02:38 AM

Quote | Reply

On Jun 02, 2019 2:28 AM butterfly501 wrote:

All one needs to do is look at the professional guidelines to see the ACTUAL evidence used in the recommendation for/against I-131 ablation.

As far as I'm concerned, your ancedotal "discussions" with your doctors holds zero credibilty. 

That's my opinion.

Everyone else; YMMV.

It's curious you saying that conversations that have yet to take place have zero credibility, since they haven't happened yet... you don't know if they end up convincing me of your views on this, for instance. I'm always happy to replace bad logic with good logic, if/when it comes, regardless of authorship of the arguments. Believing in knowledge means one isn't hold up to what was once thought, but to what the reality shows itself to be. 

RE: Thyrogen/RAI next week - extremely nervous

by butterfly501 on Sun Jun 02, 2019 02:51 AM

Quote | Reply

You can't apply some sweeping claim about the efficacy of I-131 to a single clinical study where the purpose was testing an experimental drug. 

Anyone can look at the professional guidelines and see exactly which research is used to form the recommendations. And the research is far more varied than one single clinical study.

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