Anyone non-avid for RAI?

For those of you non-avid for RAI, can you tell me what your treatment has been since losing avidity for RAI?
How long have you been non-avid?
What treatments have you had?
Is there anything you wished you would have done/not have done when you found out non-avid?
Have doctors gven you any indication in prognosis since becoming non-avid?

Thanks for any replies/information. I am nonavid - first RAI did not work, and I am feeling anxious about it. My stimulated Tg is relatively low, but when I start thinking about the future and not living in the present I start feeling depressed and highly anxious. I know things could be much worse for me, so I want to appreciate where I am now, but I get scared thinking about the future. I am still learning how to manage my fears/anxieties and working on my mental state. Blah - I am a mess!

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Hi RayeRaye, i have been non avid since 2006, Had TT and RAi in 2006. There was uptake on the initial ablation scan. The 6 month uptake scan was clear, i was told the intial ablation dose had killed off any remnants. For 4 yrs i was having 3-6 monthly checks with bloods,because the TG was always undetectable i was not given any other scans etc over the 4 yr period.
In Nov 2009 i found a lump in my neck, went to see the oncologist who said he wasn't too worried my TG was still undetectable, so he arranged an ultrasound scan for the end of January 2010, the results were the Papca was back (or never gone). I was sent for MRI and CT, the results of the CT were not great, i have multi nodules in both lungs.In May 2010 I had a radical right neck dissection, followed in the September by external beam Radiotherapy.
I still have multi nodules in both lungs which thankfully are stable.
Since the EBR my neck is also clear so far, i was told that the prognosis is no worse than anyone without lung nodules. They also told me the lung mets could have been there for years.

Hope this helps, i have been told it will now be treated as a longterm disease i will never be cured.

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With the hurthle cell variant, we always knew that the cancer was likely to be non-avid or to speak medically RAI refractory. The problem 10 years ago was the lack of an alternative. This meant withdrawal and low iodine diets followed by a negative WBS. Not only was that a waste of time but withdrawal merely spurred the cancer on and spike the Tg. levels. Finally, a 70 mci dose resulted in a positive scan but did not otherwise eliminate the tumor. The final try was dosimetry and a 512 mci dose which had some effect on the TSA machines but did little to take care of the tumors which were in the lymphatic system of the chest.
Anyhow, there are a number of clinical trials using the new anti-tumor drugs. Some trials attempt to sensitize the cancer cells to RAI; others target tumor cell growth/death and "angiogenesis". I have been in 2 trials and am now trying a drug that has been through its trials. These drugs are used for a number of different cancers(renal, colon, medullary thyroid, etc.). Typically they target the natural cell processes that cancer exploit to grow and spread including attracting blood vessels, preventing natural cell death, rapid multiplication, etc. There is also investigation into genetic properties of cancers. The BRAF mutation was the target of one of my trials but hurthle cells to not have it(papillary cancers do). I would suggest you go to the site, clinicaltrials.gov and search on metastatic thyroid cancer and read up on what is available. Good luck.

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Hi kazzmo- just curious too what try considered Undetectable in the UK? What was your tg with the lung modules and do te test for antibodies too?
@ raye raye it is so hard not to e anxious. Thankfully your t is not too high and they can monitor you closely now for changes. U see dr ain correct? Did you have a chance to share how u feel with him? Just curious what his feelings are on this. Many Hugs

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Papillary and follicular are the only two thyroid cancers where Tg may be useful. But not all pap/fol produce Tg and in the case of non-iodine avid tissue, I would have to think there is a possibility the tissue is no longer well-differentiated (producing Tg) but has moved towards the poorly differentiated stage.

the less tissue looks like thyroid tissue, the less useful RAI and Tg become.

sad to read your situation raye-raye, but as you can see from Kazzmo, there is still much hope and good living :))

billhurthle brings up an excellent point about BRAF, I think they are using nexavar in some clinical trials to see if it will inhibit tumor growth in papillary/BRAF + tissue.

excellent thoughts to everyone! :))

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Hi here in the UK 2.0 is classified as undetectable. Yes they do the antibodies test which come back <20

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Wow kazzmo that's interesting. Are they positive that your Lung nodules are from Thyca and not something else?

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Hi Raye Raye

It is hard to keep focused on the now. Remember today is all that anyone has. I recently bought a book "Breaking Murphy's Law: How Optimists Get What They Want from Life - and Pessimists Can Too". It is pretty helpful so far! Good luck with everything and try to stay positive.

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They are adamant they are, but it is too dangerous to do a lung biopsy. I had a TG level taken in January after being off meds ect for a body scan and it came back at 32.

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Raye raye- really sorry that you are anxious about the future. You have every right to be, but don't let that consume you. On Facebook, there is a page dedicated to thyca patients: thyroid cancer 411. I have seen individuals discuss your concerns as there are members who are non-avid. It is an informative and supportive site as well.

Wish you all the best!

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Contrary to six years ago, there are now a number of materials available for those with thyroid cancer mets that do not pick up RAI.
More clinical trials are coming out all the time. There are also medications available by prescription. I too have mets that will not pick up RAI, I consider myself to have a chronic disease with bone mets that so far fortunately do not cause pain or other symptoms but they are found by PET scans. I have recently started in a clinical trial phase 1 so we will see what the results are.
My thyroglobulin has been rising since 2006. I took Nexavar as an 'off label use' - it was prescribed for my thyroid cancer;
for more than three years and it kept my mets stable so quite some time. There is hope!

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What does avid and non-avid mean?

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tissue 'soaks up iodine' (avid) or tissue does NOT 'soak up iodine' (non avid).

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Will a thyroid tumor show up on a thyroid scan if it is non-avid for iodine?

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nope, not an RAI WBS.

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Thanks for all thebthoughtful responses. Sorry for the terrible typing, as I am trying to use an iPad
Kazzmo, I am also hoping to just deal with a chronic conditon that can be managed for a long life
hurthlebill thanks for the link, I think I have been on there but need to spend more time. My doc said no more med withdrawal so I am happy to not be growing more while being off meds.
Dp189 thanks for the book recommendation, always looking for great books!
Jani72 i really appreciate all the well wishes and work you do to respond to everyone on this site.
Las4 I haven't talked to ain much at the last visit when I found out I was not able to be treated with rai, I was hypo and not very mentally together. He told me to live for today. He is neither a hope nor a doom kind of guy. More take it as it comes.
Txindy thanks for the well wishes and the. Facebook link
Thyca94 I am son thankful for the advances that have been made so there are some alternatives. Glad to hear nexavar worked for you for three years. I would love ton keep delaying growths until they find other drugs to use.

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