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ToddlerFather's Message Board Messages

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On May 24, 2019 1:30 AM nwerle wrote:

both papillary and follicular cancers have a more than 98% cure rate

- Some of those could be left alone and die of anything other than thyroid cancer, due to slow growth. NIFTP is the poster child for this. 

- Some of those will have a cure due to thyroidtectomy. Most of the cases, but I will defer to a clinical trial that looks into this specific hypothesis. 

- And some of those might have a cure due to RAI. The point here is that RAI is not as a strong contributor to the overall cure rate as once thought. 

On May 23, 2019 10:01 PM butterfly501 wrote:

The clinical trial inclusion criteria was specifically for "Differentiated thyroid cancer Tumor >4 cm, or Gross extra-thyroid extension, or 1 lymph node >1 cm, or 5 or more lymph nodes of any size Previous thyroidectomy Must be able to receive radioactive iodine therapy Must be able to receive Thyroid Stimulating Hormone suppression"

This clinical trial does not apply to ALL cases of thyroid cancer.

Most of the conditions are the same that guidelines prescribe Thyroidectomy. There are a few differences (like >2 cm x >4 cm) so this could make for a higher share of patients, like 50%. Yet it's still a less than stellar outcome. 

But if someone is willing to find tier divisions among patients in order to do a proper calculation, I am all ears and spreadsheet. 

On May 23, 2019 7:57 PM nwerle wrote:

your statment has no basis in fact

The basis is available in the clinical trial results... have you read them ? You know that such a clinical trial follows a strict scientific protocol and this is one is performed by a leading researcher in the field, right ? 

RE: What's the odds?

by ToddlerFather - Yesterday at 2:40 AM

I'm pretty sure the forecast they gave him is wrong. The reason for that is all odds and survival rates are based on long-running research cycles, and most of those were based only on conventionak chemoterapy (citotoxins) and radiotherapy. 

What is available now include targeted therapies, sometimes also called chemoterapy and immunotherapy, and some initial forms of precision medicine based on specific mutations and characteristics of one's tumors. 

But there is no medical studies that ran long enough to incorporate the effects of those developments into survival rates... so he might live longer than 5 years. Or not last another year... but whatever he goes through, isn't something that can use the survival rate models that are currently available. 

Some may find comfort in not knowing and having a chance; some might prefer predictability. But regardless of preference, the fact it is unknown in the current medical technology stage. 

Last year Astra Zeneca had already conceded that Selumetinib, one drug in their pipeline, failed to provide a response for those that took it besides doing radioactive iodine (RAI). 

The complete results took longer to be published, but they are now available at:

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

What I found interesting in the results is not that there is no meaningful difference between Selumetinib and Placebo, which they already said, but the percentage of those where RAI did provide a response: it is close to 40% in all cohorts. 

This is much less than what I thought happened, and makes Thyroid Cancer a not so easy to handle condition as it is usually said. The vulnerability to iodine is not as effective, although RAI selectiveness is still much better than other treatments. 



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. 

One prospective life insurance company asked for a medical report. I went to a clinician that asked blood tests and discovered I had diabetes. I was referred to an endo, that as part of her usual practice felt my neck and said the thyroid seemed enlarged, US showed a nodule in the right half. US with FNA indicated FTC. 

[ This phase ends with two surgeries to remove both halves, a biopsy finding of FV-PTC and RAI ]

For years, TSH kept raising with nothing visible in US, WBS or PET-CT. At one point PET-CT was able to confirm lung metastases, with WBS confirming them to be non-RAI-avid. 

On May 04, 2019 7:45 PM KimmyAnn wrote:

Interesting,  9 months later? So far, I still feel fine for the moment and hope it stays that way!

Yes, but it got back to normal 3 months after. 

So, if pregnancy is in your plans, you might want to postpone them for a year, even though this effect on reproductive cells is only documented for males. 

I got a drop in sperm count 9 months after the ablation, but other than that and the feeling I was Spider-Man, no side effects. 

On May 02, 2019 4:19 PM Shayanne wrote:

My only choice is the biopsy with the endocrinologist for now due to my insurance. I found this article that says 1 in 4 thyroid biopsies are now done by endocrinologists. I guess if I'm not happy with the outcome I can change insurance during open enrollment this year.

https://www.mdedge.com/endocrinology/article/136555/pituitar y-thyroid-adrenal-disorders/one-four-practitioners-doing-fnas"" target="_blank" rel="nofollow">https://www.mdedge.com/endocrinology/article/136555/pituitar target="_blank" rel="nofollow">https://www.mdedge.com/endocrinology/article/136555/pituitar

The remaining question then is whether it's your endo's first FNA or if he or she is experienced enough for you to feel reasonably comfortable. 

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About ToddlerFather

Patient
Thyroid Cancer
After Treatment, Alternative Treatments, Biotherapy, Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Diagnostic Imaging, Diet, Emotional Support, Genetics, Hormone Therapy, Image Enhancement, Insurance, Lifestyle, Local Hyperthermia, Massage Therapy, Naturopathic Medicine, Photodynamic Therapy, Physical Therapy, Radiation, Side Effects, Spiritual Support, Supplements, Surgery

I was diagnosed with Thyroid Cancer in 2012, had 2 hemithyroidectomies and was hopeful that I would make a full recovery. After radioactive iodine there was still traces of Thyroglobulin with no findings in PET/CT, until end of 2016, when I was diagnosed with lung metastases. Genomics testing indicate NRAS mutation, and let's see what can be done to fight this formidable foo.
After receiving LDN (Low Dose Naltrexone) and High Dosage Vitamin D, the exponential growth curve has turned to a slow decline, showing incredible results of this very simple, cheap and effective treatment.
Now adding alpha-lipoic acid to the combo, but it's soon to say if it helps or not.

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