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Help with tall cell Thyca

Posts: 3
Joined: Jun 2012

Wel after 8 months of thinking I had pure pap Thyca I had my slides sent to MSK. I had a unifocal 8mm tumor just pap Thyca no extrathyroidal extension or vascular invasion however I had 38 LN removed. 7 positive and two had TCV in the lymph nodes. All I've read are bad things. Right after TT in sept 2011 my tg was.36 and no antibodies with a TSH of 4.1 . I had RAI in feb and my feb and may bloods are tg <.2 and no antibodies. What is the possibility of more metastasis and can this be cured? Thank you in advance and I appreciate the help

Posts: 37
Joined: Dec 2012

Unfortunately there is no cure for this type of thyroid cancer.  I went to MSK twice for consultations with Dr. Ho and they recommended Nexavar or Zelboraf - both are chemo pills (very toxic) and are typically prescribed for other cancers - kidney and melanoma.  My thyroid cancer has spread to the lymph nodes around my esophagus within my chest.  Cannot perform thorasic surgery - too many risks involved and long term complications can arise.  My oncologist in Pittsburgh initially prescribed Zelboraf - my tall cell variant is also positive bRAF mutation, which unfortunately promotes faster growth of the cancer.  Melanoma patients that have the bRAF mutation is prescribed this chemo pill, although the results are mixed.  I had to come off of it after 5 days due to severe reactions.  I was then prescribed Nexavar and was on it for 2 weeks before another bout of severe reactions and then stopped the Nexavar.  Ended up in the ER with both drugs.  Just finished up 6 weeks of radiation and the lymph nodes have shrunk and my antiodies have significantly decreased.  There is no data available for the effects of radiation, therefore I had to fight with my insurance company to cover the cost.  As you probably know, TCV is resistant to the typical RI 131 treatment.  MSK was in the middle of a clinical trial, taking a chemo pill (name unknown) to make the TCV more receptive to the RI 131 treatment, although during the Phase II, they stopped the clinical trial - reasons unknown.  Unfortunately not very much money has been available for further research with this type of cancer since it is a rare occurence.  The AMA published an article in June 2013 siting there is no specific evidence to determine the mortality rate with this cancer.  This article was based on world-wide patients with this type of cancer.  I hope this info helps.

Thanks, Bill

Posts: 2
Joined: Apr 2018

Hi, Bill!  I wonder how you are doing? Hubby has TCV too. 

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