tall cell: Anyone out there with tall... - Thyroid Cancer Su...

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tall cell

kri312 profile image
10 Replies

Anyone out there with tall cell who can give me hope that this can be managed???

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kri312 profile image
kri312
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10 Replies
SmartGreekGirl profile image
SmartGreekGirl

I am taking Lenvima and am doing very well.

kri312 profile image
kri312 in reply to SmartGreekGirl

Could you not have surgery? RAI? Or why did they put you on this? Glad you are doing well!

SmartGreekGirl profile image
SmartGreekGirl in reply to kri312

I had to have surgery. Both Rai treatments failed. This is a targeted therapy that is working.

kri312 profile image
kri312 in reply to SmartGreekGirl

I do understand that rai only works 70-80% of the time so am anxious to see if it works for me and of course to get that initial scan. I’m glad it’s working and nice to know there are other options ! Stay well and thank you for sharing . How long have you been dealing with this all!?

SmartGreekGirl profile image
SmartGreekGirl in reply to kri312

Sine 2016.

kri312 profile image
kri312 in reply to SmartGreekGirl

That gives me hope :)

SmartGreekGirl profile image
SmartGreekGirl in reply to kri312

Good!!

kri312 profile image
kri312 in reply to SmartGreekGirl

great report from endo yesterday on pathology....he told me I'm going to be here a long time!

Portugal-2 profile image
Portugal-2 in reply to kri312

I was diagnosed with Tall Cell Thyroid Cancer in 2014 very malignant and aggressive. 3 Surgeries, RAI non avid, Radiation, Chemo and proton therapy. Masses in lungs showing activity now. Brain stem tumor growth slowed down with Proton therapy. Have BRAF 600V and TERT mutations. So very aggressive due to TERT.

SmartGreekGirl profile image
SmartGreekGirl

I am taking Lenvima also and doing well.