Tall Cell Aggressive Papillary Thyroid Cancer

[Portugal-2]

Interested in speaking with other Tall Cell Papillary Thyroid Cancer adults diagnosed in late that have both the BRAF V 600 and TERT gene.

I have had a total thyroidechtomy 2/3 para thyroid out 85 nodes removed. RAI 150. Daily radiation for 8 weeks with one day a week chemo, 6 proton therapy. Now have new tumor in brain stem area and tumor surrounding by esophagus and rooting around trachea. Both inoperable and not possible to take mor proton.

Having Pet Scan, Ct Scans of head and chest every 3 months this past year. Debating when to start TKI or not. They are hoping to shrink what is there and growing now. I would love for anyone to share their drugs TKI taken ( TKI names, dosage ,length of time and success) Please share side effects and if TKI’s changed to what that was helpful. I know everyone is different with their diagnosis and tolerance to drugs and side effects. I just think knowledge and sharing is power and helpful. Thank you in advance. Hoping to get great feedback before my decision.

Written

[Afaghieh]

Hi Portugal-2

I feel for you, but my cancer is Hodgkin's lymphoma and I belong to the forum.

Ask your consultant for research drugs which will be tested soon, if they know about it. Or search hard on the net to find out where? If you are in the UK Macmillan cancer care can help. I wish you well.

[Portugal-2 in reply to Afaghieh]

TYSM for replying!! I have researched and will continue to. Hopefully more replies. You’re in my prayers for a miracle to come your way!!