Tall Cell Agressive 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.

[JOY2THEWORLD49]

Hi

Oh Hell, I feel for you.

Having a stroke Sept 2019, with rapid AF and 4 days having a Neck Scan for carotid arteries, the lass said I had a shadow on my thyroid.

Luckily I had Papillary Cancer - slow growing - I had no idea that there was one like yours.

The surgeon removed total thyroid and 12 lymphs on right. 2 were already affected.

I refused RAI and Suppression TSH directed by Endocrinologist. Surgeon agreed that there was low risk.

I'm having my 4th year Neck Scan next month. Because I had 2 lymphs affected I will have one yearly and its reassuring.

Did you get AF over it?

My prayers go out to you. The anaesthetist resigned as his thyroid cancer which had spread when he had his thyroidectomy. He had 2 rounds of RAI. It has returned after 15 years!

Take care and HOPE.

cheri JOY. 75. (NZ)

[SmartGreekGirl]

There are support groups on Facebook and Inspire for tall cell and Radio Active Iodine Resistant Thyroid Cancer. I would sign up there so you can talk to more people.I am taking TKI’s and they are helping.

[Pepekins]

I had an op for papilliary cancer about 23 years ago but did not have to have anything other than RAI, all well. Not trying to be weird however a book called Science & Health by Mary Baker Eddy kept my spirits up when I was frightened, and still does! With Love.