Aggressive Pituitary Tumor (APA) PitNET TMZ (Temodar)

Posted by kc2 @kc2, Jul 16 12:54pm

In 2005, unbeknownst to me, I had an incurable brain tumor.
It has re-grown EIGHT times after five surgeries and two radiations.
What began as a benign macroadenoma morphed into an APA now reclassified as PitNET with malignant neoplasm. Due to its rarity (< 0.5%) there are limited studies and research.
I am 73 years old and still kicking because I am a SUCCESS STORY !
Over two decades I fought the fight and am not giving up.
In 2017, due to post-surgery complications, the easy access via TSS (Transsphenoidal Excision) is impossible. After second round of radiation in 2019 within four years the zombie returned.
TMZ (Temodar) is a last ditch effort for me. Currently I tolerated two cycles. MRI in two weeks. I hope that I will again be a success story.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

Colleen Young, Connect Director | @colleenyoung | Jul 23 3:44pm

Hi @kc2, I appreciate reading your story and your fighting spirit. I added your post to the Neuroendocrine Tumors (NETs) Support Group as well here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I'm tagging a few members like @kswilliams @jenirog70 @barbiejk @bjh369 @khauert @daphne2020 @sturns who have experience with pituitary tumors and pituitary neuroendocrine tumors (PitNET).

How often to receive temozolomide (Temodar) treatment? How are the side effects?