looking for other germinoma brain tumor survivors

abarash

jvd127 said:

Germinoma Survivor

Hello,

I am new to this site, however I wanted to reach out. I am a 2 year survivor of germinoma. I have my 2 year check up this week. I was diagnosed back in June 2015 after having symptoms of double vision and vertigo. I went to Penn Hostpital in Philadelphia where I was diagnosed after the neurosurgery team took a biopsy from my tumor. I then received 5 weeks of proton therapy at Penn. I was told I was in remission shortly after that as the proton therapy worked. I am now turning 30 this week. Please feel free to reach out to me if you have any questions. I was lucky in that I am a survivor and did not have to receive any chemotherapy. I have experienced memory loss issues, specifically short term memory since the treatment. Thank you everyone for sharing your stories and you all are in my thoughts and prayers. Thank you.

Hello,

Hello,

I stumbled across this site looking for new pineal germinoma information. After reading some posts from parents of newly diagnosed and those diagnosed younger than me, I remember how I felt and wanted to reach out to encourage positivity..

I was diagnosed with a Benign Pineal Germinoma in 1998. I recieved 6 weeks of radiation treatment at 52Gy. My neurologist told me that I was lucky twice. Once for the rarity of the tumor, and twice because these types of tumors are so radiosensitive.

The 6 weeks of radiation did the job!

I do also suffer from some memory issues, temporary loss of hair in the treatment area, and long lasting vertical diplopia. But these things have become the new normal. When I renew my prescription every 2 years the prismatic adjustments are minor and I am more concerned about the need for bifocals. :-) As for the memory issues, what was I saying?...

Some of the memory loss problems can be alleviated by making lists and notes and alarms. With cell phone it is cake! I don't have to carry around a notebook anymore! 

 

The good news is, that was nearly 20 years ago. In the meantime I helped raise my two daughters, kept continuously employed in technical positions, and have been healthy.

 

Good health to those of you healing from this.

Adam