Germinoma

Brandibaggett

Hello! My son was recently diagnosed with 2 germinomas...one on his pituitary gland and one on his pineal gland. He was 10 at diagnosis on 10/2017. The symptoms that led us to the ER were a headache and vomiting. After a CT scan we learned about the tumors and were sent to Vanderbilt Children's Hospital. 

He is now 11 and has finished 4 rounds of chemo. After chemo, the tumors are basically gone, but we must still do the 4 weeks of radiation. After research and reading discussion boards, I am concerned for his long term health and wellness. We have been told that he most likely will always be on Levothyroxine, Hydrocortisone and DDAVP and I can live with that if we can cure this cancer. But, I do worry with the long term issues he will deal with. I am looking for people who have had similar issues/diagnosis and have these questions for them....

1. Anyone diagnosed before puberty that can give me info on how you are doing now?

2. What issues or side effects do you have?

3. Are there any survivors of this who can or cannot have children?

4. If you take these meds, how does it affect your adult life now?

5. What side effects of radiation did you have? Did it cause you to have permanent hair loss?

6. Did it affect your cognitive or learning abilities?

7. Were you given growth hormones and did it help?

I would love to hear from anyone who can answer any of these questions or has had this diagnosis or similar issues. I am just looking for any information/good news I can find. My son has lots of questions and I am struggling to find answers for him and us as his parents. If you do not feel comfortable responding here, you are welcome to email me with any information you feel may be helpful.

brandibaggett531@gmail.com

Thank you in advance for any information or help

Brandi Baggett