15 year old ASPS patient from Denver CO - Dx 2013

[Deborah]

Bonni,

As always, thank you for your encouragement and support. The tumor at the base of the skull was an extension of the sinus tumor-so they are kind of one and the same.

[D.ap]

Deborah

Happy 18th birthday to your son!
I love it that he's planning college and continuing to do weather the keytruda well.
All great news!

How's the spinal tumor being affected?
Can't remember how often PETs are performed?

Love
Debbie

[Deborah]

Debbie,

PETs were performed 9 weeks after first treatment and then every 12 weeks.

Also, I read your post about potential side effects and wanted to share that bloodwork is evaluated once a week and a physical exam every three weeks.

[Deborah]

We continue to have success with Keytruda! Each scan shows a slight reduction in the size of the tumor in his sinuses and stability in the lungs. He will continue infusions every 3 weeks and we now scan every 4th treatment with weekly blood tests. His energy level is good and he has never looked better. We are thankful for his continued success on this treatment, as he just graduated high school and will be off to college in August. As we celebrate this milestone, I grieve for those families who have lost a loved one to this disease. They are always in our thoughts and prayers.

[D.ap]

Hello Deborah
The news of your son having continued shrinkage in the sinus area is truly good news, as well as stability .

Are the radiologist comparing scans from 2013, of the lungs , as I believe that's when your soon was dx'd ?
Along with CT scans ,are ct pelvic scans and a brain MRI
on a schedule?

Our son is doing really well too on Opdivo . Aches ,sleep disturbance but appetite is good and energy levels great .
Are their any noticeable side effects with Keytruda ?

It's great to hear from you
Love
Deb

Ps
I believe I incorrectly indicated on a prior post , that your son had a spinal tumor .