Hello again. Your information helps us all to look at the big picture as well as we can.
THe following is what we as a family have learned in a nut shell. Scans give us information on where there may be ASPS lurking. We try not to do a wait and see on the tumors appearing by symptoms. We call it search and destroy!
Typical places the tumors travel are lungs, brain and bones . However we have friends here who have experienced tumors on spines, ribs, adrenal glands and in the heart.
Finding the tumors at their SMALLEST size gives all of us time to plan to take care of them wherever they are choosing to grow.
As I understand it, your brain tumors definently your first priority.
What does your doctor have to say about Pazonib? What is his goal with this chosen drug? Does he have you on a scan schedule with your lungs AS WELL as your brain?
Tumors are typically slow growing in the lungs but in the brain they seem to be more aggressive .
In reference to your lungs anytime you have tumors that show up on scans they have become ASPS vascular! Veins equals the sarcomas highways to other parts of the body. So the sooner you can possible take care of the big tumors the better. Less tumors equals less load on the body and enables the body to fight the cancer.
Olga and Ivan have had the best luck with just performing surgeries. They have ablated a lot of Ivan's tumors. He has been fighting for along time. Over 10 years.
We have looked long and hard to find a doctor who will listen to US and not just the publications. Any one who is familiar with statics knows that if you are dealing with a small number that statistics can be skewed. So when papers are written about survival of an ASPS patient it looks pretty grime to the doctors. We ,as a family, you have chose to see the glass half full! So I hope you have found a doctor who believes that you can survive this horrible disease as much as you do!
If nothing else remember we are all here if needed for you and your family.
Much love
Debbie and family
