Today we met with Scotts radiation oncologist. Things are definitely not looking too good. We got to see the scan and basically his spine is lit up along the entire length. Cancer cells likely inhabit his spinal fluid as well, which means surgery is definitely not an option. His oncologists have consulted with doctors across the nation and are still reaching out to others (MD Anderson, etc). But unfortunately, Scott is an extremely rare case. First, he is pretty young for Glioblastoma, an aggressive brain cancer. Second, he is old for PNET (Primitive Neuroectodermal Tumor) which is a pediatric cancer. They originally were treating just the Glioblastoma, which is the more aggressive of the two types of cancer. Unfortunately, the PNET component is what has taken over his spine. Metastases to the spine (Leptomeningeal metastases), especially to the degree it has done to him, is devastating and rare. Nearly all cases of PNET treatment when it comes to the spine have to do with pediatric patients. So, it is basically guesswork with what could work with a full grown man. There are no clinical trials available due to the fact that his case is extremely rare. So, weve been told there are three options: 1) Do nothing. Symptomatically, his back pain will worsen. He would be looking at just a few months at the most. 2) In addition to chemo, do a palliative approach to radiation (2 straight weeks of radiation). This will minimize the back pain, making him more comfortable. No timeline estimate can really be given, but may extend his life beyond just doing nothing. 3) If his brain scan tomorrow comes back clean, then an aggressive approach with radiation is an option. They are not sure how much time it might give him, but complete cure is very unlikely with how much it has metastasized. It would be five weeks straight of radiation with chemo. He will be miserable, sick, and his cell counts will drop considerably, leaving him very vulnerable to illness. His doctors are heartbroken at his prognosis. His radiation oncologist looked defeated and wished he could have done more for him back in May. We have the utmost respect for his doctors and believe they have done the best they could for him. We wait to get the results of his MRI after his appointment in the morning to make a final decision, but ultimately it is Scotts decision on what he would like to do. I stand by his wishes 100% regardless of what approach he chooses. We have read about recommendations from friends and have gone over them in depth. His doctors are doing their best to find other options for him, other treatments, other cases. At any rate, Ill have an update tomorrow evening with his scan results and possibly his decision on what course of treatment he wants to pursue. Thank you everyone for your kinds words, your support, and your love. Mary
Posted on: Wed, 22 Oct 2014 02:04:10 +0000
Recently Viewed Topics
© 2015