Any experience with Superior Vena Cava Syndrome (SVC)?

[HospiceRNCM]

I need some advice about dealing with SVC, as this is my first patient with the syndrome.

I have a younger patient in my caseload who is on for a clotting disorder and it has been obvious that he is in SVC or Superior Vena Cava Syndrome. Three months ago he began developing severe facial edema and was started on Coumadin, however developed a DVT and probable PE, and is now on daily Lovenox injections.

His symptoms include:

Facial edema, worse upon waking up, improves throughout the day.

Redness around the eyes.

Orthopnea and SOB with ambulation.

Increasing abdominal distention and MAC.

Massive amounts of venous circulation to his chest.

Episodes of Nausea & Vomiting.

Syncopal episodes 1-2 times a month.

He had an episode where he became flush and purple/gray in the face when put in the prone position, vitals deteriorated but improved upon position change and oxygen.

Since I have no first hand experience with SVC, any accounts/ experience that you can share would be helpful, especially about disease progression and death. I guess I am looking for what to look for and what to expect as this is a very difficult situation for all involved.

Thanks in advance!