Father just diagnosed stage IV brain metastasis – Advice needed – Southern California

Hi Emily,

Your dad's condition certainly sounds as though he is in a very tough spot.  Dr. Omid Hamid is an internationally recogized melanoma expert as is Dr. Antoni Ribas:  https://www.uclahealth.org/antoni-ribas  

This primer that I put together may help you gear up on melanoma treatments so you can understand the jargon and treatment options when you have additional meetings with your dad's docs:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Hang in there.  I wish you and your dad my best.  Celeste

Emily, I have heard nothing but good things about Dr. Hamid and Dr. Ribas, my husband's oncologist, is fantastic. Best of luck with the appointment at Angeles Clinic. In the meantime, you may find additional hopefulness in reading up on Jimmy Carter's experience with brain mets. ~ Carol

He had done whole brain radiation and immunotherapy before he got on the braf therapy. He had to stop the immunotherapy after 5 infusions due to colitis.

Keep us updated on what Dr Hamid said.

Annie

I was diagnosed with stage 4 last June and had brain swelling, spots on lungs, ribs, etc. I lost my balance and couldn’t walk, had blurry vision, and in general was a mess.  First thing they did was give me steroids to reduce swelling, then brain radiation, and then started immune therapy (keytruda).  After two months I started to feel better and began physical therapy to learn how to walk again.  I received the results of my 1st pet scan after immune therapy and I was responding positively.  I guess my point is that it was two months of hell not knowing if I was going to live or die and really the doctors didn’t know anything until those pet scan results after immune therapy showed what was happening to the cancer cell throughout my body.  Hang in there!

Your family is certainly in the "oh my God what the hell is going on?" suck stages. My only experience in the so cal area is at USC. My entire treatment team is there. Neurosurgeon, gamma team, radiation oncologist, medical oncologist, dermatologist…. and a few additional scattered docs. I would strongly recommend an appointment with Dr Eric Chang at USC. He is chair of the radiation oncology department and co-chair of the hospital's gamma unit. His credentials are as high as you will find in this country, and definitely stand above anyone else in California. His communication skills are also above par. His specialty is with cancer in the central nervous system (brain, spinal), including metastasis. He has plenty of experience with melanoma metastasis, treatment, and response. For the best in "brain care", Dr Chang is the guy. Dr James Hu is my medical oncologist. His specialties are sarcoma and melanoma. Again… a very intelligent go getter with lots of experience in handling melanoma cases. I know some of USC's patients also see Dr Naveed Wagle, who is a neuro-oncologist. All three of these gentleman are in close communication with one another, for a great "team care" concept. I also know other patients who see Dr Chang at USC for "brain care and maintenance" but who see Dr Steven O'day for medical oncology and overall treatment. Best wishes for your family and your dad during this most terrifying of times. Even if you opt for doctors outside of USC for general treatment… I can't recommend Dr Chang highly enough for management of your dad's brain.