Turning Point Time

My brother, Jered, 36, is stage iv with a very large tumor burden (as of scans Jan 24) to his liver, lungs, kidneys, adrenal gland, some bones, and superior vena cava. He received 9 rounds of radiation, 1 round of Opdivo/Yervoy, and is now on Zelboraf & Mekinist.

On the day of his last scheduled and 10th round of radiation, 2/2/18, he was sent to the ER for tachycardia and anxiety. Just over 24 hours later he was sedated and on a ventilator in the ICU. He stayed in the ICU for 36 days. His organs were failing, they put him on all the same drugs Hospice would give to someone who is dying. All of the specialists said he was untreatable and oncology needed to see that too.

We pushed hard on oncology to try Zelboraf; when they finally agreed they called it a hail mary. After 4 days of him getting Zelboraf dissolved in water and pushed through his gtube, Jered bounced back. They then started giving him crushed Mekinist through his gtube as well. 19 days after his first dose of Zelboraf he was out of the ICU and swallowing his pills on his own. He stayed on the hospital floor for a week and was transferred to a rehabilitation hospital on 3/21/18.

Jered has not had much success at the rehabilitation hospital. He has actually lost weight while there and had a bout of severe delirium that lasted 5 days. His labs are still on the up, although bilirubin is 2.3, and he doesn't have any pain. His delirium incident seemed to set him back drastically. This Wednesday, 4/4/18 we will take him to his first outpatient oncology visit since his time in the hospital, then 5 hours north to our parent's house. We will have home health visits 5 days a week for physical therapy and our mother has outfitted their home for his needs.

We all know Jered needs to see a melanoma specialist at an institute, I previously contacted Dr. Lee at Northside in Atlanta, so that is an option. He has not had another scan, other than a head CT when he had the delirium episode, which came back clear, so we do not know if the inhibitors, radiation, and/or Opdivo/Yervoy worked any magic. I tried to press his oncologist to give him another round of immunotherapy while still keeping him on the inhibitors, but he said it was not FDA approved and he could not.

I know the Z and Mek stop working at some point. I am struggling with the next step for Jered. Do we move him to Florida or Texas to become a patient at Moffit or MD Anderson? Do we just keep up with the Zelboraf and Mekinist until it stops working and then hope he has time to receive another form of treatment? Or can we try immunotherapy again to see if that works then go back to the Z/Mek if needed? Really which is better? I understand he is incredibly lucky to be alive, should I push this or just celebrate his being with family and in good spirits? 

Can you just go to any cancer institute and become a patient? This is the first time really since Jered's diagnoses that we have control. Any and all insight is welcomed and appreciated.