Can’t swallow Zelboraf

Hey Celeste, thanks so much for your response. My brother who is 35 years old had 2 skin spots removed that tested positive for melanoma 5 years ago. They removed a lymph node that was close to the spot on his neck and additional tissue around the spot on his back, both came back negative. Fast forward to this past December, he had a persistent cough that was first deemed bronchitis but after 2 more doctors visits they did a chest x ray (mid January) and sent him to the cancer center for spots in his lungs. After the full run through 5 weeks ago he was diagnosed stage 4 with a "massive amount" of mets throughout his body from superior vena cava to femur.

They immediately started radiation and 4 days after diagnosis he received his first treatment of Opdivo and Yervoy. 2 days after his immunotherapy he went in for radiation feeling like he was out of his mind and having severe anxiety. They immediately sent him to the ER where they tried to treat his tachycardia. He slipped further and further into the delirious state from what we understand was possibly due to high ammonia levels and they couldn't keep his heart rate down so he was transferred to the icu and put on a vent within 48 hours of being at the hospital. Today is day 15 in the icu, he now has a trach, is sedated on morphine, a fentanyl patch, and adivan.

He shows small signs of improvement everyday in terms of responding to medicines, for example they just gave him 2 medications to treat Tumor Lysis Syndrome and he responded very well and his kidneys have vastly improved in just 2 days. His bilirubin and sodium are high and his liver is close to being in a critical state. He was scheduled to have his 2nd round of Opdivo/Yervoy on Wednesday but his oncologists feels he is too fragile for it so they are trying to focus on him taking the Zelboraf but are really dragging their feet with giving him that too. I don't know if he is just stalling by saying he needs clear evidence that dissolving the Zelboraf and giving it to him through his stomach tube would work? His wife is going to try and convey that she and my mother are adamant they give it to him by Wednesday. You are spot on, what do we have to lose? 

Hey Rob, thanks so much for sharing your experience. We too are experiencing the desperation of Jered continuing his meds because it seems to be his only hope while he is in here. I just spoke to the director of the ICU and she is still saying that they need approval. She is vague as to who is responsible for this approval. Again, thank you for your response. 

Hi Ann, thank you so much for your reply. That would be the best outcome for us right now; for Jered to take the Zelboraf and show enough improvement to take the second round of his Opdivo/Yervoy. I can't thank you enough for giving a little validation to our mission of getting those pills in him no matter what. 

Um. Is there some way to give an internet high five, like a really really "hell yeah" type of high five? Because that is what I want to give you!! I feel so lucky to have your input on this, I just read that blog post and will probably be up all night here in the ICU binging on the rest of your work. Congratulations on being an amazing human!

"The talks" started yesterday before we got the go ahead this afternoon for the BRAF inhibitor to be administered by dissolving it and passing through his gtube. Genentech sent his oncologist a response packet containing cases of folks crushing and dissolving the pills with effective outcomes. Yay! But really, why did we HAVE to have that? Anyway, "the talks" meaning end of life hints to his wife; the nurses looking at him and doing the shaking their heads bs because all of the specialists say the same thing, "it's in oncologies court now, they are in control and will do what is best." Meanwhile, the ringing in my ears is everyone I've met in oncology having said, "we have never seen anything like this before." F***.

So tomorrow morning I will start my next mission: get my sister in law to demand that he get his ipi/nivo no matter what and more quickly than she may be comfortable with. You have given me resources to explain myself with support. Thank you, thank you, thank you. Jered would agree with you wholeheartedly and his wife will recognize that. He would high five the snot outta you too!

Chelsea