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| Compare this to the pictures below. It just looks nasty now. The radiologist used the word "engulfing." |
And so, we look for another treatment. My first choice would be the Anti-PD1 drug that was just approved in last couple of months. This is the drug I was getting on trial in Florida. It was helping with this tumor. It has been approved only for second line treatment. Meaning the patient has to have tried IPI (Yervoy) and the Braf drugs before insurance will pay for it. This is a serious blow. I think I heard $15,000 a month, which just isn't feasible.
So the plan is to start the BRAF drugs. They are pills taken twice a day at home. I will take two different kinds. The response rate is 75%. They work for an average of 6 months. If we can shrink this bad boy enough we could take it out surgically. If the BRAF drugs do not work we could then move onto the PD-1 drugs.
I honestly believed yesterday morning that I was on my way to a cure. This disappointment is one of my biggest yet. I keep getting so close!
As the insurance approval comes through I have a little time to make sure this is the right direction. There are many side-effects to these drugs, one that seems universal is extreme photosensitivity. Hoping to find a sunny spot to take the boys for a couple days before this all starts. I'm sure to be back in the ring by then, but on the cloudy day I think I'll just try and pull myself together. Roll with the punches, Alisa.
I'm so sorry--I keep wishing I would wake up from a bad dream. That picture is all too real. But once you are back at the fight, that cancer will wish you never left the beach. You are the toughest person I know. I love you!
ReplyDeleteOh, good grief. I am so sad! Fighting is just so exhausting! I can't even begin to imagine the fatigue and toll this is taking on you and your family! I will be praying for strength to keep up the good fight! You CAN do this! I'm just so sorry you HAVE to do this! Soak in a little sun and the love of those sweet boys...that will be good for the soul!
ReplyDeleteI am so sorry. If you do not want to take braf first before qualifying for PD1, perhaps you can try to get "pre-authorization for PD1.Tell the insurance company that you did respond to PD1 and your tumor is growing to fact to take a Braf inhibitor. Just a thought. I have been on Merck pd1 since 2011 and remain NED. If I were to get off Pd1 and had progression, I would not want to first have to take Braf, before getting PD1 again, particularly because Braf only works for a limited time. Plus you know that some of your tumors did respond to PD1. I would at least try to get your insurance to approve PD1 so you do not have to take braf. Good Luck Wendy
ReplyDeleteUgh, I can't believe it. So sorry. Praying as always. Enjoy your sunny weekend!!!
ReplyDeleteI wish I could swear on this family friendly blog, but I won't. I'm so sorry Alisa! Onward with the fight! We will continue to pray everyday. Love you!
ReplyDeleteI love you and I'm sorry! Xoxoxo forever...
ReplyDeleteI'm so so sorry. You need some more of that cherry pie. You truly are a warrior!
ReplyDeleteSending you a bajillion kisses.
ReplyDeleteOh darnit!! So frustrating. I've been reading along ever since Sonja talked about you when our kids were in treatment at PCMC back in 2011. Oh, how we are all rooting for you! We will keep praying.
ReplyDeleteI feel sick for you, so sorry for such disappointing news. I have been thinking of you so much. I was hoping this would be the final blow to get rid of your stupid tumors forever. You are so close. If anyone can keep fighting it's you... you roll with the punches better than anyone I know. So sorry Alisa. Hope your weekend was full of sunshine. Lots of love.
ReplyDeleteHi there! I am a first time visitor to your blog and my heart broke while reading this news. I am so very very sorry. I have been living with an ultra rare disease all of my life. It has no cure. I believe in miracles. Sending so much love and light your way.
ReplyDeleteThinking so much of you, Alisa. Sending all our love.
ReplyDelete