Bad news from the scan. She has new brain mets. The Braf/Mek isn’t stopping the growth anymore which is so weird because her last brain scan 3 months ago showed shrinkage. And she’s been doing so much better with the exception of pain in her hip joints, it’s all so shocking. Basically the oncologist said we will probably not be able to slow this freight train and need to prepare for end of life. I don’t know how to do that with my 25 year old daughter. How do you prepare your kid for end of life? What the fuck.
I’m in CA now packing her apartment and will start the drive to MA tomorrow with a friend. We meet face to face with oncologist again next Friday to explore options and come up with a new plan. She has been great communicating via phone and email and we appreciate her candor. I just expected to have better results. Ugh
You said she was on the Taf mek combo.. did that not work? I know you said opdivo and yervoy didn’t work.. is there any other treatment options?? I suppose you’ll find that out when you see the oncologist. Jesus Christ.. gamma knife radiation? Any other Mets anywhere other than the brain? I am in tears for you, keep pushing for something that could work. There are so many options.. my heart is heavy today.. I have already prayed for you. I will continue. I am her age.. so it hits home.. ryan is 27.. you are in my heart
Neurologist said that surgery would probably not make a difference. She only did one round of the Yervoy so more of that is an option but the oncologist is afraid that if we stop the chemo it will grow much faster. It’s confusing because she had shrinkage before after Yervoy and adding the chemo once stopping Yervoy. She could do both but the side effects would probably be awful again. So much nausea and vomiting last time, and GI issues.
So she IS on the chemo combo? Lower dose? 50 mg and .5mg? Ryan is on the 75mg and 2mg.. so the yervoy is the one that gave her harsh side effects? I’m sorry I’m trying to understand.. if yervoy is an option, it’s also a great drug.
Yeah I just found that out.. Ryan was suggested to stop the Taf/mek before it stops working, they would over lap them 1 week but can’t do it at the same time it’s too toxic..
She was on Taf/Mek but now on Braf/Mek. She said we could go back to the other but that it probably would not make much of a difference. Her side effects are less on this one.
dwalach, I don’t even know what to say. The Braf/Mek is not working well anymore? But they want to keep your daughter on it. What about gamma knife radiation? My cousin has glioblastoma, and he has had 2 so far. and he is now on chemo as well to slow his down. I’m sorry I don’t know that much about brain metastasis as my husband has it several places in his body, but not in his brain. Has it metastasized anywhere else? I am praying for your daughter and you. Don’t give up hope there are so many treatments. Praying when you get your daughter home and to the Dr. they come up with a good treatment plan.
I’m am so sorry to hear this news. My sister went through gamma knife and not to scare you but to help you be watchful is the one thing we learned too late is that brain melanoma Mets in particular can bleed. If she has any headaches take her in right away. Initially my sister tumors shrunk as well but unfortunately it didn’t last long.
I am so so sorry that your young child is going through this awful disease. I wish I had something profound to say that will help you all. My other sister and I had lunch yesterday and talked about our regrets and how we were so afraid to talk to our sister. I was laser focused on her care while my other sister was focused on my mom and it was a way to avoid the inevitable, in my sisters case and we avoided all the tough conversations. I wish you greater strength than we had and I will continue to pray for a breakthrough.
I always want the truth Bigsister! I did not know that brain mets could bleed and will add that to my questions for the doctor next Friday. Thank you all so much for sharing your experiences and love!
Gamma knife did work great to keep the Mets small and under control and her rupture happened the night before the second scheduled gamma knife round - totally sucked like seriously wtf I don’t want you to think it was the gamma knife.
This burden, of love and life, starts before us and goes beyond our last breath.
This temporal and very awful place you and your daughter are in right now is nearly unbearable, even from this distance, but I will stand with you, unflinchingly, because you are also not blinking.
One foot, in front of the other, and then the next, into territory unknown and far too early.
Silence, and noise, and choices, and always loving loving loving.
I encourage you to be present with your girl, as much as you can, saying the truth of love, the value of hope, asking the courageous questions, so you can together focus on what is the most important, as best as you can, for as long as you can.
I feel your pain and anguish. I lost my son to this beast almost one year ago. He was 27. He chose to do everything possible to prolong life. He did have 2 rounds of gamma knife which worked well on brain mets. Unfortunately, more brain Mets appeared so fast that gamma knife couldn’t keep up. I took his lead on the hard conversations. If he wanted to talk I would, but nothing has ever been so hard as to listen to my very young son talk about dying. He didn’t talk about it much. We spent most of our time just doing things together, talking about everything else under the sun. I treasure those conversations now, as we came to know one another in a way we never would have without this time together. The pain of facing this was the hardest thing I have ever done. Just remembering it now brings me to tears. I wish with all my heart I could wrap my arms around you and support you thru this somehow. It helped my son to keep fighting. He chose to do whole brain radiation and to do chemo just to prolong things. But he was able to emotionally handle it all by having something to do about it. For him, he couldn’t just stop treatment but I can still understand why others would. My advice to you is to follow your daughter’s lead and let all decisions be hers. If she wants to try new treatments do it. There are many out there and your daughter may be the one to respond well to them. And if she doesn’t, she may find comfort in just trying, as my son did. Support her in whatever she wants to do and then spend all of the time you can together. I was with my son every day and at every treatment or appointment and we talked and laughed plenty. After he passed, I was greatly comforted knowing I was always there and that I had done every possible thing I could do for him. God bless you. Hugs to you.
Ok. You have been awesome this past month moving your daughter, working with palliative care and pain management and providing what your girl has wanted. I'm sorry you are at this point. I know you have said that you are a tell me the story so I can deal with it kind of mom.
So sorry to read about your daughter. Much love to you💜💕💕💕. My son was BRAF positive and was on Mek and Tanifar and it shrank most his tumors, but it did not pass the blood barrier to the brain where over 40 mets grew. So we got him into a different trial with Ketruda-, that does cross this brain barrier. sadly the metastasis was too far, too fast. That was in 2015. I never accepted it- we didn’t talk about it. Arthur was only 24. I wish I had, but how? I couldn’t.
Never give up hope.
Unfortunately there are no trials that will take her with brain mets that I am aware of.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Full brain radiation and immunotherapy questions
