› Forums › General Melanoma Community › Found METs in brain
- This topic has 20 replies, 15 voices, and was last updated 4 years, 11 months ago by Gene_S.
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- May 24, 2019 at 3:16 pm
Well,
This was not what I was expecting… I had an MRI in January and it was all clear. I had one yesterday as i have been a little disoriented. They found over 20, some inflamed and all throughout.
They want me to start full brain radiation next week.
I am so …..
Don’t even know the words, scared, mad, confused…so at a loss right now
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- May 24, 2019 at 3:52 pm
I wish this had not happened to you. I hope the radiation helps. Melanoma can be a horrible disease. I would be frightened, if I learned I had brain cancer. -
- May 24, 2019 at 3:53 pm
Tyais,
So very sorry for this news. But you can do this. Prayers being sent your way. -
- May 24, 2019 at 8:51 pm
Ouch. I’d be on the floor, so if you’re not there, you’re doing better than I would. I’m hoping the radiation works for you. -
- May 25, 2019 at 2:17 am
Oh tyais, I’m so very sorry that is a shock, but I’m praying that radiation works quickly and thoroughly. We are all behind you on this. Many many hugs. Visualize zapping those Mets. -
- May 25, 2019 at 4:55 pm
Hi Tyais – I am so sorry that you are now having to deal with this kind of progression. I want you to know that my sister’s experience was very similar – a clear MRI in Jan. (2016) and a brain full of mets by May. At that point she’d had 2 rounds of ipi/nivo after being taken off Taf/Mek. She did undergo whole brain radiation and was back on Nivo asap after that. Her brain has been clear for over 2 years now and she is coming up on 2 years NED period!!The radiation treatments were not difficult to take – there was some swelling involved (for her and I believe for most – it’s pretty common) and they usually treat it with steroids. Hopefully, your liver enzyme count will resolve and you can get back on Nivo quickly. The studies definitely show that immuno and radiation in close proximity have a greater effect together than either alone and thank goodness you were able to get in all 4 ipi/nivo combos. Celeste has lots of new info also showing that immuno and radiation simultaneously is absolutely the best way to proceed if possible, so definitely talk to your docs about the amount of steroids they might give you.
I just want you to know that you can do this Tyais, you can get through this and get those little monsters out of your head for good!!!! I wish you the very best results and will be pulling for you, as everyone else here is!!! You take care!!
Barb
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- May 25, 2019 at 6:42 pm
Aw shoot! or shit if ya dont mind me cussing! Im sorry to hear this right along with you, i have a PET scan coming up wich iv been avoiding for over 2 years now, God only knows what theyll find (fingers crossed) im Mike by the way, stage 4 and in my lungs, currently on Opdivo… -
- May 25, 2019 at 11:45 pm
Oh, Tyais. So very sorry. Melanoma sucks great big green stinky hairy wizard balls! Yes, Barb is correct. There is tons of data that notes when immunotherapy and radiation is combined (and you have certainly had plenty of immunotherapy lately!!!!) the positive response is greater than when either radiation or immunotherapy are used on their own. You can find lots of articles on my blog (use the search bubble) if you are interested. I know you are tough. Hang in there. I will be holding you in my heart. Yours, celeste -
- May 27, 2019 at 6:05 am
Tyais, you’ve got this! Zap those buggers, kick this stuff to the curb, and come back and post that you are NED! That’s how I’m planning to envision this going down — we’ll make it happen through positive vibes! -
- May 28, 2019 at 10:21 pm
Tyais
I’m so, so sorry to hear you’re news, been away for 10 days before starting another trial and everything changes………. This disease sucks big time, things change so fast, argh!!!
Direct that anger you must be feeling and good luck this weekMy thoughts are with you
Tony
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- June 10, 2019 at 8:52 pm
MEET KIM MARGOLIN, M.D.: LEADING THE FIGHT AGAINST MELANOMA – AND WINNING
CURING METASTATIC MELANOMA TO THE BRAIN
“My own particular interest and passion is the treatment of melanoma when it’s metastatic to the brain, which has a very high incidence,” said Margolin.
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