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Crap now I have a brain met...need some info please

Crap now I have a brain met...need some info please

Posted By
DoubleTT
2/11/2020 10:38pm
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Replies: 15

Melanoma second metastasis now. First met was to T12 spine did SRS and then adjuvant Nivo for 12 months. 3.5 months later as of this week I have a 6mm tumour on the periphery of my left posterior temporal lobe.
Docs want me on ipi/nivo combination...at the same time SRS with Gamma Knife or craniotomy. I will know Friday full plan. my question is do you have a certain size of lesion for a craniotomy? I am NRAS which is bad I know . So is it better to zap it or take it out ? My met to my T12 spine was zapped successfully. I guess brain Mets are a whole new issue when it comes to treating them? Here in Canada you go to the Brain Mets Clinic at Princess Margaret Cancer Centre and get a second team that just focuses on the brain mets. What am I to expect? ugghhh...

Double TT- Toronto Canada

I just had my first clean brain MRI in three years. The decision to have a crainiotomy is usually based on size, location, side effects, you may have etc. I can’t predict what they will say. But usually it will still be followed with radiation, like 1-5 doses. Try to avoid reading up on brain radiation.

Hi Julie
I'm hoping because it's still under 1cm they will use SRS with the combination immunotherapy. Yes reading about brain mets is scary...uggh. But I feel more n control knowing all of the options and there risks...appreciate your reply Tracey

<p>Double TT- Toronto Canada</p>

If you have up to 18 spots (smaller than 2.5 cm) in the brain, radiation oncologist would do it using a gamma knife. The neurosurgeon said that once the spots are greater than 2.5 cm, standard treatment protocol calls for surgery plus radiation. Radiation of the entire brain is used only as a last resort.
Hope this helps.
Melanie

Thanks Melanie...after reading more about criteria they will use the gamma knife...they did SRS to my t12 so I'm now sure it will be the Gknife. Really hate all of this so much uggh

<p>Double TT- Toronto Canada</p>

Hi DoubleTT, here are two presentation from last year talking about the changing landscape in treating brain mets featuring two different Oncologist from MD Anderson, Dr. Davies at the 24:32 min mark of second video and Dr. Tawbi and Dr. Jason Luke of Hillman in Pitsburgh in first video. https://www.youtube.com/watch?v=gDu3x9xhH-U https://www.youtube.com/watch?v=wwup6wOizdo

hello Ed
This information is excellent. Thank you so much it makes me feel more confident that I must be on the combination therapy. My docs also old me about their research that SRS to my spine and now my brain must be co treated with combination immunotherapy. They only gave me Opdivo after my spine met. I think they knew I would progress at sometime so held off with the big stuff for this brain met I have now. I appreciate all of this info. Thank you so much. Tracey

<p>Double TT- Toronto Canada</p>

I dont much about your particular situation. I am a new member on here, with my first post being yesterday. But, i just wanna say im rooting for you and really wish you the best of luck. Stay Positive

Hello Reese such kind words. Thank you. I appreciate it so much. Wishing you with success right back at you !
Tracey DoubleTT

<p>Double TT- Toronto Canada</p>

Well, shit fire!!! So sorry!!! Still - there is hope!!! I'm still here post brain and lung mets. Had surgery to the lung and SRS to the brain met followed by nivo alone and I am still here and NED for melanoma ever since. "Followed by" only because this was in 2010 when no current therapies were FDA approved - the ipi/nivo combo had not even been dreamed up - and I finally found the trial I participated in "after"!!! Ed has given you great information. We have learned that immunotherapy COMBINED with radiation produces better results than either treatment alone and causes no increased risk of any side effects. Intracranial swelling used to be something folks feared the combo would induce, but it DOESN'T!!!! Here are a zillion reports if you are interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi...

Hope that helps! Melanoma does indeed suck great big green hairy stinky wizard balls - but you got this. Hang in there!! Celeste

ohhh thank you so much Celeste...I really need to hear success stories. It just sucks ...all of this. I hope my gene type NRAS is up to good fight. In the video Ed sent me I watched all of it...I was fascinated to hear that probiotics, antioxidants are bad and being vegetarian with tons of fiber is the way to go. I fully committed to it almost 2 years ago but now I need to find a way to inject tons of oxidants into my brain like they did to the mice!!!!. I need to get positive it's really hard somedays. Wish I could have coffee mornings with you guys down the street. Thanks so much for being you and everyone else on here...warm hugs to all

<p>Double TT- Toronto Canada</p>

Glad to help! Would love to share a Timmy with you guys!!! Although putting me and Ed in the same room at the same time might make something implode in the universe! BAHAHAHA! No matter! We're gonna have to try it sometime!! Hang in there. Melanoma and its treatments sucks. But you can do it!!! Celeste

I just came back from Tim Horton's and I am sitting hear reading this while enjoying my best in the world coffee!!! I was going to add another happy (so far) brain treatment story that started back in the early fall of 2013 where I had my first brain scan, where they found 3 small mets. Within a week I was having cyberknife SRS surgery at the Ottawa General by Dr. Sinclair and Radiation Oncologist Dr. Malone, both world class. I had the brain scan, my first not because it is standard of care at that time in Ontario, Canada but because in order to qualify for checkmate 067 trial of Ipi+ nivo or either as monotherapy, they had to do one to make sure that I didn't have any active brain mets ( which would have disqualified me). So, to make a long story short, treatment lasted about one hour and a follow up scan was done 3 months later between x-mas and new years, and I was lucky to have no signs of anything new and treated tumors were gone. I started checkmate 067 at the end of January 2014 and was on it until Oct. 2019 until I developed grade 3 Colitis ( go figure) after 5 years and 9 months on trial. Small tumors tend to be able to be treated with a higher degree of success, so catching things early is a big positive. Wishing you the best with your treatment!!! Ed

Omgosh thanks for sharing another great brain met story of success. It truly makes me feel less alone and brings down my fears..thank you so much and happy for you for your success!!! Tracey

<p>Double TT- Toronto Canada</p>

In July, 2017 my wife was diagnosed with two brain mets. One was 25mm in the cerebellum. One was 10mm in the left frontal lobe. The cerebellum tumor was effacing, meaning it was blocking the flow of CSF in the brain, so was critically dangerous and was removed two days after it was discovered. The frontal lobe tumor was in an area difficult to operate on, so it was left in place. 9 days after the craniotomy, she had gamma knife to both locations - one to zap the frontal lobe tumor and she also had gamma knife to the edges of the surgical cavity where the cerebellum tumor was removed, to hit any cells left behind. Three weeks later she started ipi/nivo combo treatment. She is now NED and finished immunotherapy in September and is just on routine follow up scans now. She did have a bout of radiation necrosis to the cerebellum, about 3 months after the gamma knife, but they treated it with Avastin and it resolved.

Hello! and thank you so much for sharing this story...your wife had some serious brain mets. I am wondering about the necrosis as well...but having heard your wife was given a treatment plan for it and its resolved is so fantastic to hear...happy for you both!!!

<p>Double TT- Toronto Canada</p>