› Forums › General Melanoma Community › Whole Brain Radiation…
- This topic has 6 replies, 6 voices, and was last updated 7 years, 10 months ago by
sister of patient.
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- August 2, 2017 at 12:06 am
Hey Everyone,
Well, after an MRI, it appears that I have 2 new brain mets and an older one that is starting to get bigger. They are all really small. I've had 3 cranies at this point. Was about to start Keytruda, but now multiple docs are recommending whole brain radiation as a first step and then Keytruda.
I'm really struggling with this since I believe WBRT is a way to close lots of doors including the big one…life. I'm 41 and healthy, minus my melanoma issues. Had 100% response to il-2, survived the cranies for brain mets, had a colon resect…etc. I feel like to starting Keytruda to see if it works (along with very close monitoring) might be the way to go and the WBRT if things aren't looking good. I just don't know.
Are there any experience with WBRT that are positive in outcome? I do hear that it can raise the efficacy of Keytruda through immune response with the radiation. But, I also hear folks are lucky to get through it comfortably and then live much more than a year or two.
Anyhow, would love to hear anyones voice on this one. I'm feeling awefully empty right now after this long 4 year battle and running into what feels like the imminent reality of the end.
Ugh.
Ben
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- August 2, 2017 at 12:14 am
Hi Ben,
I've had good success with targeted brain radiation and nivo. I'm assuming targeted isn't an option for you. I don't know much about this other than I've had one brain tumor removed and can't imagine doing it again. Thinking good thoughts and sending good wishes to you.
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- August 2, 2017 at 12:37 am
Radiation can indeed improve the effectiveness of immunotherapy. Together those therapies are much more beneficial than either alone. However, SRS or gamma knife are the types of radiation recommended – NOT whole brain. Folks and family on this board have personal experience with SRS being utilized to treat numerous (I'm talking in the teens!!!) brain mets with specific directed radiation to those mets via SRS or gamma knife. Three mets can certainly be treated in this way!!! Here are a ton of articles: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+brain+mets
And while this article is included in the link above…it is super important: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
I hope you are seeing a melanoma specialist. It could make all the difference. I wish you well. Celeste
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- August 2, 2017 at 12:57 am
Hi Ben, I have had 3 mets treated by cyberknife (SRS) therapy in fall of 2013 and I feel the best way to go is a referral to a good center for SRS treatment not whole brain. There is some new data out that is very interesting and here is a link to a panel of oncologist from last month talking about new findings using Immunotherapy drugs to treat brain mets. Best Wishes!!!Ed https://www.youtube.com/watch?v=X5xGQpdp9OA
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- August 2, 2017 at 1:21 pm
Ben… is there a reason your docs are not steering toward gamma again? If they're still really tiny, starting Keytruda may eliminate them. There are folks on this forum who have had some success with that. However, from my personal experience, if a lesion still has live mutant cells, that Keytruda could make things a bigger mess in your head….. it's how I ended up with craniotomy #2. Radiation oncologists are definitely shying away from whole brain. Your insurance company may give you some grief about things, but it's worth the fight to go for another round of gamma, and then see if Keytruda will keep any new lesions from joining the party. Assuming you're not BRAF +…. yes?
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- August 2, 2017 at 3:40 pm
Hi Everyone,
First, thank you for your insights.
I did fail to share some interesting things about my Gamma Knife experiences: I have had a number of lesions treated with the Gamma Knife. The first time, I had seizures right after treatment on the way home–around 3 grand mals. That lesion then "exploded" shortly after that, and required surgery to be removed. Then, about 11 months later, the second lesion exploded as well, requiring an emergency procedure. This go around, one of the lesions had been treated (the one that is not new) and did shrink, but now is growing again. The radiation oncologist said there is something "weird" about my lesions and that they don't like the Gamma Knife. So, there is a fear that more Gamma Knife could cause bleeding and risk of immediate death. They are hesitant to do another procedure of this type and are now recommending the WBRT. My oncologist only focuses on Melanoma (Dr. Branden Curti at Providence in Portland, OR) and is considered a top guy in the Melanoma field utilizing immunotherapy: while I don't like his recommendation (who wants WBRT?), I trust his expertise. I agree that just doing Keytruda could cause some ill effects of swelling as well, and this is risky too. I did respond very well to il-2, so I hope I would also respond well to Keytruda. I am not BRAF +, so targeted therapy is out of the question for now.
So, that's where it's at for now. All kind of risky…
Ben
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- August 2, 2017 at 5:57 pm
Hi Ben,
So sorry to hear you are in this position but I wanted to say that WBR isn't "the end" if it is the only radiation treatment available. My sister had it and though we wanted some kind of SRS instead, it just wasn't possible. The really important thing is it worked!!
Side affects:
– By day 5 of rads, her hair started to come out and on day 7 she shaved her head – hair started to come back in about 5 months and it's white now (eyebrows and eyelashes too).
– The biggest short term side effect that lingered was fatigue – they tell you it'll last for a couple of months but 6 months is more truthful!!
– The biggest long term effect is that her short term memory was affected and that damage is permanent but it's not severe (that kind of hit a peak, then levelled out), so, don't worry that it will turn you into a "veggie," – it won't. A common example is that, occasionally, she'll start to say something and then forget what she was going to say – but hey, that happens to all of us from time to time. Prior to her diagnosis, my sister was a teacher and she's finally feeling well enough that she's considering trying to do a couple of days a week this fall. Her brain and ability to teach are not of any concern in that decision (her back is the issue).
I hope this helps Ben and most importantly, that it works for you. Best wishes for the best outcome!!!
Barb
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