› Forums › General Melanoma Community › Brain mets
- This topic has 11 replies, 6 voices, and was last updated 3 years, 7 months ago by Rond.
My latest mri showed 15 tiny brain mets, my doctor mentioned whole brain radiation, I’m terrified of this procedure. My question is can they do a different radiation as the gamma knife or the srs? Also going to be starting keytruda in a few weeks. Was taking taf/mek which has cleared lung and most of my liver mets. Any advice is so much appreciated.
- October 11, 2019 at 6:34 pm
lkbParticipantShelly, I’m sorry to hear about the brain mets. Without detracting from the seriousness of them, I must say I’m heartened by the following discussion, in which experts say they are seeing years (not months) of survival in patients with brain mets via great breakthroughs in immunotherapy, etc. . Too, this is not the first time I have heard prominent experts say that WBR is not only ineffective, but also can cause cognitive decline.
- October 11, 2019 at 7:46 pm
I wonder if your oncologists have seen this video and others like it.
Wishing you all the best. Keep us posted.
RondParticipantI just completed a week of whole brain radiation this week, and it was not as scary as it sounds. They create the mask to fit your head, and hold it in place. Each proceedure takes about 4 minutes, so quick that I never regretted going. It turns out I have 9 mets in my brain, so that’s why they opted for whole brain. This is so aggressive that if they use targeted radiation, by the time they zap a few, it has given new ones a chance to grow. So they try to get them all at once. I’ll let you know how that goes. I’d love to hear from anyone else who has gone through something similar.
- October 27, 2019 at 11:22 am
- October 11, 2019 at 9:49 pm
Sorry for all that you are dealing with. Some institutions will treat multiple brain mets with SRS or gamma knife, even if they have to do it in “sets” and multiple episodes, as it were. I would certainly ask about that.
Additionally, the ipi/nivo combo (Yervoy plus Opdivo) has proven to have the best response rates of the immunotherapies with response rates to ipi alone at about 10-15%, to either anti-PD-1 (Opdivo or Keytruda) at about 40%, and the ipi/nivo combo at 50+%.
Here is a report on these therapies and others: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
Here are a zillion reports on brain mets in melanoma: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets+and+immunotherapy
Here is a discussion by some world class melanoma experts on appropriate treatment of melanoma brain mets: https://www.onclive.com/peer-exchange/malignant-melanoma-management/metastatic-melanoma-brain-metastases
I would certainly discuss all these points with my oncologist. I would also make sure that I was seeing an oncologist who see LOTS of melanoma patients. Much has changed in melanoma care in the past few years. Your doc needs to be up to date on the latest standards of care. Your life may depend on it. This is by no means complete – but is a list of experts I recently put together: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/internationally-renowned-melanoma.html
You do have reason for hope. With expert care melanoma peeps can survive brain mets. Hang tough. Fight for appropriate care. Ask more questions as you have the need. I wish you my best. Celeste
Hello Bubbled, I have done 1 treatment of the yervoy:Opdivo and it put me in the hospital with severe colitis.. Then I switched to taf/mek. My oncologist thinks the yervoy was to toxic for me. Thank you for all the things you pointed out to me, I am definitely going trough all of them. I also am seeing a Melanoma specialist at University of Michigan Medicine.
- October 11, 2019 at 10:27 pm
See this video on managing brain mets in melanoma: https://www.youtube.com/watch?v=gDu3x9xhH-U
- October 12, 2019 at 12:56 am
My first infusion of Yervoy:Opdivo gave me very bad diarrhea. After recovering for 9 weeks I received my second infusion of Yervoy:Opdivo; for this and the remaining 2 combo infusions my oncologist reduced the dose of Yervoy by 50%.
Thank you for your response.
- October 12, 2019 at 5:17 pm
Thank you Edwin for your response, I will definitely bring this up with my doctor.
- October 12, 2019 at 5:18 pm
DympsdParticipantHI Shelly, unfortunately my husband just found out he has 20 more new brain mets on top of the ones he already had.II was reluctant to do the WBR but because he was having multiple seizures after first week of combination immunotherapy they felt that this was necessary. Partly because he progressed so quickly ( tumors new since August) and because of his condition we are doing the radiation this week. I was very apprehensive and discussed this with radiation oncologist after reading about WBR. She actually reassured me somewhat. She said that she felt the radiation can help stall tumor progression and said that the brain tumor burden while serious is not usually the cause for patients with extra cerebral tumors to succumb to melanoma. That the body tumors were most fatal. It has been such a crazy week for us. Seizure medication doubled and an additional one added, plus dexamethasone and Memantine ( drug to help prevent demetia/neuro decline) . I have read the literature and listened to the podcasts but have to believe that the treatment plan sometimes has to be tailored to the individual in the moment in accordance to symptoms and necessity. I wish you every success.Hopefully the cyber knife will still be an option unfortunately it seems it is not for us.
- October 20, 2019 at 4:13 am
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