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Brain mets

Brain mets

Posted By
ShellyGraham
10/11/2019 2:34pm
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Replies: 9

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.

lkb - (10/11/2019 - 3:46pm)

Shelly, 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.
https://www.onclive.com/peer-exchange/malignant-melanoma-management/meta...
I wonder if your oncologists have seen this video and others like it.
Wishing you all the best. Keep us posted.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .

 

Edwin - (10/11/2019 - 4:08pm)

I recall that Yervoy/Opdivo immunotherapy is much more effective for brain mets than Keytruda or Opdivo alone is. Yervoy/Keytruda might be as effective as Yervoy/Opdivo.

Bubbles - (10/11/2019 - 5:49pm)

Hi Shelly,

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/melan...

Here are a zillion reports on brain mets in melanoma: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brai...

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/meta...

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/intern...

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

ShellyGraham - (10/11/2019 - 6:27pm)

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.

Bubbles - (10/11/2019 - 6:46pm)

Alright. I understand. I'm glad you are being seen by a specialist. Hang in there. There are many smart and caring peeps on this board. Ask more as you have the need. Keep us posted. There IS hope!!! yours, celeste

Edwin - (10/11/2019 - 8:56pm)

See this video on managing brain mets in melanoma: https://www.youtube.com/watch?v=gDu3x9xhH-U

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%.

Bubbles - (10/12/2019 - 7:50am)

Edwin makes a good point. There are some who can continue Yervoy even after a bad reaction with a diminished dose, sometimes with simultaneous steroids, and careful monitoring. Certainly something to talk to your doc about.

ShellyGraham - (10/12/2019 - 1:17pm)

Thank you for your response.

ShellyGraham - (10/12/2019 - 1:18pm)

Thank you Edwin for your response, I will definitely bring this up with my doctor.