Brain met stats are so horrific (>3)

I wish I had some good stats to share, but as I posted on your other thread I am the same as you – 8 brain mets, just started treatment in October (found & diagnosed 9/24). I’m waiting to see how my current treatment is going…one round of Cyberknife ended 10/13 and taking a low dose of Braftovi/Mektovi. Still on Dex, 7mg on a slow taper and my oncologist has discussed adding immuno to my targeted meds once I am off the steroids. Brain MRI is on 12/13. It’s so hard to wait; I feel like a ticking time bomb!!

Hoping someone will chime in with some good news!

Keep on fighting,

Jenn

Hi guys,

Yes, CNS involvement certainly makes melanoma suck even more than it usually does.  However, many of us with a history of brain mets are still around and kicking!!!  Lots of us.  Despite being refused from trials for years and years, melanoma patients with brain mets definitively proved that both targeted therapy (if BRAF positive) and immunotherapy can work in the brain as well as the body!!!  Too bad all the profiles were deleted when we were blessed with this ‘new and improved’ version of the forum.

Still, things are much more complicated when there is great involvement with multiple tumors.  But even there, we have several members who beat those odds.  Two readily come to mind – Barb’s sister (Barb has posted here for many years under the handle “Sister of patient”) and Ted under “tedtell1”.  Here is a link under which they both posted:

https://forum.melanoma.org/forums/topic/who-is-ned-for-5-or-more-years/

Melanoma is not for sissies, especially with the special challenges each of you is facing.  However, you sound like two tough cookies, to me.  Hang in there!!  celeste

Celeste,

Thank you for the encouragement and positive stories! It definitely helps me get through the day knowing others have survived this battle. We can do it too!

Appreciate your support!

Keeping up the fight,

Jenn

Hi Kathy,
I’m sorry you’re going through a hard time. I don’t have stats to share nor do I have brain mets, but I do have a large tumor burden in multiple places and am currently on the ipi/nivo regimen. This sure is a tough road with hard days which I can relate to. Please don’t give up! Sending you big hugs from CA. Keep fighting a good fight! You got this! 💗

Hi Kathy- my husband has been dealing with brain mets since his initial diagnosis in 2012. Numerous gamma knife treatments and brain surgeries over the years and he still fights on. He has one pesky area that just won’t quit acting up – hope his mri next week is more definitive on whether it’s tumor or necrosis.
The remainder of his body is tumor free- been treating with Keytruda and Tafinlar for many years and it’s taken a long time to achieve that!  It’s not easy but he’s hanging in there one day at a time. I remember bursting into tears when I first read the survival statistics and thought he’d be gone in months but he’s still here!

ann

Going through similar.  Had 2 small brain mets treated with SRS in Feb 2020 – started Nivo and when my body progressed went on Taf/Mek.  Did taf/mek until July 2021 when the tumor on my T2 tried to paralyze me.  Had surgery and found a small brain met during MRI at that time.  Had SRS for that and started on the combo ipi/nivo.  On follow up imaging 5-6 more popped up in brain.  Just had SRS to those on Monday.  I wonder if targeted therapy was holding back the brain mets?  Perhaps targeted was keeping my T2 at bay and once targeted stopped keeping it – it helped spread further to the brain.  I just had my 3rd dose of Ipi/nivo yesterday with no real side effects, probably not a responder.  Will probably go back to targeted if I make it that far.

Ladies, no reason to get down and out.

In 2012, I had melanoma in pretty much every organ, brain and spinal cord.

I had two craniotomy, with the surgeon removing twenty eight pieces of anything that resembled cancer.

Never got the count, which were benign or malignancy. Also had three Gamma Knifes for some more brain tumors. I did have some bleeding in the brain.

I received  the Ipi / Nivo treatment for two years. Nine years later, all has been wonderful.

Put yourself with the best melanoma doctors and all should end up well.

It is scary but this is a different era for brain mets. I was NED for 2 years (after a recurrence) when 3 brain mets popped up. SRS (including 1 to a tumor almost too big to zap with this protocol and inaccessible through surgery), taking steroids while getting immunotherapy which is supposedly a no no as it is thought to compromise effectiveness, and only being able to get 1 of the 4 recommended combo ipi/nivo due to immediate side effects (as in, started the day after treatment). Pretty comparable to the way I’ve lived my life, not in a direct fashion and not as typically considered optimal! But 2 weeks ago, got a continued all clear from my doc. This brings me to 1.5 years again NED. And happy words from my doc such as that this could have been a limited, regional recurrence. Hang in there. Stay strong.