› Forums › General Melanoma Community › Mutiple bleeds from brain lesions
- This topic has 7 replies, 4 voices, and was last updated 7 years ago by
Maria C.
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- April 23, 2017 at 4:42 am
My husband has had 10 lesions in his brain the first 5 were treated sucessfully with SRS Radiation, as were the 2 in the second set. Recently (March 29, 2017) 3 more lesions were found in his brain 4 days later he began loosing balance and motor skills. Upon addmission to hospital on April 3 out was discovered line of the mets was bleeding. He had surgery and 5 days of physical rehab and came home 13 days after being admitted. 36 hours after returning home he had a horrible seizure and was taken back to hospital where out was discovered there was an additional met that had been bleeding in a different address of brain. He underwent a second surgery and in now home doing well. He also has a met to a lung node and a tumor in the tail of the pancreas. Has anyone had 2 bleeds on the brain? Does anyone know what they about the tumor on his pancreads??
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- April 23, 2017 at 1:06 pm
Sorry you and your husband are dealing with all this. Sadly melanoma tumors are prone to bleeding. It sounds like his docs are getting that part under control. From looking at the profile you put up…it doesn't look as though your husband is currently on systemic therapy like anti-PD1 (either nivo/Opdivo or pembro/Keytruda). Those drugs will not only work in the lung and pancreas but have demonstrated effects in the brain as well….especially when used with or just after radiation. Here is just one report: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/03/srs-with-any-systemic-therapy-helps.html
There are many other such reports….just use the search bubble at the top left corner of the blog is you want.
Additionally, you didn't mention if your husband is BRAF positive. If so, targeted therapy with a combination of a BRAF/MEK inhibitor might be a good option to treat all his lesions. And finally, surgery for melanoma lesions can always be an option…but is usually done along with some sort of systemic therapy unless it is one single lesion.
Hope this helps. I wish you and your husband my best. Celeste
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- April 23, 2017 at 6:55 pm
He is not braf positive and he was having pembro infusions and taking temodar on a 21 day cycle until about 9 weeks ago when labs and ulcerative colitis hospitalized him. I think they plan to resume those once his toxicity from the drugs is back at a safe level again. I am just wondering if anyone else had had 2 bleeding lesions so close together because the surgeon said it was so rare. -
- April 23, 2017 at 7:32 pm
Okay. That sounds like a good plan. There are many here who have either had a similar experience and/or have loved ones who have. Sadly, it is pretty common with melanoma brain mets. (Perhaps your surgeon is not particularly familiar with melanoma mets.) Hopefuly those who have experience in this ill chime in. You can always use the search option on this forum to read older posts on various topics. Hope things improve soon. c
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- April 24, 2017 at 12:07 pm
Hi there – so sorry your husband is dealing with this, but I too have had 2 (out of 5 brain mets total) bleed after gamma knife. Both bleeds led to craniotomies, and they were back-to-back (June & July of 2016). I am now on pembro for maintenance and all has been stable since last August.
Sounds like your husband's surgeries were even closer than mine?! I was a lunatic in the hospital after my second, based on being pumped up by so many steroids…how was your husband after his second surgery?
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- April 25, 2017 at 6:06 am
Thanks for sharing, I am glad you are stable, it gives me more hope! His were 11 days apart. It was 1 week today, since his 2nd one. He was pretty pumped up on steriods and pain meds too for the first few days, but they tapered him off the dex pretty fast. The past couple days he has mostly slept. His dr. Plans to do SRS Radiation to the area of the resected bleeds/tumors and the 1 remaining lesion in about 4 weeks. They want to resume pembro and temodar as soon as possible too. Did you take the temodar? Do/did you have tumors elsewhere in your body? -
- April 28, 2017 at 2:03 am
Hi there – sorry for the delay in responding. I do not have tumors elsewhere, for some strange reason my mets gravitated to my brain only. I did not take temodor, just the ipi/nivo and now pembro as maintenance.
But it really took a lot to get those 5 brain mets stablized. Last time this year I would find myself calling my husband crying because I found myself in the parking lot of the cancer center but didn't know where I was. Another time I couldn't move my right foot down on the break to stop my car – I had to use my left foot and pull into a neighbor's driveway, then call my husband and son to get me. It was super scary.
But now I'm fine. Totally, totally fine. And my husband was right by my side all the way, up and down and all around…
Hang in…
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- April 26, 2017 at 6:41 pm
Ugh… two brain surgeries so close together! Hopefully he won't have any new brain mets that need to be dealt such a heavy hand. Unfortunately, brain mets are unpredictable. Some will bleed a little bit and resolve on their own. Some will remain as scar tissue for years later… possibly forever. Some will swell and bleed an unimaginable amount after radiation. The good news, is that if they're bleeding… they're breaking down and going away. The bad news, he's already found out…. craniotomy. Prior to the FDA approval of Keytruda, I was practically a pro at cropping up brain mets. I've had 39 total. Some bled, some just melted away without further issue, some are still hanging out doing nothing but being a lump of scar tissue. A few bleeders resolved on their own, and one made enough of a mess, that I had a second craniotomy. The locations of the "troublemakers" was utterly random. The only way to know what was going on inside my head was with MRI's.
Like your hubs, I also had lung mets and "something" on the tail of the pancreas. Keytruda resolved any remaining lung nodules, after I had the largest surgically removed. The "something" on the tail of my pancreas has been labled a "stable cyst" for the past four years. It didn't go away with the Keytruda as all of my other spots did, but I have never had it biopsied to determine exactly what it is. It's not completely uncommon for folks to have pancreatic cysts. Have the radiologists labeled it as definite melanoma metastasis? It is possible. I know there is at least one patient here on the forum who has had to deal with quite a large pancreatic lesion.
How long has he been on the pembro and temodar?
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