Keytruda & Brain Issues

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marta010
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Keytruda & Brain Issues

Post by marta010 » Mon Sep 19, 2016 7:26 am

Hi - shortly after my husband had his 7th Keytruda infusion, he developed severe exhaustion. We went in for lab tests and found his cortisol level was low, which is a common side effect of Keytruda. I also pushed for a brain MRI due to his history with brain mets (most recently a craniotomy in Feb 2016 followed by Gamma Knife in March 2016). He already had an MRI scheduled for late last week so we only moved it up a few days. Unfortunately, he had a fair amount of edema which his neuro surgeon & radiation oncologist feel is from radiation necrosis in the area that was treated with gamma knife. He had this happen after his first craniotomy several years ago. Even more concerning is an enlarged "dark" area that may be new tumor growth. The area was visible but smaller on his last MRI and the neuro/radiation team felt it was post surgical enhancement. Does the psuedo progression that is common with Keytruda also present in the brain? I've read some information that suggests that Keytruda does work on brain mets. At this point, with edema is being treated with steriods. His neuro team doesn't want to do any immediate treatment until this subsides and is planning on a follow up MRI in 6 weeks. I'm very anxious about these latest developments - wish we could get his brain to cooperate!

Ann

Catherine Poole
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Re: Keytruda & Brain Issues

Post by Catherine Poole » Mon Sep 19, 2016 10:08 am

This is so difficult to know and discover more about since the brain remains the most difficult organ to understand. My understanding is that the drugs do cross the blood brain barrier, but tend not to work there directly. There may be an effect from the entire immune system being revved up. However, SRS or other radiation seems to be the most promising way to treat brain mets. I hope someone else might have further information, but that is what we have gathered so far.
Catherine M. Poole, President/Founder
Melanoma International Foundation

marta010
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Re: Keytruda & Brain Issues

Post by marta010 » Tue Sep 20, 2016 7:42 am

We're waiting 6 weeks to rescan to see if the edema dissipates - I fully expect another gamma knife procedure if the area of concern continues to appear on his next scan.

cancersnewnormal
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Re: Keytruda & Brain Issues

Post by cancersnewnormal » Sat Sep 24, 2016 1:32 pm

Hi Ann,
I can't answer from a scientifically proven medical standpoint, but I can tell you from my own experience, that pembrolizumab (Keytruda) can help with brain metastasis. I was diagnosed stage IV with brain metastasis in April 2013. I had a craniotomy to remove the most troubling tumor, then was treated with gamma knife for the remaining tumors. 4 rounds of Ipilimumab (Yervoy) did nothing for my brain mets. During 2014, I was having gamma radiation at a rate of about once every 6 weeks (39 tumors treated!). Thankfully, Keytruda was FDA approved in late October of that year. After just 2 rounds of Keytruda, the brain mets that were cropping up at a rate of 4 per month, suddenly stopped. Previously treated tumors on my brain MRI began to shrink, and no new tumors were cropping up. However... there was ONE trouble area in the right parietal. A previously gamma treated tumor was beginning to develop edema. We monitored the growing edema on the MRI's over 3 months. I did not want to go onto steroids. In April 2015, with 11cm of edema and a midline shift of my brain, I finally suffered a facial seizure. It was time to either hit heavy steroids, or have the troublesome tumor removed. I opted for a second craniotomy. I really hate the side effects of steroids. :) The previously gamma treated tumor that was spilling edema into my brain for months, was removed. Obviously, in the brain, neurosurgeons cannot scoop out extra tissue to make clear margins. Although my doc did the best to clear everything, the pathology of the removed tissue, came back as having live melanoma activity. Sooooo... the most pain in the a** tumor in my head. The little spare bit doing all of this swelling, rather than just fading away like the others.... although like the others, it had been gamma radiated... it still had live cellular activity. We opted not to again gamma radiate the area, and hoped that the Keytruda would clear any of the possible live cells left behind. I never had a brain recurrence in that region. I did have one teeny recurrence near the area, which was again gamma radiated (round 10!), and have since been clear for 8 months now... almost unheard of given my brain was popping them up so rapidly.

It may be possible, that the troubling tumor in your husband's head still has a few live cells. It may be that the immunotherapy is attacking those cells, causing edema in the region. The immune system's response to "foreign invasion" is to swell, which is a baaad thing in the brain. The steroids that he is taking should help manage that edema while the immunotherapy continues to go after any cells still in his system. It becomes a balance game of not slowing the immune response to the point of continuing tumor spread, but not allowing the edema to wreak all manner of neurological havoc. I opted for the immediacy of surgical intervention, only because I am super aggressive, and had so easily "cruised" through my first craniotomy, knowing that my head is hard and handles cutting well. ;)

Your husband's doctors will be able to monitor the tumor size as the edema surrounding it decreases with steroids. Perhaps you can take comfort in the thought that the swelling may be a good sign that the immunotherapy he is on is doing what we all hope for... keeping the brain clean and free of disease spread.
--- Niki

marta010
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Re: Keytruda & Brain Issues

Post by marta010 » Mon Oct 03, 2016 10:38 am

Niki - thanks for your message. We are hopeful that the brain inflammation is due to the immunotherapy and that his next scan will show improvement. We already had a vacation planned when this happened and decided to go even with the recent events. I was apprehensive since we would be a few hours from a major medical center but everything turned out fine. We had a great time - probably a good thing he was still tapering off steroids since he had much more energy and less joint pain than he usually has! Take care - again, I appreciate your first hand experience!

Ann

goldfidler
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Re: Keytruda & Brain Issues

Post by goldfidler » Mon Nov 07, 2016 11:58 am

Hi Ann,

Look at my previous posts for my history during the last 12 months. Lung and Brain lesions/tumors. One round of high-dose SRS and six rounds of low-dose SRS. Clinical Trial MEDI4736, Nivo(Opdivo), Ipimimulab(Yervoy), and now Pembro (Keytruda). As of my last scans, I still had one brain lesion and several in chest. And still here.

Each person reacts differently to different treatment plans. For me, I think the Opdivo and Keytruda have had an effect on the brain mets. Definitely on the chest lesions. My last scans were in July 2016. I am scheduled for a new set on this Thursday. We should have more info about longer term effects and will happily share with you when I get the insight from our team.

The primary goal for everyone on this site is long-term, durable solutions. However, if these cannot be attained, a short-term, temporary solution is our second choice. These 2nd choices buy us some time until we can find a long-term solution or a long-term solution can be found with research. You have to remain positive and keep hope.

You and your husband are in our thoughts...

Catherine Poole
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Re: Keytruda & Brain Issues

Post by Catherine Poole » Wed Nov 09, 2016 8:59 am

Great to hear from you! I will post today a few things I have learned from the Society for Melanoma Research Meeting which ends today. Nothing really mind boggling, but some combinations and a new BRAF/MEK that decreases bad side effects and seems to have greater overall survival. Give me a bit of time to recuperate from travel and the election and I will post soon.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Polydad
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Re: Keytruda & Brain Issues

Post by Polydad » Fri Nov 25, 2016 12:48 am

A little history. My wife slammed her thumb in a car door while working abroad in Scotland. Darn 'wrong side' drivers!

A couple years later, 2011, a tumor splits her thumb nail. Left thumb and lymph nodes removed.

No signs for a scan or 2 and then tumors "too numerous to count" in her lungs.

We tried IL2 (horrible stuff), Chemo & Vervoy with no affect.

I was told, by my primary care doctor, that she probably had a month or two to live.

Then we 'lucked' in the phase 1 trial for Keytruda. The drug reversed her tumors almost immediately and she continued on it for 3 years when she was released from the program (50 doses and no real side effects). It's been a year off and she developed 1 tumor in her lung that was removed via micro-surgery. As of now all looks well in her lung.

However they now see 5 brain mets. So she has re-started the Keytruda and is scheduled for the SRS in a couple of weeks.

I hate this disease. The constant "now it's here, now it's changed" is maddening.

Her one question, does the Gamma knife have any immediate side effects or do they take a while to manifest? She's saying she doesn't want to wake up Christmas week and not know who her kids are, and is pondering pushing the SRS off until after the 1st of the year.

Any thoughts??

Jules
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Re: Keytruda & Brain Issues

Post by Jules » Fri Nov 25, 2016 4:15 am

The Gamma knife should not have any immediate side effects. My partner had it and felt absolutely nothing and it has shrunk and stabilised his brain tumour. No side effects whatsoever 12 months later.
He tried Keytruda for a couple of months for brain and lung mets but was switched to Ipi/Nivo after a new tumour appeared in his lung. Only had 2 doses of Ipi and 5 Nivo before stopping due to liver blood readings. It is now 7 months later with no treatment and only a tiny lung tumour showed on his recent PET and it was an extremely low reading. It is so great leading a fairly normal life again but of course there is always the worry about when the beast will return. We just have to be ready to fight back again.

Catherine Poole
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Re: Keytruda & Brain Issues

Post by Catherine Poole » Fri Nov 25, 2016 7:23 am

Interesting discussion about the part of the body that there seems to be very limited knowledge on, the brain. Swelling is common when treating brain mets and often steroids are given to bring it down. The beauty of SRS and other pinpointed radiation of the brain is the lack of cognitive side effects. Whole brain radiation on the other hand is quite different in that regard. SRS and gamma knife have saved a lot of melanoma patients, killing the mets. Keytruda may rev up the immune system to battle the brain mets too. It is said but not widely proven that these agents do cross the blood brain barrier but whether they are active once they get there is not really known.
I am hoping things go well for all of you. You might want to look at our expert's webinar on brain mets here: http://melanomainternational.org/webina ... metastases
Catherine M. Poole, President/Founder
Melanoma International Foundation

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