- July 14, 2022 at 1:29 pm
It’s been a while since I posted; things had been going well since being diagnosed with brain mets and having the CyberKnife treatments done in October 2021. However, I had a grand mal seizure on June 12th and ended up in the ICU. Follow-up with my radiation onc and medical onc later that week seems to have determined I have necrosis in my brain, and the swelling caused the seizure. I am now back on Dexamethasone for the swelling (which I hate) and also taking Keppra to keep any additional seizures at bay.
My radiation onc presented my case to the tumor board and it seems they all agree I do have necrosis, but I am not sure what exactly that means. I’m wondering if anyone has any information on necrosis? I have researched but can’t seem to find much, and of course, what I do find on the internet sounds horrible. My tumors have increased in size since March but I am not sure what the necrosis has to do with that. I am scheduled to go back on July 29th for another MRI and to meet with both of my oncs but I am trying to prepare myself for what is ahead. I know every case is different but has anyone been able to lead a normal life/work/etc. with this? I am currently out of work, not really allowed to drive and I was unable to fly to visit my family (not that I really felt like it anyway). I feel mostly okay, I am tired which I have read can be attributed to the Keppra and I do get headaches but not as bad as before the seizure…I knew something was wrong but did not expect all of this.
Any information would be greatly appreciated! Thank you!
BubblesParticipantSo sorry you are dealing with this, Jenn, Having the seizure and all that has followed has been very scary, I’m sure. In a nutshell – necrosis = dead or damaged tissue. In the case of tumor necrosis after treatment of brain mets, this occurs because rather than resolving in shrinking little bits of scar tissue – the tumor and/or the surrounding tissue becomes a damaged but irritated mass that, rather than shrinking away, becomes inflamed with the body calling out for reinforcements in the form of additional cellular activity and fluid – leading to the swelling. As there is no space for such in the brain, that combined with the jangling of damaged nerves, can lead to seizures.
- July 16, 2022 at 10:33 am
The first obvious problem is to determine via scans, etc if the “mass” seen is tumor necrosis or a growing tumor. It seems that you oncology team has made the determination of necrosis in your case. Many times with observation and meds to prevent seizures and those to decrease swelling – the process will resolve slowly, but spontaneously. Occasionally, surgery is used to go in and clean out the area, but obviously that is something to avoid if at all possible.
Tumor necrosis is a known risk when treating brain mets with radiation and immunotherapy. There are many many articles/posts addressing it on my blog if you are interested. (Just put ‘brain mets’ in the search bubble if you are.) However, despite that risk, what are we to do? We can’t let melanoma in the brain go untreated as the outcome there is certain and untenable!!!! This report from ASCO 2021 sheds one slightly different twist on the discussion of necrosis after such treatment – Is radiation necrosis in radiated melanoma brain metastasis increasing because immunotherapy is contributing to this or are patients just living longer?
I hope this explains a bit about what is going on in a way that is helpful to you. Hang tough. Take good care. Always wishing you my best – celeste
Hi Jenn – my husband had a similar experience in May. Initially diagnoesd in 2012, he has a history of brain mets treated both by gamma knife(8) and surgery(5). The most recent brain hiccup in May also involved a seizure followed by MRI which showed a new mass in a previously treated (both gamma knife and craniotomy in 2016). Since this area had prior radiation treatment, his surgeon felt another craniotomy was needed. Also wasn’t sure if the mass was tumor regrowth or necrosis. The pathology showed mainly hemorrhagic material with a few rare melanoma cells. He has a follow up MRI this week to determine next steps, if any. During the past 10 years since his diagnosis, he’s had a few other incidents with radiation necrosis in his brain. A couple were treated with Dexamethasone – usually followed by surgery. He’s also had Avastin after one particularly large area just wouldn’t clear up with Dex. You might want to discuss this option with your neuro. Even with all the trauma to his brain, his only deficit is vision related due to the location of one of his tumors near the optic nerve. Honestly, his brain is sharper than mine! Keppra also makes him tired – dosage was increased after the seizure which is likely the cause of the fatigue. I don’t know if this info helps or not. I would like to think his long term survival would be encouraging. Take care.
- July 20, 2022 at 1:26 pm
- July 20, 2022 at 2:33 pm
Thank you so much for your response! This is all great information to have going into my appointment next week. I have a couple of questions if you don’t mind:
Does your husband currently work, or has he during any of this?
Is he allowed to drive?
How would you consider his quality of life dealing with all of this? Not to mention yours as a caregiver?
And I couldn’t agree more, dexamethasone is the devil, but it’s a necessary evil right now for me. I thank you again for your response and sharing you and your husband’s experience!
Hi Jenn – my husband no longer drives due to the vision deficit caused by the brain tumor and has also developed macular degeneration in one eye. Unfortunately, he was unable to return to work about 4 months into his treatment and has been on long term disability since shortly after his diagnosis. He has had a host of treatment related side effects over the years that made it impossible to return to work. I know he would return in a minute if it was at all possible. His quality of life is pretty good when not dealing with a crisis – the last 18 mos were pretty tough with a couple of major surgeries and lengthy recoveries. He does have ongoing fatigue and has limited stamina so his physical activity is pretty minimal. He takes all the hassles in stride – never appears to be bothered by his situation. I feel like we’ve been robbed of what we envisioned our 50’s to be – but what can you do but take it one day at a time. I feel fortunate to have been able to work from home since COVID began so I can keep close tabs on him. I still get anxious around scan time but not nearly as bad as in the early days. I hope your brain settles down and you can move on to better times.
- July 20, 2022 at 7:50 pm
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