For the past few weeks my mom has been suffering from pretty constant headaches and physical head sensitivity. We met with her doctors, explained the symptoms and hoped they could give us an easy explanation as to why she was having these headaches. They ordered an MRI for her brain, and the results were not what we had hoped.
She has a small but definite lesion on her frontal lobe (about 5mm.) They gave her some steroids to help with any inflammation she may have in that area right now, as well as a med for the migraines. They want to treat the area with targeted radiation. No more than 5 treatments, but I'm still worried about the side effects. She had 10 radiation treatments to her lower spine back in February, and it made her severely I'll everytime.
We are trying to stay positive considering they found the lesion before it got much bigger, but still worries me that the cancer has spread further despite the immunotherapy treatments.
Has anyone else experienced this disease metastasizing to the brain? Or radiation to the brain?
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H_Daughter
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I am a caregiver to my 29 year old boyfriend who has stage 4 melanoma. We do have experience with a brain lesion. Unfortunately it was our first encounter this time around. He experienced severe headaches for 3 days, and he never gets headaches. Ever. And the second day he had trouble speaking; in a way that was EXTREMELY bizarre to me. He is very well spoken and has a beautifully colorful vocabulary (one of the reasons I love him 😊) and he would start a sentence, then look at me and stop and look really confused.. I looked up side effects of migraines, figuring that’s what it was. Then the confusion got worse, sentences got shorter, and then he started hearing “music”. He ran around our house looking for the source.. and he said “YOU DONT HEAR THAT!?!?” And it was dead silent. That’s when I knew we had to go somewhere.. I took him to an urgent care center cause he refused the ER, and he failed the neurological tests terribly, and they referred us to the closest ER which was only about 5 minutes away. On the way; he had his first gran Mal seizure. Right in the middle of a busy highway. Ambulance was called, and within 20 minutes of us being there; he had another seizure; and a brain scan which told us he had a 4.7cm mass. (Ended up being 2 ish cm) and the rest was blood. (Left temporal lobe) Emergency surgery removed it, and he had a one time targeted radiation treatment to that exact spot. Since then; by gods grace nothing else has shown up in any MRIs. If you want to see our whole journey, you can find it on my page, and my boyfriend has his own story on “young adults with melanoma”
If you have any questions or ANYTHING reach out. I know a few people here have dealt with brain lesions.
I apologize, the brain lesion was not 4.7cm (that was another tumor he had in his lung) it was indeed 2. Something cm though. Getting my tumors mixed up; 😣
I am so sorry you both went through all of that, that is terrifying...
I have noticed some minor issues when she gets overwhelmed and can't finish her sentences or confuses one word for another. At first we thought it was exhaustion and possibly the meds she is on. But now it all kind of makes more sense. It feels even scarier knowing it in her brain now as well and many other internal organs and spine, but I've had doctors tell me that even with it making it's way into her brain, she can recover.
We have a consultation with the radiologist on Tuesday, I guess they are going to do some neurological/ cognitive testing and go over the plan of action for this.
I'm so glad to hear nothing else has shown up in his MRIs! I will check out his story, and thank you so much for commenting!
She absolutely can. Ryan had cancer through his whole body; everywhere but his arms. And with the treatments and a lot of changes we made with diet etc, he has had 2 NED scans. We are grateful and it CAN happen ❤️
My sister had multiple brain lesions. She did not do radiation but actually had one round of gamma knife with a second gamma scheduled. what I will warn you about is that melanoma lesions bleed easy, doctors didn’t tell us this until after one ruptured the night before her second scheduled gamma knife (this disease sucks) I would ask about gamma knife and know what to watch for like severe headache and nausea which requires immediate trip to er. My sister ended up losing some sight and needed a craniotomy. Im so sorry that your mom and family are going through this and that the responsibility falls on your young shoulders. I can say that I am grateful I was able to care for my sister and I hold onto that everyday. We are here for you.
Kelly and Bigsister3 have shared with you their experiences and ideas. Once melanoma starts to metastasize to internal organs, lungs, liver and brain are on deck for exploitation, and then bones. Your mom is in that full on systemic involvement which is why a systemic approach like immunotherapy is targeting everywhere. But you may also need secondary support like surgery, radiation, gamma knife, TVec, BRAF inhibitors, clinical trials, etc to help.
Being on steroids can have
a negative impact on the effectiveness of immunotherapies so you may want to ask about that. And immunotherapy takes a while to see the positive impact of the treatment. I can’t remember if you mom is BRAF positive or wild type tumors genetically, but there are recent interventions piggy backing BRAF meds with immunotherapy, so this may be another question to consider in the consultation with the doctors.
Frontal lobe is where our advanced decision making center is so mom May or may not be impacted in executive functions. Asking docs to discuss functional impact on where the tumor is located may be helpful to you and mom.
I have a follow up and difficult question. Has your mom got an updated will, advance medical directive and medical power of attorney? Has there been a consult with palliative care so everyone is on the same page about mom’s values and preferences for treatment and care, especially pain management? If not, these may be discussions that could benefit from happening with facilitation. Some folks find these questions horrifying, or insensitive, or culturally misaligned, none of which are my intention. My questions come from a place of loving courage, practicality, and advocacy.
I’m glad you are finding next steps. You are acting in courageous ways even in the face of daunting and ever changing information. May there be more relief for mom in the decisions you all reach this week.
Thankfully I made sure she had her will, medical directive and medical/financial power of attorney taken care of once we got the news of the metastatic melanoma. I never realized how important documents like that could be until we were face to face with this terrible disease. Her palliative care team have been very helpful with managing her symptoms and helping me navigate my role as caregiver.
The news of the cancer spreading to her brain is definitely not easy for us, although it has been a fear of ours considering she has a good about of the disease in her spine and well as internal organs (lungs, liver, spleen, lymph nodes etc.)
We have to wait about 6 weeks until they will rescan her to see how the immunotherapy is working.
I have not heard any doctor mention BRAF positive, although her first team of doctors were not very forthcoming in regards to her condition when I would ask questions. The new team is wonderful and very understanding of my role in her care. If I have any questions they will give me answers. I'm still learning more about this disease and possible treatments, knowledge is the only way I can feel like I have even a bit of control in this situation. This community is definitely helping me find new questions to ask and more options to explore.
Good job on the legal and palliative care connections. These can be challenging conversations.
Given your description, it sounds like this new group could provide you with the full tumor pathology and current staging descriptions if you asked along with descriptions as to what each component means.
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