@seireland0611
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- June 20, 2017 at 7:51 pm
A bit late, but… My mom had a dark, irregular, raised, bleeding mole removed from her face about thirty years ago. No pathology. This January, she suddenly had brain mets. Craniotomy confirmed diagnosis. She's going good, has had gamma knife, and we're about to start ipi/nivo.
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- June 20, 2017 at 7:44 pm
Hi there Lesleynunn,
Wow, we are in pretty eerily similar boats.
My mom, also 59, was diagnosed (formally, after her craniotomy to remove a left frontal lesion) on April 17th. January 17th she went to the ER with right side weakness, our little podunk hospital ER did a CT and said she had a brain bleed and rushed her to the slightly less podunk big sister hospital where they did a comparative CT and showed it hadn't grown. Symptoms resolved within 48 hours. MRI showed three total 'lesions', they said it's likely metastatic cancer and released her.
Went for a PET scan, one hilar lymph node by lung lit up a little. Down the throat needle biopsy, came back clear. A little area in her intestines lit up, so a colonoscopy was up next, but we never got to that. I told her I thought we were on a wild goose chase and we'd only get a definitive answer from a brain biopsy, so we set it up. The planning scan for the biopsy revealed that it had silently gone from 8mm January 17th to 2.8 cm April 13th, the other two (left parietal and left putamen) had grown, and there was a new 4mm one close to where the resected tumor bed was. The plan was immediately changed to debulking craniotomy, though he said he got it all out.
Then we set up gamma knife for May 17th, where in the planning they found 3 new ones on the right frontal lobe, zapped all 6 and the tumor bed to make 7 zaps.
We just recently discovered from the PET scan she had to determine her baseline for treatment that she has "interval thickening" of her right adrenal gland with a 15 something uptake, so that's her only 'outside the brain' met.
Tomorrow, she will start ipi/nivo. We just found out she is also BRAF negative. We do have a melanoma specialist, and he's amazing.
Curious, would you happen to know if your father ever had any moles removed in his younger days?
After extensive searching and even a suspicious mole biopsy, they've found no primary lesion… However she recently told me about a mole she had removed from her face around 30 years ago that met all the ABCDE criteria for melanoma, so… That's probably what the primary was. On top of the fact that the loss of her mom and quitting her job afterwards made for the most stressful year of her life… I suspect all contributed.
Thank you for sharing with us, I am hopeful and very happy for you all to hear that treatments are shrinkign things up. Best of wishes for a complete response!
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- May 13, 2017 at 1:15 pm
I LOVE hearing this!!! I’m so happy for you! and that does indeed help reaffirm my hopes.The only thing I got out of the article was brain mets + terminal ileum — the only spot that lit up on her PET that hasnt been investigated. I’m going to ask them for a colonoscopy once gamma is done and she’s chill on keytruda. I’ve had a feeling about that spot. The treatment for brain mets is so inspiring, waiting for a new PET and BRAF results is nerve puke territory lol. I feel like best case they can treat the brain incredibly well, but I feel like Liam Neeson looking for this bastard primary site…. 🙂
Thank you again.
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- May 13, 2017 at 1:11 pm
Oh, thank you so so much. And yes, she has never had a seizure but they’re keeping her on Keppra 500mg 2x daily that they put her on after craniotomy since she’s just about to have gamma knife. She doesn’t have side effects from it so definitely better safe than sorry! Our doctors have given us that hope, which surprised me. The hospital we first went to gave us doom and gloom (we’re now at the top hospital in our state).I just fear these little blips. But I am happy to report she just messaged me to tell me its much better and almost not even noticable today. Little blip indeed 🙂
Thank you so much.
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- April 30, 2017 at 12:28 am
I know. The neurosurgeon did a fantastic wonderful job– but the pathology report was uploaded to the app on my phone. That's how we found out. No phone call, nothing. I mean he told me when he was done with surgery that it was pretty obviously melanoma but he couldn't say for sure until that path came back– Still, it just serves to remind that I have to remain diligent at all times. Despite the quality of care, I cannot count on timely coordination without ringing some bells. lol
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- April 29, 2017 at 11:04 pm
Just read your reply to jdc. I do have one question… The pathology report said that BRAF mutation was inconclusive and that genetic testing can be done 'if clinically indicated' so I called the neurosurgeon's nurse and she told me she'd figure it out– she seemed unfamiliar, which I get since she's a neurosurgeon's nurse and not a melanoma specialist's nurse… Should I look for a number to some kind of pathology or genetic testing department to request this myself? We aren't following up with neuro for crani stitch removal and scan until May 5– Melanoma specialist I imagine will probably be a week or two after that. In a perfect ideal world I'd like to have that genetic information available from the jump–the one tumor grew SO fast, I feel like I'm trying to work against time. And thank you again!!
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- April 29, 2017 at 10:57 pm
Thank you so much! I know you're right, once we get started on a path things will feel a bit more calm. I guess I read a horror story on immunotherapy cost and insurance, but this greatly reassures me. I hope you're doing well… and thank you, again 🙂 I hope to one day be able to be of assistance to newcomers here.
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