So we were able to see the neurologist early, which I’m super glad we did. His neurologist said he doesn’t believe that the MRI shows definitively a recurrence. To him, it looks more like, and is in the time line of radiation necrosis. Ryan got a large dose right after his resection of the brain tumor in September. And apparently fits the time line of those effects. He doesn’t think it has characteristics of a tumor either. The immunotherapy most likely aided in the brain swelling; which effects a decent percentage of patients. His increased seizure activity was due to the brain swelling as well. So long story short; plan is - no more radiation, no brain surgery; but to continue taking Taf/Mek which is what his oncologist suggested to take again. He does have a 1cm lesion in his abdomen lining. Mesentery. That’s the only spot the PET scan showed.
I’m sure I’m missing a ton of information. But that’s the jist.
Love to all xoxo
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kellyOd
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Workable for sure. He said there’s no way to know for sure unless it is biopsied so always the chance that it is. But in his experience; and him being the hands that went in the first time; that was his opinion. I’ll take it for now. His case is being presented to the Johns Hopkins tumor board Monday morning; so we will have a whole committees opinion on if they think it is recurrence or radiation effects.
He’s okay! He hasn’t had a seizure since July 1st; keeping my fingers crossed of course. Once we addressed the brain swelling; his seizures stopped. He is currently weaning off the steroids now. He’s very close to being off. 2mg of decadron in the morning and none at night. And in 2 days he will be on 1mg in the morning and nothing at night; do that for a week then nothing. So praying that he does okay. MRI August 1st. Praying super hard everyday and every night. How are you!?! ❤️
So glad to hear things are improving from where you were guys were! We are all well - it’s funny to say that. Waiting for next scan in mid August. Treatment ended early June and radiation in July. Now just loving side effect free days!
kellyOd, this overall sounds like good news. When did Ryan go back on the Taf/Mek, just now? Is he going to continue with the immunotherapy? I will be praying that the Taf/Mek takes care of everything and he gets back on track again.
He went back on Friday evening. We had to wait to see the neurosurgeon to determine “his fate” with another possible surgery. So when he said he wasn’t doing it he went back on the Taf Mek that night by instruction of his Onco and neurosurgeon. He will discontinue immunotherapy. I guess the Nivo and ipi didn’t work for him 😕 thanks for the prayers; I believe fully they have been a big part of his journey.
He hasn’t had any seizure episodes since he’s been out of the hospital. So that is a fabulous sign lol, plus no more headaches. He’s upset cause it gives him HORRIBLE acne and makes him gain weight. He ends up over eating because his stomach never feels full. We can deal with that though 😊
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New member — husband stage IV melanoma
