Can anyone answer questions?
- July 19, 2022 at 11:30 pm
So I finished two years of IPI/NIVO and have been receiving a “booster” of nivo at my request at the quarterly scans for one year. In my last scan I had “something” new pop up in my brain MRI and after a week of live-die-live I have a few questions. I read through SoonerJen’s thread and also read some in your blog Bubbles. Always so helpful.
My stage IV was found by a fat, growing rapidly at less than three months old, brain met. I had very little tumor burden elsewhere. Two doses of ipi/nivo followed by craniotomy followed by a single session of radiation. Continued two doses of ipi/nivo and then completed two years of nivo. Had a low level of corticosteroids but weaned off them before I ended immunotherapy. No tumors throughout this time. No bad labs.
(My Eustachian tube was damaged in the surgery so I spent those two years trying to fix it, including another surgery. I have various other problems but they are damage from earlier tumor treatment, not melanoma.)
My oncologist clearly seems to think it is a reoccurrence when he sees my MRI. Arranges an appointment two days (!) later with my neurosurgeon. Schedules brain MRI follow up in one month. Neurosurgeon thinks it is necrosis. I have no symptoms. He is smiling. But when I get home, I read the lab report that does not read like necrosis.
“1. A 0.9 cm enhancing lesion in the left insular region with associated surrounding T2 FLAIR hyperintensity, consistent with intracranial metastasis with associated vasogenic edema.”
There is a 0.9 cm enhancing lesion in the region of the left insular region with associated surrounding T2 FLAIR hyperintensity (image 102, series 12). This lesion corresponds to a linear area of enhancement on the prior examination that previously appeared to represent a vessel.
Stable postsurgical changes related to prior left frontotemporal craniotomy and left suboccipital craniotomy/cranioplasty are again seen, with chronic blood blood products again seen within the surgical beds. There is a stable 1.5 cm dural-based enhancing mass within the left Meckel’s cave (image 59, series 12). Stable areas of T2/FLAIR signal abnormality in the left greater than right anterior pons and left cerebellar hemisphere are seen, compatible with gliosis. No new enhancing lesions are seen within the brain parenchyma. The ventricles are normal in size. There is no midline shift. The scalp and calvarium are otherwise unremarkable. Atrophy within the left pterygoid muscles is noted. There is near complete resolution of the previously noted postoperative change related to prior left tympanoplasty.
So, does necrosis get worse? If I have no symptoms can it be ignored? But if it is bad is that worse the reoccurrence? Or does this sound more like reoccurrence? MRI was done with contrast. CT was fine.
marta010ParticipantHi Judi – my husband is in year 10 of fighting brain mets. His neuro often has a different take on the scans than the radiologist does. It’s also difficult in some cases to accurately distinguish a melanoma tumor from necrosis. We’ve been watching an area (uncertain whether tumor or necrosis) in my husband’s brain for about a year now and as long as it doesn’t cause symptoms, his neuro is ok with waiting. Of course, while we were watching this one, another area snuck up on us between MRIs done every two months! We’ve been treating with the same neuro since 2012 and trust his instincts. In past brain necrosis situations, he’s had Avastin which worked extremely well and Dexamethasone which is the devil. Not sure if this helps with your question or not. Let me know if you have any questions. Take care!
- July 20, 2022 at 1:40 pm
That is helpful thank you. It is good to understand that there is some ambiguity about how to interpret these things. I had a pretty terrible journey with high doses of dex and hate it so much. Glad to hear there is another option. I just get all the side effects and complications so I am skittish about my prospects.
- July 20, 2022 at 2:02 pm
- July 20, 2022 at 2:36 pm
I’m so sorry to hear you are in a similar situation as me. I don’t feel I was given enough information to make decisions, but I know they are waiting for the next MRI to see how things are going. I hope all turns out well for you!
- July 24, 2022 at 1:32 pm
So sorry you are dealing with ONE MORE THING!!!! Like you, I am not sure what to think of your situation. Yes, necrosis can increase, but dead tissue does not “light up” so that makes the radiology report not entirely consistent with what the neurosurgeon had to say. So I would certainly be asking about that! In your shoes, I would want the onc, neuro, and radiologist to have a serious confab! Or perhaps see a second neuro for another opinion. You (or your onc) might even get this to happen virtually, as all they really need is to review your history and scans as you are not symptomatic.
Will be keeping fingers and toes crossed that this is just a red herring. Hang in there, sweetie! Yours, c
Thanks Bubbles. I did have a have brief phone call follow up with my oncologist and he didn’t think it was something to worry about. And no hideous treatments or drugs suggested. But still, I was scheduled for a one month MRI which is not “nothing,” so we’ll see. All of the comments were helpful to understand, absent other indicators, that these issues can be ambiguous. I find it so odd that the issues is with a spot I had a single dose of radiation with.
- July 25, 2022 at 12:18 am
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