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
So, still slight expansion of area again last month. Next MRI moved to two months instead of three again and new scans again sent to neurosurgeon. I am pretty sure that the scan next month will be a discussion of treatment. Treatments are all a horrible joke of which terrible thing do I hate the most. So, what is the safest option? Surgery to confirm that it is radiation necrosis and not a met? With surgical cleanup? Likely include a big dose of steroids post surgery. Just assume RN and treat with lower dose of steroids to avoid RN growth? Hyperbaric chamber?
- February 9, 2023 at 11:40 pm
I’ve had brain surgery three times and always walk out with something wrong, although granted the biggies were for my regular brain tumor not brain met. The last time (brain met, surgical removal, followed by single dose of radiation, while on immunotherapy) damaged my hearing and I have spent the last couple of years trying to restore it. Had surgery for the Eustachian tube which has now failed. Likely need surgery again. All of that means I am very poor choice for hyperbaric therapy.
Really hate hate dex. Spent five weeks in 40mg of dex due to hospital mistake. Absolutely crazy. Finally discovered and then dosed down too rapidly and ended up in the hospital with sepsis. Also had to have my big toenail removed.
So, devil’s choice. Any idea what is the best choice?
Unfortunately my little boy finally got Covid. And two family members started feeling poorly. So i went to a hotel with the non-sick kid. Took to school, ran some errands. Had a massive seizure at CVS mid-day. Apparently I had picked up covid after all and although I was and remain symptom-free the virus irritated the radiation necrosis in my brain. I spent two days in the hospital while they gave me the good Covid drugs, dex, and anti-seizure drugs. And now I am out taking all three drugs. So lots of appointments to come. And terrible for me, a six month driving restrictions which is absolutely awful with kids. Ugh. I really wish we had acted sooner to control it. At least no was hurt. I remember very little but apparently it was pretty spectacular and I was lucky I was by the pharmacy.
- February 15, 2023 at 10:57 pm
I’m sorry to hear you are dealing with this Judi. If it is any consolation, I’ve wanted to lose it in a CVS before! I hope your situation improves quickly, without a lot of side effects, and that things will calm down. As the father of two little ones, I feel that the driving restriction may be worse than the meds….
- February 16, 2023 at 5:24 pm
In your previous message you seemed to be looking for some counsel. I’m not sure I can offer much advice for your situation, as it is very tricky and unique. Maybe a second opinion is in order to kick the tires on your Oncs’ plans going forward? If you are near AU (American University) I can recommend Dr. Brandi Page (radiation oncology) at JH in Bethesda – she has helped talk me through my brain issues many times.
Thanks OnJnAnT. Ironically I was being watched and I do think they would have treated at my next appointment. And when I arrived at the hospital they prepped me for surgery the next am. But my MRI came back in a good shape. The seizure was just triggered by Covid. Still I am on a new, tortured path of heavy drug use and restrictions. I always thought Covid would be bad for me but I couldn’t predict how.
- February 16, 2023 at 10:47 pm
So I met with oncologist today. Still testing positive for Covid but limited if any other symptoms. I was released after two days of heavy drugs. No reoccurrence found. Just need to treat the swelling that popped up from Covid irritation. Can cut the dex in half thank god, keep a high level of kepra, and take a few doses of Avastin. All three are expected to reduce the inflammation pretty well. Then it will be just waiting out the time so I can drive again. I got very lucky with the timing because I had already been driving all around that morning.
- February 21, 2023 at 6:56 pm
Just thought I would update. I have now been through the ring of neurologist, neurosurgeon, and oncology; reduced dex a lot, am still on a horrifying amount of kepra; have completed two of three Avastin infusions. Everybody seems to agree the seizure was just a unique, targeted attacked by Covid. Have not developed any new neurological issues and the flaring of the small amount radiation necrosis hasn’t led to anything. My next routine MRI is being pushed back until after I complete the next and possibly Avastin dose. No reaction to that drug. Regardless, I still lose driving privileges for at least 3 but probably 6 months which is a huge pain. I do live really centrally so I can manage pretty well but the drugs are hard so they are my primarily limitation
- March 19, 2023 at 10:56 am
- March 20, 2023 at 11:16 am
I’m glad to hear that you are doing better, and that you haven’t had any new neuro issues since cutting down the dex. I was on keppra for a while. I think it did contribute to some fatigue and irritability, and I was probably on a smaller dose than you. Looking forward to hearing some good news on your next MRI, and that you’ll be able to reduce the drugs even further. Here’s to some nice spring weather so that the public transportation is easier to manage over the next several months!
Oh, Judi! Just catching up on your most recent ordeal! So sorry you have had to deal with all this. Feels weird to say, “Oh, glad it was likely all just due to COVID!”….but there you go. I know all the drugs must make you feel yucky! Hang in there. Hope all the yuck resolves soon! les
- March 20, 2023 at 12:03 pm
Well here I am updating my seizure journey roughly seven and a half months later. Why so specific, you might ask? Well, I never had another seizure. I never had any complications from Covid. I never had any issues from necrosis. The drugs caused a reduction in visible necrosis and I never developed necrosis symptoms. I have never had melanoma progression. I have spent all this time on truly god awful amounts of steroids and anti seizure medication. I have got to tell you, I am tired of trying out other people’s diseases. Epilepsy is a terrible disorder but not one any of my doctors actually believe I have but I want to drive and in CA, is the protocol. And because my brain already has a custody and post Mortem plan I had to wait a long, long time and jump through a lot of hoops. So one Covid seizure = 7.5 no driving. A minimum of two years of anti seizure medication, which feel pretty much like dexamethasone, except when I also had to take dexamethasone. That was worse. Haha. My oncologist treats me like I am one of the great winners in life but I have a pretty weak smile. Still here. Still alive. No progression. Able to drive.
- October 3, 2023 at 10:59 pm
- October 7, 2023 at 10:54 am
Thanks so much for your update – so glad to hear the seizures haven’t returned.
This necrosis thing can be very complicated.
My partner recently got his brain MRI 6 months post SRS to 3 x tumours and 3 cycles ipi-nivo
Everything has shrunk to almost nothing with nothing new (yay). However the report also says
‘There is some apparent subependymal enchancement (but no concomitant non-contrast signal abnormality) affecting the floor of the 4th ventricle in the caudal pons – could therefore be artefact but exclusion of any left VI or VII cranial nerve palsy should be undertaken on clinical examination to assist in excluding a new site of metastatic disease as well as repeat brain MRI in 6-8 weeks time’
In laymans terms, they basically said they hope it’s a just a bit of post-treatment effect but want to do a repeat a in 6 weeks time too make sure nothing new has popped up there..which is fine by us!! Really hoping it’s just gliosis and nothing new to worry about.
Just can never really quite relax with these brain mets!
Yes. Unfortunately it is very difficult to distinguish between metastatic disease and necrosis and very often, other factors help make the final decision. I hope everything turns out well.
- October 7, 2023 at 5:01 pm
Just thought I’d give an update on how all this is turning out.
- November 30, 2023 at 3:38 pm
Last week we received the results of the interval brain MRI to check on the suspicious area of ?inflammation vs metastasises.
Report read ‘no evidence of any new intracranial metastases seen. No evidence of active cancer seen in previously treated metastatic deposits. Subependymal enchancement seen in previous study not present – likely motion artefact’
Our oncologist is pretty confident he has had a complete response to treatment.
Amazing news! So relieved he’s had such a positive response.
Hope this gives hope to many others out there !
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