Brain Mets Sisters
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Thanks Freakzilla. I will see if it is available where I am.
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Mara so sorry for this finding, maybe you could try Boswelia vitamins, look into it- is recommended for swelling, swelling of the brain area, inflammation.check it out, a lot of ladies take it and they said it's very helpful.
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Thanks momatt, will find out what if anything we may do. Holding hope it is like a couple of people said above, tissue inflammation. Still don't have any symptoms, so would imagine I will have more MRIs in my future.
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Abemaciclib has now received FDA approval. It does show activity against brain metastasis for hormone receptor positive patients. Something new to ask your Onc's about.
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Finished my 20 WBR on 9-11-17. Has anyone experienced nausea &heartburn? Nausea is just slight, enough to be annoying. Any advice would be appreciated 😁
Wanda
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Wanda, I did experience nausea and heartburn for a couple of months due to the steroids. Nausea, am not sure but I blamed the radiation itself since was not on any chemo for almost two months after finishing my WBR.
I was prescribed ondansetron for nausea and rabeprazole for the heartburn. If the nausea is everyday, mention it to your onc but I would not worry too much. I also cut my ondansetron in half if I did not want to be too drowsy as well. It still worked well for me.
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Mara,
Is this necrosis in an area where you didn't have an original tumor? We all have necrosis where the tumor used to be if the radiation was successful. The brain cannot expel these dead cells so they just remain in the brain. It's also possible to have some necrosis due to the radiation. However, I don't believe it is something that will spread, unlike cancer. Why would you prefer it to cancer?
Hugs, Susan
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Not all patients treated by radiation to the brain have necrosis. My wife has had 20 odd lesions treated by Gamma Knife, and has no necrosis.
The problem with necrosis is that it seldom resolves by itself. It can continue to grow like disease, if a lesion is disease or necrosis, it can still cause the same problems. If the enhancement does prove to be disease at least it can be treated by SRS.
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Thanks Freakzilla. That's why I was saying that if it was a local recurrence of the brain met, it would almost be better than necrosis since necrosis DOES grow sometimes and cause similar symptoms to a tumour and it cannot always be surgically removed. Avastin may not be available to possibly treat necrosis. It would possibly mean an extended period of time on steroids. Unlike Gamma Knife which could locally treat a tumour which I know is an option for me.
Having said that, I would imagine we will keep watching the area. Since there are no symptoms, we will most likely continue a watch and wait. Probably will have more frequent MRIs as well. I don't imagine we would poke the bear. I will find out more info on Thurs when I meet my new RO.
On a positive note, I continue to be NED from the neck down which is good. Continuing walking like a demon since it makes me feel really good and boosts my recovery from WBR. As you all know, I had that last year and have not lost anything memory wise. Even the short term stuff is better than it was. Fingers crossed that the new spot is treatable or just inflammation showing up. Not looking to do anything in the short term.
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just had a 6 hr partial awake craniotomy to insular area of brain to remove 3cm of necrotic grossness. The good news is no more treatment since it was necrosis but I am still waiting on pathology to confirm what the surgeons could see and what they told my family and I when surgery was over.. overall wild experience. Happy its out as it was progressing and making me feel overall terrible
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Mamma, terrible vision problems: I saw auras, mini rainbows, grey, opaque spots, and lost some peripheral vision.
Are you having similar problems?
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Pagej, continued prayers for your craniotomy recovery. I hope the pathology comes back clean. Much love to you.
Mara - congrats on NED from the neck down, that's a big deal!! Hopefully the RO appt can provide you with some answers and a plan moving forward.
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I have to get a MRI to the brain, very scared, dizzy,!headahes and flunked yer test on pheriferal visson tests at eye doctors, I need help
Paula.
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Paula...you can PM me. I know EXACTLY where you are.
No fun. I was a frickin basket case. Doing better now after Whole Brain Rads. It's doable.
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Paula, hugs from me as well. Both Lita and I have had treatment and can offer perspectives once you have more info. Feel free to PM me too for moral support and help as well. We brain mets gals/guys are quite friendly and supportive when you need us.
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thank you so much
Paula.
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Paula, hugs and here if you need me. Just finished 20 treatments for WBR. This is a great group!
Wand
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wow, i had no idea dead tissue in the brain could spread....i've had 7 gamma knifed and we still saw the necrotic tissue on the scans....it took some time but eventually my body cleaned all but one right out of there, no sign of it after a year. now i'm worried bout the one thats left
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Necrosis can't spread, but it can get bigger. It's probably remenance of the disease you can see and not necrosis.
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Weekly 1952,
thank you so much!
Paula.
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lots of questions while I wait for my oncologist to get back to me. But one most important question is
1. Found I have skull Mets and what comes next?
Did you have symptoms with skull mets. I’m so confused right now it isn’t funny. I just sit here and cry of the unknown.
This is what the mri says
***Extensively abnormal marrow signal intensity is noted within the included portions of the upper cervical spine. There are scattered areas of T1 hypointensity within the calvarium. These findings are most consistent with areas of osseous metastatic
disease.
The visualized aspects of the orbits are unremarkable. The paranasal sinuses are aerated. Mastoid air cells and middle ear cavities are also aerated.
IMPRESSION:
1. There is no MR evidence of intracranial mass, hemorrhage, or other acute intracranial abnormality.
2. Areas of abnormal marrow signal intensity involving the upper cervical spine and calvarium, most likely representing osseous metastatic disease.**0 -
I had LOTS of symptoms: pounding, unrelenting headaches; visual auras, seeing rainbow spots, seeing grey, opaque areas of vision, and loss of peripheral vision; dizziness and balance issues; a weird "whooshing" sound in my ears when I would stand up.
Yes, it was bad...then again, I have over TWENTY brain tumors, and two of them are over 4 cm in size, and they were bleeding, to boot.
L
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Dayezroze, I am sorry to hear about your skull mets. I don't have personal experience myself but do know depending on location etc, they can cause some similar types of symptoms as brain mets.
Depending on location, chemo and or radiation may be used BUT once you get more information, you can at least get a treatment plan in place to take care of it. That will be the next step for you.
If you want to find out more re skull mets, I would also search skull mets to pull up some threads that deal with that. It may help provide more insight into treatments, symptoms etc.
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Last nights MRI, prompted by a 6 day migraine type headache revealed 5 tiny lesions to the cerebellum. More scans tomorrow, I'm so pissed off right now!
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Aw, gees. illimae! I'm sorry for this rotten progression.
Well, all I can say is, "Welcome to the Brain Mets Club!"
At least your lesions are small. I have OVER 20, and two of them are pretty big: 4+ cms.
Hopefully they will be able to zap yours with a cyber knife or gamma knife, and that will be that.
I told my palliative care doctor last week that we'll be seeing a lot more of this in women as we are actually living longer with Stage IV these days. He totally agreed with me, and said it appears to be a natural part of the progression for some women.
But that's not very comforting.
Yes, I was pissed as hell, too, when I found out about mine a month ago. I'm STILL pretty pissed, as a matter of fact.
We will get thru this.
L
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Thanks Lita, I appreciate it
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Illimae, I too am sorry you find yourself here. There are quite a few of us that can help out with info once you have more info on your treatment plan. Brain stuff sucks but is doable.
I found out I have two new lesions, very tiny that we will have to radiate. This would NOT be another round of WBR but targeted to the lesions only. Probably will be done in the next couple of months. On the plus side, RO thinks they did not grow fast due to the WBR I had before. The old leftover tumour from surgery is stable and not acting up. On another positive, it is being handled as more of a local recurrence since it is where my surgery was located. I have no symptoms so doc watch and see but will probably radiate while they are still tiny. Sucks but I can't have everything. I continue to be NED below the head. I will take that. Put all my stress into my two walks today. Was a beautiful day for walking.
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Mara,
So sorry to read that you have two new lesions. Can you tell us more about your original surgery? Did they have to leave some of the tumor there because of the location?
Glad that you can focus on the positive, that you're NED below the head. I'm sure they can just zap those suckers with gamma knife.
Hugs, Susan
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Susan, yes they did leave a tiny amount of original tumour since it was wrapped around a blood vessel. That spot is stable after WBR. This is local recurrence and you are right, the plan is to zap those two spots. We are doing one more MRI to see if bigger but my RO wants to take care of them while still tiny. I am fortunate that I have no symptoms.
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I met with the neuro rads docs yesterday, they reviewed my case and MRI and have scheduled gamma knife for 10/20. The thought of a metal contraption being bolted to my head freaks me out, hopefully it's not as bad as I imagine. But I am determined to deal with this and move on.
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