Brain Mets Sisters
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Kaayborg, I am sorry to hear you joining us. I have been through brain Mets since 2016. Did WBR IN 2016 and had local recurrence in the surgical site and did SRS recently. WBR can make a person tired, during and after treatment. I also lost some some hair permanently. Wigs are great things. I have no known cognitive impairments.
My best advice is stay physically active if you can since that helps a lot. Do not read a ton of old reports on survival, stay away from anything glioblastoma since that will not apply. WBR has helped quite a few of us. I am still fully functional with good qol. Rest when you need to but keep active. Focus on protein, food may taste weird temporarily but that does go away. PM me if anything else comes up.
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denied again by insurance fir gamma knife in my multiple mets. I am onto the external review appeal. Wish me luck.
All the while my brain mets grow. Sometimes insurance sucks
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Good luck left foot forward!
Well, here I go again, up early, dressed in scrubs and ready for Gamma this morning.
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Good luck illimae!!!
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Good luck with your treatment! 😺
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Good luck Mae...
Left foot insurance makes me angry lots of times
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Waiving hi!
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Was trying to go down on dex mouth was getting really effected so going back up to 2mg daily instead of every other day. Hope it helps..
Dr told me today 2 years at most, trying hard not to obsess about it because I know he could be wrong, but these brain Mets are knocking me down.
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keetmom- I was told in Dec 2012 that I had a year maybe 2. ( multiple liver and brain lesions).
I’m still here playing whack a Cancer .
Take one day at a time and don’t give up hope.
Thinking of you and everyone else
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Keet...with 20+ brain mets (2 bigger than 4 cm), they didn't expect me to be around after Christmas, 2017.
I'm still here.
EFF the DAMN drs, I say. What do they know? Can you get access to CBD tincture? It's supposedly legal in all states because it can be processed from HEMP. I'm using that, and I do believe it's helping.
L
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Left that gives me hope.
Lita just started using cbd oil, it doesn't have thc because it isn't legal in my state.
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Keetmom, don't allow the doctor to offer a prognosis. We are not statistics. We could go much longer, we could be shorter. Go with how you are feeling. Are you able to go out and about and do what you want? If so, that is a good day. I was told to get my affairs in order in july 2016. I had WBR then more recently SRS to the original site of my lone brain met. Still feeling good. Don't let anyone tell you how long you have left. Worrying about how long you have left steals any joy you might have.
illimae, belatedly waving back to you. Sorry to see the halo back on your head but glad you got your treatment in.
LFF, good luck on the insurance front for gamma. Just curious, if they won't cover gamma, what are they willing to cover instead?
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Leftfoot, I am so angry at the insurance company for you. It's a real shame how they can delay treatments for us. I hoping you can win it on appeal and soon!
Illimae, I hope all went well with your treatment.
Keets, don't allow the onc to put an "expires by" stamp on you! I've been here for 3 years with a brain met and those have been NED years. Hang in there!
I hope everyone has a good weekend! I'm so ready for Spring in the Northeast.
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Keetmom, I’m sorry that your MO handled it that way, I think any setback should be dealt with in an honest but positive manner. In this case, your MO was neither, he/she doesn’t know anything that far out into the future and should be more focused on the next step in treatment. I’ve left a couple of dr’s offices feeling defeated, now I just tell them not to sugarcoat anything but don’t give me bad news with giving options moving forward. Big hugs!
Speaking of options, if I didn’t already mention it, the neuro onc i met for possible lepto mets (thankfully none found for now), said that Brain Mets patients are living better for longer, treatments are advancing quickly and we are getting more out of current protocols. She mentioned having two lepto patients who’ve had ommaya reservoirs for treatment for 7 years. And yesterday a gamma nurse mentioned a patient who’s had GK several times over the years, a few here and there, 38 in total so far, and is doing well.
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Very encouraging to hear from you all. Waiting for #3 of 10 wbr. So far so good. Still having trouble with nausea and balance though so haven't attempted going back to work yet. Tired too. But that's not so new really. Meeting with RO again today too. He mentioned the drug you mentioned Lita at our initial consultation but haven't started it yet. Will make sure to bring it up. Had to buy a double pill box today as this pill popping is becoming a full time job. Not sure I'm loving all the steroids either.
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Kaayborg, the steroid SE are tough for sure but they are so beneficial on symptoms. Hoping rest of the treatments are kind and get rid of the nausea and balance issues.
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Kaay, if u decide 2 go on Namenda/Memantine, get on it as soon as u can. You have 2 build up the dosage over the course of a month until u get to 20 mgs per day.
L
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Hi, i wanted to ask you what can we expect with brain mets. My mum diag was yesterday... they qhave told us whole brain radiation but we dont know what can she get with the radiation.. how long are you without progression? Any ned?
She has multiple brain mets lower than 1,3 cm
Greetings...
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I had WBR last September for 20+ brain mets....two of them in the cerebellum are OVER 4 CM in size.
I'm still doing relatively okay. I will have my third brain MRI in a couple of weeks to see if they are growing again.
Any day that I can still see (I used to have a HUGE blind spot before Rads), get out of bed and walk with my cane/walker, and string two or three coherent sentences together is a GOOD day
).I can't speak for the results you may have from WBR. It helps most people, however. It does depend on WHERE the mets are located within the brain, how BIG they are, and how much damage has already been done by their presence. A couple of ,mine were pressing on my optic nerves pretty bad, so that damage is still there.
Other than that, I'm grateful to still be here. (Becaise of the SIZE and NUMBER, I wasn't supposed to be here past Christmas/New Years, and here it is, April.)
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Thank you for your reply, i wish you lots of luck
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finally got the insurance denial reversed. I will have gamma knife in Wednesday May 2nd.
Reality is setting in. I’m a little scared. But do happy to know they will zap all the little suckers. My MRI is the day before and I woAnderson how many more there are or how much they’ve grown in a month.
Getting our schedules all rearranged and finding homes for my 4 my kiddos the day before and of the procedure. So many moving parts.
Soon however they will be zapped and I hope to not have to worry about brain mets again fir a long while.
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leftfoot that is great news! Good luck with the proceedure and I'll be thinking of you!!
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leftfoot, I see “Anderson” in your post, is that a typo or are you getting treatment at MD Anderson? Also, is this your first gamma? I ask because I had my 2nd Gamma at MDA last week and I’m happy to answer any questions.
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I'm so glad you got the insurance denial reversed. Best of luck with your treatment!!
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left foot forward - so glad the insurance folks found their heart. I don’t even get their reasons many times. For cancer or other life saving treatments. It’s a stress you shouldn’t be dealing with on top of everything else. Sending you good thoughts for next week!
Jose
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illiemae- sorry that was s typo. I’m all thumbs these days. Thanks for your response.
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LFF, happy to hear about the reversal. Best of luck.
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LFF glad to hear they approved it.
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if your journey with brain mets started with a craniotomy how many weeks later were you advised to get treatment to the tumor bed?
In my case I was told 6 weeks but it ended up 7 weeks later.
Ann
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Hi Ann
I was advised to wait 4-6 weeks before having Gamma to the tumor bed. I had my gamma 5 weeks later. No problems.
Carrie
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