Brain Mets Sisters
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Hi Roro,
I'm glad you surgery is behind you. I had the same symptoms as you post-op, except my arm feeling tingly. Those symptoms went away about 3-4 weeks after surgery. I hope your recovery continues to be smooth.
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LFF,
Thinking of you today. Let us know what is decided about your ability to stay on the trial.
Love the picture of the two of us! So happy to meet you in person!
Stilts,
I actually took Mamentine for almost six years. I figured why not? Insurance covered it. But there was a recent study that found that it didn't work in general, i.e., for patients with Alzheimers, so I stopped taking it.
Hugs, Susan
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found out late last night, they kicked me out of tgg HT e trial. Although my initial decrease in timer size is still bigger than the “growth” the @groeth” was bigger than acceptable.
I already today got a call from my RO office about bringing him my scene. So off I go into Seattle later today as he is already looking into what can be done. I think they will look at treating the 2 big leadikns mentioned in the report and hopefully I can get insurance to g cy over the neratinib:
I still have options just don’t know what they are yet. Gotta trust.
Susan, it was nice meeting you snd I’ll miss ssn Francisco.
Stay safe everyone
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LFF,
So sorry to hear this. That happened to me when I was on the Piqray (Alpelisib) trial. Great initial response (40+% shrinkage overall), progression that still brought me to a place where I was better off than when I started, but I had to get off the trial. We can be grateful that, overall, we were helped by the trial drug and that we helped get new efficacious treatments approved.
From a selfish standpoint, I was so looking forward to showing you around SF. At the same time, I'm relieved you will not have to get on any planes. I treasure the short time we were able to see each other and hope we have another opportunity after we are let out of lock down. We had enough to worry about with the Stage IV diagnosis and now we have to worry about being part of a vulnerable population during a global pandemic. I know a couple of cancer patients who have had to indefinitely postpone their surgeries to conserve medical supplies like masks and scrubs.
Take care of yourself!
Hugs, Susan
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LFF, sorry you are out of the trial. Glad to hear there are still options for you.
Susan, you are so right. The world is pretty scary right now. I still don't fear the cancer for me but I do worry for others with the covid and hope we all avoid this infection.
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looking like cyber knife is in my immediate future. Gotta get insurance approval first.
Then I do t know. Nothing seems to be stopping brain Mets from turning.
One step at a time.
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Thinking of you LFF. Like you said, everything is day by day.
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Leftfootforward,
From my nose to yours, Happy CyberKnife!
I'll pray that it's as easy for you as it was for me. My only side effects were a bit of nausea and occasional vomiting for a couple of weeks.
My friend, Judy had brain mets and did Gamma Knife (essentially the same thing, only CK is easier) probably 8-10 years ago. The second year something showed on her scan and she insisted on a craniotomy which showed only radiated mush.....no MBC! I'm going to expect and pray you'll have these same results! God bless you.
Love from PatGMc
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Thinking of you, LFF. I hope this cyberknife zaps the mets once and for all.
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Hello everyone, can anyone share their experience with TDM1? I’m starting treatment soon and I have been reading posts but I’m looking for recent answers? Can you share some of the side effects and maybe if you used any alternative treatments while on it? Like supplements. I know about Gluthamine for neuropathy, but I’m interested in knowing your experiences. Thank you
P.s: I also posted the same question on the group specially for this medicine, but I thought I’d posted it here too.0 -
LFF,
I had gammaknife two times and both times it was very effective. They were even able to zap a 1mm tumor! The first time, I had to have a metal cage screwed into my head which was pretty uncomfortable and left me with small scars. The second time, I was able to use a mask so it was very easy. I think they only have to use the metal cage if you are zapping really tiny tumors. I didn't have any side effects from either treatment but the treatment areas were small.
Hoping you will get approval.
Hugs, Susan
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mapping day tomorrow- brain mri and brain CT. Meet with RO.
I assume I’ll have cyber knife next week or the newel after that.
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LFF thank you for keeping us posted. Best of luck with everything.
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hi Maureen
Yes I'm one of the lucky ones! -, I had a large met to my brain in early 2012 and have no disease today ?!
Yep I feel I got one more life out of the bad deal!
. My story is posted in this forum - as I had both surgery and then stereotactic brain rads . I do use frankincense each day , take curcunin and eat primary vegan diet . All plant based and I believe thst helps keep you clear of its return . I was on AIs for 9 years or so abd just went off then . Now I'm taking evistadue to bone loss and to lower my already low estrogen.
I've been doing exercise and meditation for years now . The worst thing about this is I can't use my right hand, well almost no feeling or power there so I rely on my husband and helpers to cut veggies and do household chores . I've written a short vegan cookbook titled Vegan health cookbook if you would like to get a copy of it . I'm a reiki master and offer that to all cancer friends too !
please feel free to connect via email if you need support advice or friendship .
healing thoughts and prayers to all here !MarciaM
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Hi there,
Just wanted to say reading Mara’s posts about how well shes doing are lifting me up big time. My mom was doing a well after gamma knife to brain metabolism but two weeks ago, she became so confused, then agitated. We had to bring her into the hospital and she’s been there since. They didn’t want to do an MRI so they did a a CT and found lots of swelling and possible new mets, they can’t tell if it’s Leptomengeal or not. She’s had 2 out of 5 WBR treatments so we are hoping her confusion improves.
LOts of love and blessings to all you brain mets ladies.
Bonnysgirl
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Hugs to you and your Mom Bonnysgirl. Hopefully once they bring down the swelling, the confusion will lift. It sounds like her poor brain has just been going through so much. I had a lot of swelling in my brain too and could cause confusion etc. It did go away once they pumped me full of steroids before brain surgery then WBR. WBR will leave her very tired and this is normal but if she has mobility and balance, have her get moving asap, even just a gentle walk to keep up energy and appetite. Hopefully the WBR will just knock back the mets and that the swelling goes down as well. That will give a better picture of how her brain is doing and level of functioning. If she was high functioning before the swelling and mets diagnosis, she should improve with treatment of both issues. Again sending my thoughts and good wishes your way to both of you. Please keep us up to date with Mom's progress and any questions regarding WBR. A few of us have had it and have kept going a long time. Treatments have improved a lot.
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SusaninSF, I have read/seen your health history and treatments. I just want to say, I admire your strength, how are you doing? I want to ask so many questions, but I really don’t know what’s appropriate and what not. I guess I’m impressed, if that’s the right word. This forum gives me so much hope. Xx, thank you for sha
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Hello everyone. Can anyone share their experience with gamma knife? Did you lose all the hair on the spot being treated? Things to beon the lookout for?
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Hey Roro
I had Gammaknife in 2015. No hair loss at all. You will have some fatigue day or treatment and maybe for a few days following. All in all it was an easy treatment with minimal SEs. Best of luck!
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I have had 5 different rounds of gamma knife. Never a problem and was my old self next day.
Only thing is I have a few divers where the halo went in but that’s only because I’ve had it s
Done so many times I think. And it’s barely noticeable.
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Goodie16, thank you. I’m nervous. I will be receiving gamma and radiation on the same spot. My new lesion is deeper into the cerebellum but smaller, and I just had a tumor removed from there too. So, hoping for the best. Prepping food in advance, leaving everything clean, etc. I expect for my body to be tired since I’m still recovering from recent surgeries.
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Leftfootfor, thank you. I hope I can breeze through this treatment. I have heard positive things about it, in regards to being effective so I’m hoping this is my case too. I’ll be starting TDM1 afterwards.
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Hello ladies;
Wishing all of you the best in outcomes !
you’re all so brave !
blessings to you alwaysMarcia
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I have not posted on this topic before, but I have very much appreciated hearing about your experiences.
I had my first brain met appear back in Feb (discovered because I had a follow-up MRI for dural mets). I had that zapped with radiosurgery. The procedure was fairly easy and I didn't have side effects, however, learning that the cancer had spread to my brain was devastating. I had a follow-up MRI this week and found out that while that spot was resolved, 2 more small spots have appeared. I will be having radiosurgery again.
I am currently on abraxane. The crazy part is that last month I just got my first good news in almost 2 years - my CT showed that the liver mets were shrinking. This treatment seems to be working and side effects are minimal.
Do you and your oncologists think of brain mets as distinct from your visceral mets when deciding on treatment? i.e. your systematic treatment decisions are based on liver/lung mets, not your brain mets. Are radiosurgery and WBR the main tools for addressing brain mets?
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scary in my case my liver and brain Mets are different but t Nd at I believe mostly is due to the fact the BF st it is hard for drugs to get across the blood brain barrier. I have been stable systemically but not in my brain for the past 2 years.
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In my case, though mets are same as original dx, they're treated separately. MO for neck down and RO for brain.
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Roro, I’ve had gamma knife 3 times, no fatigue or hair loss. The worst part for me was the scariness of the numbing meds for the head frame as I am very needle phobic. It’s doable though.
Sary, yes, typically brain mets are treated with radiation, especially if your meds are working for meds below the neck. Not many systemic treatments cross the blood brain barrier but the good news is that rads to brain mets is often very effective and quick with few side effects.
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for those who have had WBR, what were the number of your treatments? Right now they’re only giving mom 5.
Thanks,
Bonny’s girl
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I had ten WBR treatments in 2016.
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Thank you ladies for your quick replies. You are a generous group!
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