Brain Mets Sisters
Comments
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just for the record i have absolutely no interest in losing weight - lost 10 pounds just from being all gaggy from Abraxane. ick - i'm going to have to buy ensure or something if this keeps up.. i'm at 130 and a muscular 5'2" so am not in the danger zone yet. my diving and cyclest weight was 110... pretty skinny then.
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I know, that's why I shared my experience with the ketosis concept.
Btw, this sounds so trivial, but the ginger candy and tea have been helpful for my nausea.0 -
Apple,she is a little angel:)
Question, sorry i do ask a lot here as i tend to get more answers from here than docs, did anyone have really uneven growth of hair after wbr? Thanku all xx0 -
my hair growth after chemo (i've lost and regained it twice) was certainly uneven, but regained even distribution and a more acceptable texture after about a year. i know.. too long.
my rad said it would be 6 months before hair would appear again.. this is my first WBR experience. I am likely to have very little hair since i am on chemo tht causes partial hair loss. I sure wish i liked being bald.
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Oh this is SO HARD. Especially when you've already lost it from chemo. Mine started to grow back at WBR in the 3rd month and t has been pretty even. About the same as chemo. Hard to say what the chemo will do too. I find myself scowling at women with hair!
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As sad as it is is it ok if i look at this as good news? I didn't know you could grow hair at all after WBR. Thus far I have only had gamma knife but assume WBR will be in my future...maybe not since liver mets seem to be growing more rapidly than brain. After two years of no hair, having been on xeloda for a year I have a full head of hair. I'm sure losing it again would be more upsetting than the first time. My mother had WBR and never regrew any hair, but she didn't live six months after the radiation so i was making a wrong assumption.
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@ Jill. Wow beautiful mom and daughter. The likeness in your smiles is amazing.
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it;s a teenager.. and a pretty one!
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Thanks...why was I expecting..."who do you think you are taking up the discussion board with large family photos"???
Took my three kids and daughter in law on a cruise a year ago January with an accelerated death benefit. You know..sort of like a "make a wish" foundation for dying adults!
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Great photos, Jill. You and your daughter are beautiful! I love large family photos, I think we need more of them. :-)
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Please please please keep up with the photos. I like to think of you gals in real life. Not this yucky part of it. Your kids are beautiful, and they tell me more about you, than these crazy treatments. One of my kids will have to post mine. I am a techtard, no facebook etc. They are whizzes when it comes to this!!
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Can someone please give me the symptoms of Brain Mets? I have been having a non stop headache for about a week. Not sure if it's stress or something to be concerned about.
Amy
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Jill, gorgeous photos!
And Apple, your daughter is beautiful. I hope my girls don't outgrow their cuteness and turn as awkward as I remember being in my teenage years. Braces, glasses, clumsiness, you name it!
Amy, I don't think there's any real standard symptoms - but I'd get it checked. I had headaches for about a month that wouldn't go away and had a ct and, well, am almost done(!) with five weeks of wbr. If for nothing other than piece of mind. Take care.
Hope all of you have had a lovely weekend with family and friends. Much love and aloha.0 -
Agree with others. Call your onc...time for a scan. Even after a week, our kind of "stuff" this can mean something. Don't panic though -- it is highly treatable.
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AMY check in with PCP as soon as you can. Persistant headache can mean other things besides METS. Hypertension----high BP, stroke. First thing I reach for as a nurse when someone complains of headache is the blood pressure cuff.
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thank u all for the inputs on the hair regrowth question, yes it is really distressing as is everything since the start of this journey, but i suppose have to get over this like everything else..
u guys r the best, keep your chin up all..sending positive vibes and hugs
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You advice was perfect., Bonn.
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Thanks, friends. MRI tomorrow on head and spine.
Amy
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i soooooooooooooooo wish you good luck Amy!
i had such a busy week last wee, (4 musician things) and then dinner fo about 20.
I arose at five as usual, went back to bed on the sofa with a book (unread) and a tv, and slept until one.. I am still super tired. another laid back day tomorrow. I have the week off from chemo so i hope to regain my appetite and eat a ton.
I have so much incentive to get long term gardening done while i am still here. ( livin on a fairly new, (actually it's an old cow farm) rather large property..
a place should be full of flowers. my legacy i guess.... and grapes, blueberries good soil, raspberries, hostas and flowering bushes.
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Amy, just for perspective, Ive had 11 tumors zapped but the neurosurgeon says none of them should cause symptoms. So my headaches can be from chemo, stress, etc. Best of luck with your outcomes.
Good info, Bon.
Apple, thank you for treating yourself to some rest!
Love,
Kathy
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Kathy,
My neurosurgeon says my tumor isn't causing symptoms either, but I've had the mother of all headaches the past few days, plus ongoing balance issues...just makes me wonder if sometimes the "textbook" doesn't explain our symptoms, but they are still very real.
Good luck, Amy. I am very new to brain mets and it is very unnerving to say the least.
Question for you gals about Gamma Knife. What is the recovery like? My nuerosurgeon makes it sound like walk in the park. My tumor is really small, so maybe it won't be a big deal. What about fatigue?
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BTW, Apple, I love your quote "a place should be full of flowers. my legacy i guess.... and grapes, blueberries good soil, raspberries, hostas and flowering bushes"
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Nancy, had gamma knife once..this past january..the tumor was also small. Don't recall any after effects at all...even the procedure itself was ok..much better than i expected. The placing of the frame was the worst part of it but even that wasn't so bad and it was very quick. Are you having it on the 24th?
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They gave me versed in the IV shortly after the placement of the frame and I slept through the whole thing.
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Well...I'm one week and two days into my WBR treatment. I had brain surgery 6 March and after three weeks of radiation, I will start chemo....again. I've been doing well...except for the bouts of nausua. Hate that my breast cancer came back....but I have lots of people pulling for me. My DH is the best and co-workers.....lets say...I would have thought!
Anyway...great posts really awesome!
Hugs and Kisses everyone!
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hugs and kisses to you! i am relieved to know that you've suffered nausea. (i thought mine was in part to abraxane, a chemo).. might be a double whammy.
i don't know if this is your first post here sharon.. welcome to the brainiacs
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Nancy, for me.......
The day of Gamma, they start an IV, give decadron. When the surgeon gets there, they push versed. I'm vaguely aware that he numbs the scalp and sometimes feel the frame being placed. Then to the MRI for scan-plan. They take awhile planning which is good. Then they take me to gamma machine, I lie on the table and they get very scientific with setting coordinates. Its like star trek. Time depends on how many lesions they're going for. It is far from the worst procedure I've had.
scalp stays numb for 24 hours and the "pin sites" are slightly sore. Have to take decadron for a few days. No dizziness or other pain that I'm aware of.0 -
Oh.........my brain mets have landed me in the ER/hospital 5 or 6 times since I was dx'd 12/29, with nausea, vomiting and dizziness. When it starts I can hardly stand or walk and have fallen several times, which is why I started using the walker, wheelchair and chair for tub. It's terrible, I am incoherent, the vomiting won't stop and my head feels like it's in a vice grip. However, I have not had what I refer to as an "episode" since mid March which is pretty good.
Tomorrow is another follow up appointment, we'll see what happens from there..........
Jenn
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