Brain Mets Sisters
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Hi Spark. My mouth hurts too. Vanilla ice cream and warm salt water rinses help. Don't rinse with the ice cream!!! Cold bland foods help!! Try dry crackers with your pain meds. They helped my sister when she broke her foot. I can't take pain meds for that very reason. Advil is it for me. That and Adavan. You do sound better, if not still living through the side effects. 3 weeks? Wow. Another 3 weeks, and you will feel way better.
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My weight is good now.. i weigh 125 which is still pretty slim, but i don't look gaunt. The lowest i weighed was about 115 and that was pretty alarming for those who knew me.
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Hi everyone just an update my mum has just spent a night in hospital to be re hydrated
she is finally keeping food down! And she has her first round out of the 5days of WBR on the 3/9 woo hoo and we see the oncologist on the 4/9 started to look good
And what can I say apart from you ladies are my Heros
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Any advice about these painful shooting pains down my legs and arms??
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Spark....id have to say see your best doctor. Asap in case nerve compression which could worsen.
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Spark,
I agree with KLo. You have this checked out. Have you have a spine MRI?0 -
Hi all, I am writing on this board for my mother. She had orig been diagnosed with er positive breast cancer after a lumpectomy. She had radiation and was on tamoxifen for 5 years. She had zero nodes at diagnosis and clear margins. This past July, after 13 years of clear mammos, she began to notice a fine tremor and weakness in her right hand and numb left finger. Her PCP sent her to a neurologist, who then sent for brain MRI which revealed 25 nasty little mets! Shocking to us all... Pet scan revealed 2 cm lung mass, left adrenal met and 1 tiny rib met. She is er+ and her2+++. She starts her Perjeta/Herceptin and Taxotere regimen Friday. Plan is 6 sessions every 3 weeks. Oh, forgot to mention she's already had whole Brain radiation and feels a little wobbly and unsteady from it, trying to taper off decadron currently.
Just looking for some glimmer of hope....can anyone share how first session on perjeta went? Was it worse second time around? Anyone else on here with brain mets that's tried this regimen? How well do the brain mets respond to radiation (er+ her2+++)?Thank you in advance.0 -
How stupid am I? Find it difficult to sit down when I feel ok and feel the need to do stuff. So pretty busy day involving washing, a bit of painting, hanging my sons blind, getting ready for the carpet fitters etc and then I thought I'd get some new linens for the beds from the cupboard in the bathroom. Juggling two baskets and the next thing I know I've fallen off the chair and cracked the back of my head on the radiator and there's blood everywhere.
Fortunately DH is practical and ex-nurse. Thinks it might need suturing but managed to make up some butterfly strips to hold the edges together.
Worried that it hit part of where I had WBR so have taken some paracetamol and Dex just in case of swelling and will call the radio team tomorrow.
Just feel so vulnerable and more like 70 than 50! Stuff like this really knocks my confidence and makes me question what I can do now (unhappy face)
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Sending you all warm hugs!Your Mods0
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Hope all is well with your head, Laurie; sounds like it wasn't climbing on the chair that did it but the circus act with the baskets - maybe it's the juggling you should stop!
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Whoa Laurie. How much adrenaline did that give you? Have you been for sutures?
I fell spontaneously in the kitchen in front of my sisters in law. Some of it is medication. But Id say its possible that I DO have to act like I'm 80 now, in terms of movement. Even in Gentle Restorative Yoga, I nearly passed out. I guess we arent as normal as we look and should take care?
Bless your littel head laurie.
Formama, I hope you have a good team with whom you can communicate. I personally cannot give anyone a forecast as life changes every month here. Best of luck.
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spark, try to get some spinal mri - i had some right hnd tingling and shaking and they found spots on my c-spine and thoracic spine. just to make sure. I figure with all the scans we get, one more isn't going to hurt.
Laurie, take care of yourself! My team gave me a walker yesterday. Not even 40 yet and now I have a walker. I've been falling at home and made the mistake of both telling them and almost falling in front of them at the clinic. Good grief.
formymomal, I haven't had perjeta but it sounds promising! wbr wiped me out for months after it was done. I finished in April and have been doing other stuff since then. Intrathecal herceptin for now.
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Ive been getting occasional cramp on both hands. Trying not to panic.. Also, anybody else got weak quads? I can barely get up and think it may be the stroids.
Stay in the present and live each day as it comes. Stage IV from the get go June 2011. ER/PR+ HER 2- Liver, lung, bone, lymph, brain, peritoneal and pelvic mets - Man this list keeps getting longer...0 -
Laurie,
I have very weak quads since I started the steriods. I feel like I fall over when I try to walk. I can tell it is weakness vs loss of balance. My onc recommended theraphy in the pool but have been too tired and lazy to drive there. Hope you are feeling better and resting after your fall.0 -
Have finally succumbed to a wheelchair for fun trips. Today we went to Francis Ford Coppola's winery for lunch. Normally I would have walked hanging on to someone and still staggering like a drunken pin ball. The wheelchair is humbling, but what isn't? I had a fabulous time and the view was stunning!!! Tomorrow, is the wedding shower. I am definitely using the chair. My right side just drags. I miss my arm and leg so much!!! That was all caused by the brain mets. It hasn't gotten better or worse. It's like my brain and right side have been unplugged. No connections. Dammit. I don't want to fall. I am afraid of nothing to break a fall. BTW If you can do it, coffee is my best friend as far as headaches. The adavan keeps me from being too wired to sleep. I take it about 2 hours before nighty night time. That and wine. The only drugs I take is 4 mg daily of decadron. It makes my overall feeling of wellness better, my appetite ridiculous, and not so ready to commit a homicide. I hope everyone is onward and upward!!! xoxox Jodi
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Jodi and Alesta,..... neurologist? Im thinking of all the stroke rehab that a tiger like Jodi could dive into.
Alesta, no answers from MO? Not neuopathy? I have it pretty bad in hands and barely any knee reflexes but she has never offered neurontin.
However, I have given up Hydrocodone completely with fentanyl patch at the ready.. But my new naprosyn and tramadol are holding the pain down. Who knew?????
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K- Lo, you are always so sweet. I tried PT but this is neurapathy. (sp) Its like the signals have been jacked. I am not curled up like a stroke victim, but there is no way my right sided limbs will cooperate. I wake up to my arm being stuck whereever it is. They were having me separate macaroni with my right hand!! Absurd!! I feel like the only thing that would work, is to be plugged back in. I am the best at being a switch hitter. Totally left handed besides drawing my signature, when needed. You would be proud! Everything has to be cut into bite size pieces, but isn't that what my family lives for? xoxo
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It IS the steroids tat will make your quads weak. My radiologist, who prescribed the steroids, didn't mention it, but my oncologist mentioned that's where steroids have the biggest side effect. I went OH...that explains a few things!
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after I had my seizure, they gave me a walker at the hospital.. I was amazed at how well it worked.
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Hi all
Alesta, you really are a bit mad trying to do those circus tricks after WBR and while on stroids. The dex does make your legs weak. I am much more wobbly when i take them.
K-lo, I was really anti using a wheelchair, thought it would be admitting defeat but i have decided to go for it and i have to say that it makes everything much easier. We're off to Westfield today (biggest shopping mall in Europe apparently) i shall be using an electric scooter
Back from Croatia and feeling really rather well
i did use a wheel chair at the airport which was great. you get 'fast tracked' so no queueing. The kids started off saying they didn't want to walk with me but when my D2 decided that i was being treated like a film star she thought maybe it was ok after all!I think that 10 days of sleeping loads and also getting plenty of sunshine probably did me more good than the chemo ever could. I've got blood tests later this week and see the onc on the 4th so fingers crossed he agrees
Apple, Hope you like my new avatar - i'm wearing the new scarf that i ordered from ebay, the one that you recommended (on another thread i think)
I think it's lovely - i may have to order moreHope everyone is doing ok and managing to stay upright!
mxx
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Hi everyone
can anyone advise dry mouth? No rads yet! Brain mets and on dex at present! Cause or treatment 0 -
Treatment, I think, dex does that to me- got it now
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Yay Tillycat.. the scarf is perfect. I get so many compliments on mine (i have more than several). women with hair want to get them.. how fair is that?
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our avatars are all messed up.. not showing up with the right posts... at least on my computer.
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Love the new scarves! I don't know how to tie them. I love the way you both have tied yours. Can you give some instruction?
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Avatars are all messed up on my computer too!!
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Yes beautiful scarves! I missed the post though, where do you get? Particular style?
Thanks ladies!
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this is an example of a scarf similar to one i bought. tho mine only cost 3.99. about 72" X 36"
I folded it in half and then into a triangl. i wrapped it around the front of my face covering it and gathered the sides into my hands. i then tied in back of my head.. and then took the ends and tied them on top of my hand. ... pushing the rest of it on top of my head. it takes a little practice but they look great and stay put. there are many scarves available.. you just have to move on thru the list. I like the silk/cotton ones and the cotton ones.
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Hey all. Was in emergency room last night bc my leg pain so bad and kept yakking up the pain meds. Now double fentanyl patch and taking liquid morphine, and Ativan for nausea. Already threw up 4 times today. plus this weird hard lump in my rt breast is painful and looks a little gray? My onc has been on vaca. And had spine MRI weeks ago along a all other scans and there is definitely cancer in spne but hopefully they had treated that w the radiation. But i didn't have these symptoms before rads! My rad onc said it was from the wbr, but doesn't sound like a you have had this....
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Oh Spark, I hate it when things really bother you and they dont have an answer. I guess now we may have complications on our side effects! I hope its nothing new and serious.
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