Brain Mets Sisters
Comments
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o jenn.. I am so sorry you are having so much trouble.. best of luck... i absolutely abhor vomiting.. that;s the worst thing in the world. ( i am becoming a bit incoherent... i really have to remember to talk slowly.. sometimes gibberish is the only name for the language i speak. I so wish you better health. i guess that is the way to say it.
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Ditto on the vomiting....and nausea in general....nothing worse. I gauge everything by whether it nauseates me or not. No matter what side effects I may have...they pale in comparison to nausea any day. Mid March, Jen? Hope you remain episode free for many many months to come. I really feel for your suffering. Hope you start having more better days.
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Gals, thanks for the input on gamma knife. Doesn't sound too bad in the scheme of things, I'm ready.
(((jenn3))) good luck with your appt tomorrow. I'll be thinking of you.
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Ditto nausea - I have almost a phobia about vomiting and will do anything to avoid it even though it's probably much better to let it out...
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Jenn, the nausea is the worst!!!! I can take being tired. I have been tired. Nausea? No thank you. It ruins everything. This will get better. I promise. Hugs to you and everyone else.
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Hi All,
It has been 2 months now since my gamma knife. Had 7 legions zapped. I found it a very doable procedure although the frame fitting was a bit of a pain.
It has been 2 months now since the procedure and I am still on the dex. I tried to wean down but the focal seizures came back so I am now taking 2mg a day again. Still getting the odd focal seixure so think there may be lots of swelling. Anyone else have this trouble? I am getting scanned on 3 May.
Lassman
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so what is a focal seizure.. what does it feel like.?. i am obsessing over what is the difference between radiation SEs and brain mets. (i really have such minor things that I notice thankfully.. little zap sounds that bounce from ear to ear. occasional dizziness or unbalance. I suppose I am lucky.
This is the first time since 2008 that I've felt a real sense of urgency about completing tasks before i join the choir in the sky. My property needs total landscaping. it was an old farm, cut up and made into 4 adjoining large propeties. It sat empty for 8 years before we bought it. .. it's right in the middle of the city. We found photos from the 70s of the mother happily planting tulip bulbs.. a photo of the 400 of those, 2 of which survived. I imagine lilacs and flowering perennials weren't in the budget.. i planted a lot last year, am planting a lot this year. I want to turn my kids into perfect indepent beings who won't suffer too much when i get on my flight. I want to complete 5 to 10 paintings.. (I've had the ideas for years).. I am becoming so OCD about how i want things to be clean.. and there is only so much time. It really pisses me off that now that I have the time to personally productive.................
POOF!
o well.. as I've mentioned - I've had the most fortunate of lives.
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@Apple I too feel I have had a rather peachy life...although outsiders might not see it that way. I also have been fortunate to have had minimal side effects from cancer or chemo allowing me to remain mostly in denial much of the time. It's only occasionally...like when I have a scan like recently showing further spread and have to switch to a different chemo....that it hits me...Wow this is real!!! And then I start worrying about what I need to accomplish first...for me it's a book of short stories.
I appreciate all of you. In fact when I have to face something potentially painful lately I bring you all with me..in my mind I scroll through avatars of Apples, Cool Breezes, Bouncing Betties, K Los...etc ...thinking of your struggles, your families, and the few things I know of your ordinary lives....and it comforts me.
I am waiting for the picture of your flowers, Apple...can't wait to see them!
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So we went to my Dr for the results of my body (not brain yet) scan. I told my Dr I did NOT want to know the bad stuff. Somehow, I know it wasn't good. Because my Dr knows that I am an Ostrich, head in the ground, ass in the air, kinda gal, she let me lead the way. Tell me what to do, and when. The bad news is of no value to me. I knew the day I was dianosed with this creepy HER2, my days were numbered. I think being given my notice was plenty. It is awesome having my husband and DR on the same page as me. I want to lve as well and normal as I can until I can. My frineds and family support is enough for 10 people doing what I am doing. My life long girlfriend, started a web site and I have over 40 people bringing us diinner every night thru May. The websie only allows 2 months of signing up. My other girlfriend is visiting till Friday, from Oregon. My husband keeps our house running like a well oiled machine. He does everything so well and keeps me laughing and so madly in love, it makes me cry. Today is so peaceful. Life is beautiful. Hugs. Oh, new chemo. I for get the name, don't care, and very few side effects. I asked my Dr if I died if she would be generous with the drugs, She said "absolutely". I love her!! Hugs to all.
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Oh BTW. I told my Dr to put out the effig fires. She said that is the name of the game. She wants me as close to my fighting self. She knew me when...
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Yikes...what is this frame? It does not sound fun! Can someone explain?
Amy
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yeah.. my onc. told me her+ was compatible with brain mets early on.. i think it rather exotic. who wants liver mets anyway. you turn like green.
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Apple,
A focal seizure can be different for everyone. It depends where your tumours are. Basically you are fully aware when you have one. It can range from sudden numbness and tingling in the arms or legs, dizziness, deafness and difficulty speaking - to name a few. These symptoms only last for a few minutes, usually one or two, and then you are back to normal. They are not long lasting and this distinguishes them from SE's. For me I get a metallic whine in my right ear, followed by a loud clacking noise which makes me deaf. This is followed by tingling in my right arm and right side of my head. It stops as suddenly as it begins.
Mezmerz - The "frame" is used during treatment with Gamma knife. You are injected with lidocaine at four sites on the head and they literally screw a metal frame to your head. I asked if it would hurt and consultant said "yes". Oh well, I did ask! Does not last for long though and the rest of the procedure is painless. I looked like frankenstein....
Lassman
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Everyone keeps asking me if I've lost any hair? No, but if I did...it wouldn't be the first time.....just had to get that off my chest!
Thanks for the welcome Apple! Thought I was finished with this! But of well, if a Fight is what Cancer wants, than a Fight Cancer will get!
Glad to be a part of Brainacs......well.... not glad but you know......
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Good news! My Brain and Spine MRI were clear! I still have a huge headache, tho. Thanks for all the advice!
Amy
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AMY! party on.....! nothing to increase headache though..... What are you taking for it? I very rarely talk about alternative healing, but I do believe in bio-feedback and can sometimes meditate or relax out of a headache.
Great news!
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aaaaaaaah
my friends
what would i do without you. ?
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they have these pain meds Mzmerz - i just take a bit and am very rarely in 'pain' - a low and constant rate of hydrocodone.
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great news Amy!
my update: finished 25/25 wbr yesterday. feel like i should celebrate, but am just too tired. exhausted. ridiculously so. my girlfriend took me to lunch and all i wanted to do was lie down. so sweet of her, though. friends are marvelous things. tapering off the decadron thankfully. would love to get back to "normal"...herceptin again on monday, and then we'll see - i think he said we're going to start tykerb and xeloda. just wish there was a way to know whether the wbr worked/made a difference. here we go!
apple, you've inspired me to plant some seeds with the girls - we've planted some zucchini, peppers and tomatoes. if i can keep the dogs from digging, we may have some fresh veggies!
hugs to all of you.
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Congratulations, Mauimom on your end of WBR! Hope you get your energy back and can really celebrate. Just spent a year on xeloda...and the past couple months tykerb with it...you get to grow hair
. Two weeks on and a week off didn't work for me....week on and week off was better...so don't be discouraged if you don't tolerate it well initially...but here's hoping you do! I had good tumor shrinkage on it too...and I've heard several people say that.0 -
Brain mets and now a double mastectomy? Hi ladies I hope I am in the right spot. My sister's cancer spread to her brain a couple weeks ago, multiple lesions, too many to count. She has finished whole brain radiation. The docs are finding quite a bit of new cancer growths in her breast so they are going to do a double masectomy/reconstrucion in about a month.... Has anyone had any experience with this particular fight? What kind of toll it may take on her? I know she really wants the double mast. so I am not going to question wether or not it is a good idea. I want to be supportive and prepared for her recovery time...
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Goldengirl12 I've gotten a double whammy or two and am obviously still here. I've continued to work and be productive. .. the first month of a double whammy is kind of hard.. doable tho.. the month after radiation is hard the first couple weeks - lots of little issues and I needed a lot of time to rest... she'll have a bit of time to recover for the surgery. which ( in my experience will be easier to recover from).
i'm sure she'll appreciate all the help she can get. WBR really is totally exhausting... . housecleaning totally wore me out. I was shopping the day after my mastectomy ( just one side) a double one has to be particularly hard the first week. I can only imagine. the thing about cancer treatments is that they often do work.
best of luck to her and you also.. my hopes and prayers are with you.
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To golden.....
I'm hearing things. Neurosurgeon said, "If the chemo gets the body cancer under control, the brain Mets will stop by occurring". So that means treat the original tumors right? But when I asked if my pectoral area tumor/ nodes should be irradiated or removed, they said "there's research being done on that...."
I would be relieved to have the " source" removed.0 -
I don't think I would want to waste all that time being 'recovering'. Those are big invasive surgeries. But, that's just me. I want to live forever, not going to happen, but I want to feel the best I can, while I live.
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Sorry if that sounded snottie. I just feel that strongly about not feeling sick.
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So, my really good girlfriend, from Oregon, just left after a 3 day visit. We went and got pedicures, had lunch with 6 girlfriends, and spent a night at the coast house. Super fun, and more moving around for me than I have done in 3 weeks. My very best, life long girlfriend has set a website to where I have over 40 girlfriends and sisters bringing us dinner ever night. I love seeing someone new, that I love, every night. So does my family. We don't have to think about dinner until June. So sweet. Lucky!! Hugs.
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Sorry. I repeat myself these days!!
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Sorry. I repeat myself these days!! tee hee
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Ha! That gave me a laugh, Jodi!
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heh.
i am smart enough to notice my brain is a lot slower. my short term memory is egads.. where is it? i go to get a shovel and lose it on the way to where I am going.. it drives me bats.
it drives me bats
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