Brain Mets Sisters
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I am 51 years old. Do you mind if I ask how old everyone is? Does age factor into what each of us is willing to go thru as far as treatment?
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59 and a half.
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banjobanjo, the half helps. I like it cause you sound so immature!!!!
I kinda thought we were all pretty young, in the scheme of things.0 -
Hey all. I was diagnosed in June 2010 at age 38 with TNBC, stage III-C. and was told I was NED in July 2011. But now it is back with a vengeance in my lower back, my chest lymph nodes, and my brain. I just started whole brain radiation 2 days ago, 8 more treatments to go. They are doing radiation on my brain and my back. My Onc told me that after we finish the 10 days, I would need to take a break for my body to recover and then we would look at chemo options. She said she has to take a "lumbar puncture" to see if the cancer is in my fluid and if it is, then they would need to give me the chemo directly into the lumbar area. If not, she is considering a single agent chemo, called xeloda. At this point, she said that I have a "few months" of survival, although she "hopes" I prove her wrong. Every day, I have headaches, some backaches, and my chin is numb. They have me on steroids to reduce swelling, but it seriously makes me feel like shit, my stomach hurts, can't sleep at night. I also just feel no tast in my mouth, feel constantly queasy, and out of my skin. I don't know if its from the cancer or the steroids or the radiation.
I am terrified. Any advice? Anything? When will these headaches and numb chin go away? Is there any point in moving forward with any additional treatment?
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they always tell you the worst.. seriously. hopefully, things will not be bad for you. radiation is kind of hard.
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Hey Spark, hang in there. That radiation is the worst!!! It knocked me sideways for about 4 months. The steroids are brutal, and I bitched the entire time I took them, but someone very wisely set me straight. You do not want to seizure. The steroids help with a lot of side effects, but come with their own. Try and treat each crummy thing as they come. Do not think you are unusual. This is a nightmare of a treatment, BUT you will get better. Honest. I never thought I would feel any better. I did and I do. As far as the rest, take each day as it comes. Don't live it bad twice. Wait and see what happens. You are here today. Who knows what tomorrow will bring? I am thinking the best thoughts for you. This sucks. Nothing but anxiety. Dammit. Hey, I am not too far from San Francisco. Just a bit north! Hugs. Jodi
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Advil controls my headaches. Always. They are also an anti inflammatory. Ask your doctor.
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50 and 1/2! Diagnosed at 49 1/2!
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We're all too young!
Dx 47, brain mets one week after 49th.0 -
59 and a half.
ok.. that did make me laugh. maybe it's kind of like being 39.
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I am 40. Have not slept for days. I took a margarita at 3 in the morning. Everything be damned.
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I was DX with brain mets at 34.
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I knew we were on the young side. Formygirls, Drink up!! We have to have our sleep. No adavan? sp. I hate being desperate. Hugs and I wish you sleep.
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2 glasses of champagne and an Ativan last night. Fuck it. Having a crap day today. Have put on 8lbs in 4 or 5 days and feel aching and so uncomfortable. Steroid retention or ascites? Guess I'll find out tomorrow along with the brain MRI definitive results. Already know one is bigger. Hoping for SRS so I can get off the stroids - they make me wired, don't care less what happens to me and generally evil. Usually I am a nice person. Think my family are at their wits end with me....
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There are no rules at this point. Other than not having a filter on my mouth, I don't care either. My sister thinks I should be on a mood elevator. Imagine. My appetite is back, and I think I have gained badly needed weight, although I don't relish the idea of packing it around. I hope nothing has grown back for you. The rest of this post radiation will go away. Between that and the side effects of those steroids....Oy. Take it easy, and your family will get over it. Hugs.
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Oh, for enquiring minds, it took me an hour to shave my legs. I was a little nervous about getting off the floor of the shower, once I got down, but I did it. I will not let anyone in the bathroom with me, so if they hear the water never stopping....
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Alesta.. you are probably just constipated.. drink some of that chinese tea that helps you lose weight it is just senna. (works a lot more reliably than smooth moves.. ... it gently enables things to work.
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Tiger blood, if you were diagnosed w brain mets at 34.. how old are you now? I guess I am just trying to think about what may happen. my family and friends keep wondering, and me... well, am feeling pretty hopeless at this point. just want to to feel normal.
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Spark. if you are open to it, you should try some pot. Edible or otherwise. It will take away that hopeless feeling. At least it did for me. I spent a lot of the bad time stoned. It made it bearable. I was living way too much in a future that I didn't even know. Try to stay in the moment. We all should. I work at it everyday. Your friends and family have their own deal. They're scared too. None of us know. Just this very moment. Feel better. Hugs Jodi
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My onc gave me Marinol which is marijuana . I have not taken it yet. Maybe I should? My prob is I cannot sleep. I take Ativan and ambien every night but still cannot sleep. Should I add wine? I have not al ohol since dx because of liver mets until the margarita last night. Onc gave Marinol as I am losing a lot of weight as I do not feel like eating anything.
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Marinol is ok, but not like the real thing. You would be surprised at how many people have it, and can get it. It has no side effects, besides being stoned. My only complaint with it, was it is a committment to being high for about 10 hours. It helped me sleep, my appetite was better, my mood was mellow and deep, and I laughed a lot. I have liver mets as well, but not bad enough to not have a drink now and then. I would be a big drinker if I could tolerate the taste and smell of alcohol. Be careful mixing the benzos and booze. That scares me too, but I get the desperation to sleep. Hugs.
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So, if we're still playing the age game, I was dx at 36, brain mets at 37...
School starts here in a couple of weeks so the girls will once more be occupied! Of course, I am no longer driving again so will have to rely on others for transportation Maybe that's a good enough reason to start making margaritas??
Love and aloha to you all.0 -
i need to find a connection.. i used to have one. in the eighties i smoked a tiny bit of pot daily then practiced the piano for HOURS! and hours.. i think an ounce lasted me about 3 years.. i am talking just a tiny bit.
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Apple, if we lived closer, but I am too chicken to mail any. My husband is a retired fire fighter, and you wouldn't believe how many firemen, cops, nurses, paramedics etc, are holding it for a friend. It really isn't that hard to find. I haven't used any in over a month, but when I needed it... I am also growing 2 plants. Thelma and Lousie are their names. Last year I only had one. Her name was Janet.
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cancer mom arrested mailing pot over state lines
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I was 33 when DX with stage 3 then progressed when I was 34. I am 35 right now and plan on being here until my 40's!
I admit I am a pot smoker now. It's really for appetite and plus I am such a nicer person when I smoke.0 -
You guys are killing me. Maybe in California it really is just an herb. It does grow right next to my basil and tomatoes. Tigerblood, it does make everyone nicer. I wish everyone would indulge over alcohol. The world would be a more mellow place. We wouldn't get shit done.. Really, we have to do what we have to do to get through this nonsense Potis a great plant. And I am sick of stuff made in a lab. Apple, you are right. Can you imagine them throwing the bald girl in a cell? Would they frisk me?
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I did the medical marijuana route my first round, and actually it didn't really make me feel any better, it made me feel weird and even more out of it. but am sure its an individual thing.
am just trying to find some words of encourgement or hope, i think.
now that the cancer is in there (brain), i mean, is it possible for them to get rid of it all or enough to me to feel "normal" or have some time of being cancer free or symptom free for a significant amount of time??
i mean, i know at this point for me I will die from cancer. bc its also in my bones and chest lymph nodes. but i just feel like shit. and this numb chin/face thing feels awful.
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Spark, you are right in the middle of the toughest part. Radiation! You are going to feel like hell for a bit, and after the rads do their thing, you will feel better. It took a while for me to feel even close to normal. The numbness might be a side effect from the rads or the brain mets or the steroids. Ask the radiologist. Try and take it easy, and not focus on the bad. You are living way too far in the future. And a bad one too. You are alive today, we'll have to see about tomorrow. I think all of us have cancer everywhere. I know I do. Breast, liver spleen and brain. It's a matter of putting out the fires, not curing us. I wish you felt better. One day at a time. It aint over till it is over. Let's live while we can. Who knows? Hugs. Jodi
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And Spark, there is always hope..I couldn't live without it. Even cancer free. I need hope.
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