Brain Mets Sisters
Comments
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I had radiation (whole brain) March 1st thru the 14th. Every one of the symptoms or side effects, I had/have. It gets better, I promise. One day at a time. Don't live it twice if it's gonna be bad!! Hugs.
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Formygirls,
Of course, I don't know the answer . But:
1. You have two docs saying don't worry
2. Neurosurgery never PRE-medicated me with decadron
3. They always used very small doses and weaned me off quickly.
Neurosurgery told me to call if I had symptoms and they would give me more.
It may be related to the lack of inflammation they see on the MRI?
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KLO, tomorrow, I'm going to have them call in a neuro someone. You have got me going! Thanks. I will not give up my quality of life like this and put up with it.
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<<< Dusts hands together and feels very satisfied.
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afternoon/evening/morning where every you all are..x
i had a rather unpositive convo with my breast nurse today she is there to help support me right?...well i was feeling very up today after lots of positive things i had read in here and on my facebook from friends..but she brought me down..she didnt seem to think/or sound very enthusiastic when i was telling her about people still going a year down the road with more than i have got going on im my lil brain...i found out im only having partial rads not full like alot of you mention..
i know im gonna go eventually but a little positivity woulda gone far today...if ya know what i mean..
can i ask you ladies in here how long you have all had your secondary brain cancer...and is secondary worse than primary which was another thing she seemed to present....
sorry if all my questions are stupid but ....i am..lol
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lassman..so nice to hear from u..:) will be thinking of u, wishing u all the luck and sending u loads of positive vibes..xx
tracey, i am sorry to hear about your experience, we had a similar experience with our gp for my mum, dont let them let u down...keep thinking positive. Good to know about your treatment plan, try and concentrate on your treatment and get all the info u need from your team, write your questions and keep the important tel nos with u for any info u might need later on..i hope u dont suffer from too many side effects and sail through your treatment soon..
take care, love n hugs xx
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thankyou bestfriend05
anither thick bit...wots a tel nos?
did you suffer with side effects? im having partial rads not fall brain..i think i said this before ..im like a parrot..xx
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hi again tracey, my mum had wbr in dec and had side effects mainly fatigue, lack of appetite, hair loss ..but what really helped was to have the tel nos of radiation nurses near by..we called them about twice in three month span just to discuss what side effects mum was having and what should be done to help ease them etc..it just helped to talk a professional when needed ....
i am sure u will do fine, it sounds scarier than it is...the actual process of radiation is really very quick as my mum told me..
i am not sure if partial radiation makes u as tired as whole brain radiation..
i am sure one of the members here had partial rads not so long ago..maybe she will read one of your posts and let u know her experience..
i hope u r not over worried and getting good nights sleep...although i know how to difficult it is to feel normal in such a situation..i do hope everything falls in to place really soon for u..
much love xx
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that was lovely thank you....and im trying to sleep and keep my spirits up for my kids sake ,,but if anyone asks me how i am i break down i am sticking to typing and texting at the mo...just have this niggle in my head that i wont be hear for long and i know i shouldnt think that way.. i was so up with the chemo n rads n op last time..this has done me like a kipper..:(
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i know what u mean when ppl ask u , although they mean good u r not always in the right frame of mind to answer them or even face those questions over and over again..
love n hugs to your kids tracey ..xx
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where is your treatment tracey, i notice u r in uk..i am in hampshire although mum is in canada xx
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im actually in northern ireland...but am a essex girl minus a boob and a orange tan..lol
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hehe..like your sense your humour..ahh..never been to northern ireland...maybe some day xx
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its lovely ..all green n wet n sheep n cows ..but i hear its not as wet as over in uk at the mo..
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hmm yeah we had the indian summer in march and back to british weather again this month, minus the sheeps and the cows though hehe..! a little bit crazy at the mo..xx
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Dear Tracey,
I have had ONE person bum me out, while the others on my team are encouraging. Hang in there.
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I love that avatar, Tracy! Welcome as we all slog through best we can.
Paula
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Hi Tracy. I think everything you're feeling is normal. New stuff is not very welcome right now. I always think, 'what's next?' Shingles? There were days after radiation, I thought about me dying way too much. It was like I couldn't deal with my new normal. My oncologist is a lovely woman, who totally gets me and my weirdness. She is the one who pointed out that I was suffering some depression. I was immediately defensive. I have never had a depressing day in 51 years. Needless to say, she was right and I had to look at all this differently. It took me about an hour to switch it up. I always say, I refuse to live something I have no control of badly, twice. One day at a time. Enjoy your family and friends. It's good advice for everyone. Not just for us brainiacs. BTW My hubby's family are from Northern Ireland. Delightful people. I love them. Hugs Jodi
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Also, my side effects were, extreme fatigue, hunger ( steroids) to where your arm wouldn't have been safe, and I have always been a skinny minnie. I cried a hundred times a day, for no apparent reason, I repeated myself, I repeated myself
. I puked till hell wouldn't have me. I lost my awesome appetitie. My right hand is jacked. Neuropathy. I wake up, due to nightmares about my hairy armpits, I am unable to shave. My right leg drags behind me. If I walk too far, my knee gives out. Yes. My husband and kids make fun of me. All in good fun. We have sicko senses of humor. I start physical therapy on Thursday. My speech is all messed up too. Better than it was..but it's still slurred. It sounds like I am drunk even at 8 o'clock in the morning. I didn't talk on the phone for that time. Everyone knew they had to text or email if they wanted to converse. I have to hang on to someone or something when I walk any distance or in a crowd. Humbling. I don't take anything other than the occasional advil for headaches. I loved red wine more than kittens before all this. Now, I can't even stand the thought of it. I would love the buzz, but it would never go down!! So sad!!! 
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Hi, Tracy108,
We live in Germany but used to live in Chelmsford (Mum and brother still there) Billericay and Colchester (Nayland) before moving abroad. Welcome! Hope things go well for you.
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once again thank you evryone you are really helping me...i asked for positve stories yesterday from people i know on fb and got a lot of good ones..its nice to have them to go by...but one...omg....told me...her friend found out she had it and died in 5 days of it....i really need them kinda stories...not..
k-lo thank you..x
banjo thank you i have friends in billericay in the break-egg-hill area.
jodi where in northern ireland is your hubby's family from roughly? your sense of humour sounds much like mine ..it was how i got through the first stint of this ~@**@#..and probably how i will deal with this next stage once i have stopped trying to solve the hose pipe ban with tears..kids just say to me 'oh ere we go again'..lol
i miss me glass of wine and wonder if i can treat meself to one ot the week end what do you reckon?
up to belfast tomorra to get me planning done so will know more after that..:$
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tracy - i think most of us hate the dexa meth stuff. hopefully you'll be able to weaned off of it soon. it's very helpful.. but boy does it make you feel awful. very tired, but totally wired. Some people take a sleep aid.(i think when i finally figured out that is what i needed i took 1/2 an ativan.. those make you feel weird too, but at least one can sleep.
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thanks apple..i have used 1/2 a pill to help and it has help knock me off..x
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Good morning Tracy. A glass of wine never hurt anyone. What? Is it going to give us cancer? Mark (hubby) is from Belfast. Still has first cousins over your way. Fabulous people. We're quite the combo. I am Portuguese and he is pink!! Apple is so right. The steroids have a big job, but they are a big problem too. I was thrilled to be off of them. It sucks when you're in the thick of it, but it gets better. I didn't think it would, but other than my crazy side effects, I feel good. Slower than...... but good. I wish you the best. Do you mind if I ask how old you are? I just turned 51. This seems to be a relatively young women's illness. WTH? Hugs. Jodi
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Hey--just thought I'd chime in here. I had partial rads...about a year and 1/2 ago. My problem was just one lesion and it's in my cerebellum. We saw no need to radiate my whole brain under those conditions. I had two surgeries...after the first and the subsequent radiation I became fully functional again pretty quickly. After the second has been harder, but that one lesion is a stubborn one. I probably won't get full function of my dominant hand, but I'm working on getting as much as possible. And I HAD hair problems...after not trusting my dominant hand OR my other hand to shave...but I was re-reminded of depilatories...and no more hairy me!
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OMG! Thank you Hopbird. The depilatories are perfect. I have used them all my grown up years, but never under my arms. I am using them there today!!!! Thank you!! Hugs. Jodi
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jodi..hi again....im 42 in may... how long have you had this 'thing' in ya head if i can ask?
hi hopbird your words have been encouraging thank you..i have 1 lil blip at the back of my head at the base..and as far as i know having partial rads...no mention of surgery..:(...wot side effects can i expect to get with partial rads? have you had any sz's? and whats with the hand is this part of it? sorry for all the questions but i am trying to gather as much info as i can clue my kids into what may be coming home with there mum from the hospital...going to get my planning tomorra and any useful questions to ask would help also..i know not to google and not to ask the how long question but i have so much fizzing round in my head i would just like a few tips.
.thank you ladies..
all the breast
tracy..xx
p.s ...is any back to driving and if so how long before you was able to?
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Tracy I've had gamma and linear accelerator. The LA may be what they mean by partial rads? They warned me about spotty hair loss bit cannot tell that from halaven thinning. So far as I know, there are no direct consequences in motor strength., speech, etc. Plenty of those issues from everything else plus meds I guess.
hope for the best .......prepare for, you know.
Most if my great fears have not come to life.0 -
I was diagnosed with Her II in December of 2010. It had already spread to my liver. Stage IV. Then in Nov it spread to my spleen. What the hell? Then in February this year, they found three spots on my big brain! There is a 1cm tumor on my brainstem as well as a spot on either side of my brain. The radiologist said there were probably more that were too small to see. Hence, Whole brain radiation. What a mess! And, you are all but a baby to me. 42? I thought I was young. My oncologist told me most people live a couple years from this point. I told her I was hoping for 5 or 7 or 9 or 11..... We shall see. Maybe they will have some great medical break throughs? I figure if I am predicting what is to be, I am doing it the way I want it to be!! Hugs Jodi
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My issues were more related to my 2nd surgery, and the disease. For some reason it decided to affect my dominant hand...luck of the draw! I don't think I had any SEs that lasted from radiation-at least yet. Oh, and the limitation on driving was only a few days with my radiation...more like a month with surgery.
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