Brain Mets Sisters
Comments
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My voice has definitely been affected - unpredictable hoarseness or voice goes missing in the middle of a sentence, low level cough for months (not painful or productive, just there 5 or so times a day).
Would like to wish everyone here a nice Easter weekend, whether you are going away, having guests or just staying quiet and enjoying the spring weather - hope you all feel well enough to make the most of it.
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No voice issues here, but at the moment (just 2.5 weeks since rads) the area behind my ears is ichy and it burns when I scratch it. I figure it is from the radiation, but it seems strange for it to show up now. My forehead is healing up finally and now we start with the ears?
Otherwise I'm hanging in, the fatigue is funny. I can do what ever I put my mind to do, but if I stop I'm a goner, I can sit on the couch and lose hours to crappy tv if I'm not careful.
Hope everyone is feeling as good as possible! It is a gorgeous day here and I'm headed out to do a little bit of yard work (who knows how long before I'm back on the couch
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the place being my ears are scratchy.. my ear canals are runny.. my hearing is muffled.. the rad doc said this should last about 6 weeks. my forehead and the back bottom of my head are 'burned' but the redness is fading and peeling.
been working right along.. my friend came over.. paid her to help me clean (i really am not a good housekeeper and she certainly is.. i am in avid garden mode on our rather new property.. sprucing it up.
cheers - time for a nap
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Hi everyone. Taking my family to the airport at around noon. SFO. My girlfriend is driving. Actuslly shaved my legs today while sitting on the shower floor. Tried yesterday I dropped the razor in 3 pieces. I worked for about 20 minutes with the water pouring on me, trying to put the darn thing back together. Finally gave up and left the stupid thing on the floor. I almost called someone to help me, but I would rather live with my ape legs. Today was another day!! My head is like a scratching post. My hubby says the back of my head looks sunburned. It's always something!! Wishing you a fabulous spring day. Hugs.
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Ugh! Warning - I'm ranting. I had a frustrating day. I finally got in to see an ENT about the fact that I'm deaf in my left ear and well she told me I'm deaf in my left ear and she isn't sure why. It is nerve damage either from radiation or cancer and I need a hearing aid. So I go across the street to book an appointment to get evaluated for a hearing aid, the first appointment...the end of June! Ugh. This is after waiting 5 weeks to get an appointment to see the ENT. I am now thinking it was a mistake to go to the big teaching hospital where I have a GREAT oncologist. I think I'll call around and see if I can get in some place else sooner.
My next post won't be so cranky, promise!
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That did not sound like ranting!! Just normal frustration. Are you going to Stanford or UCSF? I think we're all but neighbors!! So far my hearing has not benn affected. They itch like crazy like the rest of my head. Like you, I had no burning on my head until now. In fact, my hair should be growing back, no chem in over 6 weeks, but no growth at all. Happy gardening and hugs to you.
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Hey, Braniacs,
Re radiation effects delay, i just got a burn on my back and it has been a month at least since that tx ended. They say the benefits continue to kick in just as the Se's do, so that's good.
I have stuffy ears, too, Apple. I'm so sorry rohm ,,,, the ENT was not very scientific for you, so I'm hoping this might be a reversible deal? Since he knows so little about it, how can he know it's permanent? Did you ask the rads Onc?
Jodi, you got the dropsy's. I always attribute mine to chemo past and present... does your Onc ever talk about Radiation recall or chemo recall? One or the other triggers a return of some SE? Mine insists my red neck is radiation recall.... I say its sun damage and want to have it lasar'd when i get the money. ha ha Money.
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Hi K Lo. I have a cat scan Friday morning. the scanxiety is there, but I am changing it up. I don't want any bad news, so I am telling my onc on Monday to just tell me where to be and what to do. I already have my ears plugged.
Everything about my physical self has gone wacky in less than 2 months. Like I said, my right side is weak and uncoordinated. I feel like I drag my foot. My speech is jacked too. It's almost like I have had a stroke. My mind is sharp, but this body is messed up. You guys don't know me, but I have always been the energizer bunny. I am so sad and frustrated by all of this. I feel like a big baby but this is effed sometimes.. Hey, I did shave this morning!!! I didn't drop anything!! It only took me an hour, doing everything left handed!!! Hugs!! 0 -
I'm reading these post and am glad to know I'm not the only one with radiation/steriod issues. Not happy that you have problems of course. My voice will just disappear and the person or people I'm talking to can't hear me. I can't hear to say the least. At times I find the television up to 25 -30 in volume drowing out anyone near me. And.........by the end of the day I feel like my head is underwater constantly. My skin on my abdomen and bacj is so dry and itches constantly. Especially at night so I keep a cheap back scratcher close by. Last but not least I am so bloated I don't recognize myself in the mirror at times and have had to buy new clothes that fit around my budda belly and neck. My legs are weak and I to get headaches since radiation, prior to that I hadn't really had headaches in years (since my hysterectomy in early 2000). But.....I did wake up this morning feeling great luckily because one of my closest friends and I had plans for a mani-pedi at a high end salon using gift certificates we had for our bdays which are only a few days apart. What a treat! And, on Monday DH and I went out to a high-end steak house using a gift certificate and I'll have to say it was one of the best steaks I've ever had. It was hard to stop eating and save room for dessert.
. I am so appreciative of those that gave us the gift certificates otherwise I wouldn't have experienced the steakhouse. Now if those things could be our problems.Jenn
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thank you thank you for the rants.. at least i know i am not alone. i have found that if i press the fronts and side of my cheeks bones.. just out from the ear canal, rhythmically and then pull down.. kind of like lymphatic massage.. my ears will exude a bit of fluid which i then carefull absorb with a Q tip or two. my ears have always been dry with very little waxiness but they are exuding a lot now... i have to carefully get it out. i pull the outer ear to straighten the canal and carefully insert a Q tip i just stick it in and let it stick out for a few minutes. . and I can hear better quite a bit better - i do this about 4 times a day.. it really helps in letting the sound come in.
Gals born in the 50s or earlier? remember Doctor Tom Dooley? We have a book. things could be worse...... words in italics are not for the squeamish.
"Dooley wrote about his experiences. He proved to be a gifted writer. His descriptions were not the dry and straightforward sort typically found in military situation reports; rather, they were passionate and eloquent. Navy commanders distributed them widely around the fleet in order to boost morale. William Lederer, public information officer for the commander-in-chief of the Pacific Fleet, saw the potential of making Dooley's observations available to a wider audience. (Lederer later achieved fame as co-author of The Ugly American). Lederer urged Dooley to keep a journal, helped him turn it into a manuscript, and introduced Dooley to senior editors at the Reader's Digest who helped get his story published. Ultimately Deliver Us from Evil became a best seller.
Dooley's accounts of the plight of the Vietnamese refugees were frequently coupled with religious references. For the crime of listening to the Lord's Prayer, the Viet Minh "often would tear an ear partially off with a pincer like a pair of pliers and leave the ear dangling." For Vietnamese Catholics who experienced this torture only from the other ear would they "ever hear words, evil or holy." [6] A Vietnamese named Cham was burned alive by the Communists because he was the head of a Christian youth movement.[7] The Viet Minh held a class for children in a village courtyard. Seven children were ordered to sit on the ground, hands tied behind their backs. The students had been reading the catechism. As punishment, Viet Minh guards grasped the head of each child and, with all their strength, rammed chopsticks into both ears. The teacher of these students had his tongue pulled out with pliers, then cut off at the tip with a bayonet."
I guess I better book an appointment with ENT. I also need glasses, but I want to get them at the perfect time.. not when my vision is at a weird stage. it is particularly hard for me to hear the human voice talking.. like my husband and kids. I will be really mad if i totally lose my hearing in an ear, (as a working musician).i found a post in the alternative forum ( would a ketone diet kill cancer) that i found interesting and then this wiki entry... i do not believe in offering advice and always do it.... i am just going to really try and get my protein up.
http://en.wikipedia.org/wiki/Ketogenic_diet
interesting in that i have brain mets and a ketogenic diet has been found to be effective in children in reducing seizure activity.. my worst fear. i had a massive one about this time last year and it knocked me down for about 3 months.. totally on the sofa. At the moment.. because of chemo it is particularly hard for me to eat protein - it is hard to eat anything
peace and love, apple - ..... Mary Magdalen
Diagnosis: 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+0 -
Really quick, does anyone else feel like they have too much saliva? I'm not sure if I am not swallowing often enough, or I now have an exorbitant amount of spit I am creating. It's quite sicko. Hugs.
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I have heard of it on another forum.. i have the opposite problem.. DRY MOUTH. too bad we can't trade by half.
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Hey, Jodi, you must be well hydrated at least. I dont drink enough and get very dry with activity.
But call it in if it seems truly abnormal......
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Hey gals,
New to the brain mets club as of last week. I have one small lesion and am scheduled for gamma knife on 4/24, just one single zap according to the neurosurgeon. Any advice or words of wisdom? I'm feeling pretty good about it based on what I've read. Aside from the indignity of the frame on your head and being bolted to the table, it doesn't sound too bad.0 -
i did 14.. have a host of easy to tolerate issues. good luck with the gamma knife and sorry you are here, but kind of glad because i like you
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Hey Nancy. Boy, the boobs like to send lesions to the brain don't they? I've had three gamma frames, one was a no-go for tx but all in all, I've had 11 lesions zapped. The frame is.lightweight and I felt nothing after the initial procedure. I am going to ask them to.let the versed kick in fully before they start.
As far as being on the table, I was very comfortable. Some versed still on board, I guess.
They gave me decadron IV before each procedure and a quick weaning dosage for two days after. During those two.days i ate like a farmhand.
Let methe know or PM.me.if you have other Q's.0 -
Thanks, Apple and Kathy.
Eating like a farmhand, eh? That made me laugh.
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i really wish i could eat like a farmhand.. my appetite is absolutely nothing and i have so much gardening to do.. my oldest son is like the best hardworking person ever.. he'll do all the heavy stuff, and i can say i can actually pay him~! first time since marriage. I earned a bit here and there over the years but really not enough to accumulate money to give to my children or friends for helping out. On paper i am worth a lot because i am my husband's office.. it would cost such and such to replace me..
Son # 1 is the only person worth paying in my fam.. He has totally inherited me and DH's absurdly productive work ethis. the younger two are like royalty or something. what's up with that? my daughter will work hard and rather secretly but she is almost 13 and we are having puberty issues. i really wish i could skip all that self actualization she is going thru.. but o well.
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Bolted to the table? Didn't know I was bolted to the table. The versed put me to sleep! Hope it does the same for you, Nancy. And so sorry u have to do it.
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i kind of liked the being bolted feeling.. i thought of
well, never mind
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Second time I've heard (or technically 'seen') you say that about your daughter, Apple and ill admit the first time i was actually relieved! It seems you paint such an idyllic picture of family life i guess i want you to at least have some puberty issues. I mean it's only fair!
. My daughter is twenty one and still has a lot of the 'B' in her depending on the day...she's a regular Jekyll and Hyde. I'm starting to really envy people with such supportive spouses and children. Actually I do have lots of support...just that most are not related to me!
I have to chime in on the super adorable children, Mauimom...and they look so happy! I love to see pictures.0 -
Do you feel that way about all tables, Apple...?!
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I have two girls, they are now 20 & 28, but believe me all teenage girls give parents a run for their money. When they hit their teens they are taken away and replaced by some strange alien form that appears to be our sweet children. Ya' know the ones that run to the door when you come in, cuddle up next you and actually say I Love You. Still listen and don't give you the eye roll that they started practicing a year earlier and aren't afraid to be seen with you. We can't seem to stop the invasion so we can only hope during the next 3 - 4 years the invasion is lessened by the morals and lessons we gave them. They do come back and when they do it's beautiful. As I was told one, it's their job to push our buttons and test us to see how far we'll let them go and it's our job to hold the fort. Until then I'm sending you a big (((Hug))) Jenn
Edited for typo
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just trying to be funny banjo..
when i was pregnant with my first i really wanted a gender surprise.. but the silly nurse left my folder open with BOY written on one of the later entries. I went ahead and found out the sex of my next two. When the nurse called with the results of the 3rd and said it was a girl, i actually burst into tears.... i just knew the DD's puberty was coming..
She's fine but she really is bossy and totally whack on her menstrual days. Usually she's a lovely girl with much happiness. she recently told my husband he was too smelly to come in the house, that he should come in his own door and go straight to the bathroom and shower immediately .. and she always yells at her brothers to keep their rooms and the bathroom clean... just as well i guess, since my voice is too low. I remember absolutely despising my mom in my early teens and my mom was adorable. i totally sense she is not lovin me at the moment.. rolley eyes, morning orders and shut doors.. Sooooo i do try to avoid the mom thing ( i am kind of OCD) , ... kind of hard when you know you will die and only have so much time to teach them well the lessons of life. i just hope i can contribute to keeping her inside as pretty as her outside. there is a time when being pretty becomes detrimental.
here she is doing the snookie (thankfully she is a tomboy dresser usually)
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Wow! She is a doll, Apple. My daughter is pretty too but when she used to get incredibly bitchy with her ex bf even her brothers didnt understand how he could tolerate her saying " I know she's pretty but she's not that pretty!"
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Was trying to copy some pics to here but can't figure out the technology...oh well...wasting to much time on it...I need to do some normal stuff...like vacuum!
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you have to post them to a site like photobucket, then paste the image URL (the address) into the box that pops up when you click on the tree. you then have to simply click in the size box.. it will automatically fill in ... then hit insert.
if you on facebook.. you can take any full size picture and copy it there and then paste it here in the reply box.. super easy.
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Ooops! Didn't exacty work! I think the ipad Is limited...or more to the point..the operator is! Will try on the desktop
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Yes being very beautiful was a curse for me, so I can relate. Joking!
Apple is there a fantasy linked to your idea of being bolted to a table? Ohhhh wink wink say no more I get it.
My experience with ketosis and diets is with the Atkins diet and optifast. One loses weight but feels satisfied with those. So tread carefully, our little Apple.
Jeez almost passed out several times today, you know, upon standing up. More severe than usual. But I am done pursuing medical mysteries! Its probably a normal thing, eat salt etc.0
