Brain Mets Sisters
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Tracy - lapatinib is Tykerb which crosses the blood/brain barrier and can enter the brain to get to those cancer cells. The Herceptin molecules are too big to be able to cross the bb barrier and get to the cells in the brain. I am on BOTH Herceptin and Tykerb as maintenance schedule. (H every 21 days and T every day.)
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Hugs for Melissa, hope they find a doable treatment.
Sido - sorry you have to be here but there is much love and support here. I don't have any suggestions about meds for brain rads. I am luckythat I haven't had any problems at all, and I have just two more treatments to go.
For those of you with balance and fine motor skills issues, how soon before things improved? I miss my balance!!!
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Dear Apple,
So your check up showed..... New or unresolved spots? When do you start and do you have to stop current chemo?
My voice is so strong that I assume halaven. has the chest rumors in a holding cell with armed guards. Funny cause my people see the SE's of chemo and think deterioration.
For Xmas I want my big boob taken down to match the little boob. Onc says plastics wont do it so I don't make the appointment. Sometimes when I ask for any vanity solutions, I suspect they think I'm arranging decks chairs on Titanic. But jeez these deck chairs (frankenboobs) make up a big (C/D vs
part of my appearance. It's hard to give up the insurance-covered reconstruction that some of my friends continue to use for many years.
Yup,, I'm queen of DeNile with the best of them.0 -
scuttler thank you gor answering.....
do you get many side effects with T? i have only just started it...
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Tracy, I had a horrid time when I first started. Nausea and diarrhea was very bad. Learned a lot over the past two years. Absolutely NO leafy vegetables, especially lettuce! Careful with acidic and spicy foods. (such as orange juice, etc.)
Take the tablets on an empty stomach and rest for a few hours after taking them. The best time that worked for me is when I get up about two AM to use the rest room. I put the dosage out in a small cup and a glass of water next to them. I take them in the middle of the night, and go back to sleep for a few hours. It really made a HUGE difference for me (and for several others on this forum).
I would question your onc as to why stop the Herceptin. It is very doable to do both the Herceptin and the Tykerb. This is what the MDA onc's recommended for me.0 -
Hello all thank you for your inputs for re mum's second round of WBR and uncontrolled disease in the body, got a second opinion from my mum's gamma knife dr in winnipeg..he says chemo in body controls disease so we should wait before any treatment for brain..as the mets in brain are too small right now..
I am really keen for gamma knife anyways, which would make sense rather than let the mets grow and get out of control..
Trying to get the drs here in vancouver and winnipeg discuss mum's case..
Apple pls let us know how u get on with your second round of wbr, sorry its in a tuff spot..
Thank Klo too, I am hopeful that we can sort gamma knife out for mum too..
love to all and best of luck to all here...
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Apple - thinking of you and hoping the wbr works its magic. (((Hugs)))
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I had 1 round (16) of WBR back in aug 2011, been having all kinds of issues as of late - cant' stand and use a wheel chair -6 months, can't hear aqnd wear hearing aids which don't help much, red hot itchy toes oh and don't let me forget grandma pee pants!! wasn't sure if these were se or brain mets againfound out Mon tht the bain mets are back. I have been poisoning myself for 5 1/2 years so I told onc no more chemo, no radation and he gave me 2-6 months approximately. Kind of relieved actually but sad for everyone I have to leave behind; I guess I am just ready and they understand. When I had WBR I had all the typical se's ears clogged hair failing out wobbly, it lasted about 3 weeks and all got better then in the last 6 month boom all got way worse but i had a good year without too many commplaints.
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Kathy,
I'm so sorry you had to make this decision. (((HUGS)))
Cheryl
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Enjoy your time with your family.
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Kathy - so sorry that you have reached this point. Try to enjoy every day. (((Hugs)))
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sending love and blessings
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Sending my best to you, Kathy. It takes a strong person to decide when enough is enough. You have been through a hell of a lot. Sending you many gentle hugs. Bless you.
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Kathy, I hope I know, like you know, what I want at this point you've reached. Did you already get acquainted with a hospice?
Hope they are kind and thorough and work with your family. And I hope you feel better off treatment.
Love and peace
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Question for you Brainiacs....I have had a burning sensation in my brain, in the same spot for about 3 weeks now. Top of my head, right side. Should I be concerned? I'm also wheezy and it kind of hurts to breathe, so of course, I feel like I am going to implode any minute. You can sure talk yourself into something dire with this blasted disease! Any advice is appreciated.
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hey, Mz,
I had a chest full of nodules but when I complained, my MO said "you wont feel these they're too small"
I had 9 brain lesions. I would feel alll kinds of headaches and such. Neurosurgeon said, "its not from these lesions, they're too small"
My pains have been all the hell over. The only symptom that lead to a discovery was back pain and I'm glad I pushed that issue : got wonderful improvement with treatment. Much better QOL.
So, I believe I will report all pains on the chance we can catch something early.
Re breathing difficulty, several of us have had this and sometimes we found out it was caused by chemo or lymphatic involvement. Mine was due to vocal cord stricture from nodules. Again, what I take away from all of this is, NEVER feel silly reporting but don't panic or think "this is IT! This is the big one!"
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I had a marvelous Thanksgiving, laughing and chatting with friends and family.. eating the big meal.
My brain mets are back so i have been spending time assembling some of my stories.. I'll share a few here,. I have to do WBR again.. starting on Wednesday. yuk
by apple » Sat Nov 24, 2012 4:40 pmA trip to Greece
Part One:
I had decided to teach for a year at a school in Barrow, Alaska..$80,000 in exchange for a year's imprisonment in the far, far north. I was just about to mail in my acceptance letter, when i got a job offer from an old professor to assist him in his research on original biblical manuscripts AND babysit his two sons in the afternoons.
Did I want to live in Thessaloniki, Greece or Barrow, Alaska?
hmmm.. I don’t like the cold at all.
My travel plans were set. I moved my belongings home to Kansas City, caught a flight to New York and it was on to Europe. I left the states on a Wednesday and expected to arrive in Thessaloniki on Tuesday, 6 days later. I would take a ferry from Dover to Calais across the English Channel and then take a train or three to Thessaloniki.
I met some British schoolboys on the ferry and agreed that drinking some Black and Tan scotch was the thing to do. They had been drinking for a day or two it seemed and one of them cornered me near a railing and proceeded to force himself upon me.
Part two:
things were getting hairy with the British boy. I had a choice.. jump into the English Channel or be dragged into a closet thing. The weather was grey and foggy and no one was on deck so I jumped. Fortunately, my aggressor instantly got help. The boat stopped, a lifeboat was launched and I was rescued about 30 minutes later. I don't remember too much but know I spent the night in Calais and missed my train.
No matter, someone hooked me up with the American embassy or the equivalent and I was able to travel the next day. I had lost my traveler’s checks though and had no cash. I decided to go on a starvation diet.. I had to, I had no money. I was kind of fat at the time.
I had a 1/2 a sandwich someone left behind and some man gave me some Italian money. I bought a loaf of bread in Milan and walked the streets for just the perfect amount of time. I had to run like the dickens to make my train.
While traveling through Yugoslavia I awoke in the middle of the night to some military or police men coming onto to the train to get an old man off. They beat him with a baton and I jumped up to stop them. They took me off the train and questioned me. They didn't speak English though and the night I spent in the police station was a total waste of time. They let me reboard. I noticed that all the guys boarded the train wearing 2 to 5 pairs of jeans. Apparently they sold them to somebody wherever they were going. I was still cashless and quite hungry. I had been on the train or in custody for 3 days now. In Skopje I purchased a cheese thing with some money that a woman gave me.... flour and cheese baked into huge bars. The cheese was very artisan... a farmer's pungent cheese and the purchase weighed a pound i bet. It took me about 2 hours to eat in spite of my intense hunger.
I was almost at Thessaloniki and worn out... ready to call my contact.
Part three:
I arrived in Thessaloniki at 2.45 AM... 2 days and 2 hours late. I had just enough cash to call the guy I was working for and take a cab. I found out that all phone service was out. Apparently there had been a huge earthquake the day before on June 20, 1978. I decided to see if a cab could get me to my address. The cab had to take a detour because an arterial road was closed. The driver knew just a tiny bit of English and he told me he had to inspect the car. We drove into a field and he opened the back door and grabbed me and started kissing me. I went off! I had absolutely had it with problems. I kicked and yelled, grabbed his keys and ran about 30 yards away.. he was 50 and fat. I grabbed some stones for ammunition and every time he came close I hurled one at him. I drug my huge trunk out of his trunk which I unlocked with his keys and told him to scram (he knew that word). He apologized.. (he really was so sorry) but I yelled at him for quite some time....i gave him about 2 dollars after much negotiation (why, i don't know except to get him to leave).
So here I am about 4 AM in a field above the city with my trunk, very little cash (about enough for the cab fair) and i was starving. I hung out with my trunk till dawn and headed down toward civilization... about a mile or so. I found kumquat trees lining the city streets and ate about 40 of the tiny, perfectly ripe fruits. they were great. I found some older woman to ask directions but apparently my Greek was totally insufficient to communicate ANYTHING inspite of the fact that i had studied tapes for months and months and thought I had a 5000 word vocabulary. I stopped into a church to check it out.. sat in a pew and fell asleep for a few hours. I awoke around 11.00 and set out again in search of my address or a bank. My trunk was still in the field.
since I couldn't find my address on foot (I knew I was close) and since i was pointed in wrong directions by people who didn't recognize the address and i was tired of walking, i decided to find the American Embassy if there was one. I headed on foot down town.. i figured i had about 3 or 4 miles to go. I passed by one street that was severely damaged by the quake.... everything was a mess. I passed by one little grocer with everything spilled all around and boards and upended tables strewn about. I peeked in and a little, little old lady was sitting in the back drinking tea or something. I asked her if i could buy a green pepper but she didn't understand me and my coins were not right. She gave me a piece of some cheese so I started cleaning up for her. I worked for a few hours, distracted from my journey. Toward evening her grandson came in (he was around 30)... We worked for a bit and then he took the both of us to his house for dinner. His son spoke a bit of English and said he'd help me find the address in the morning.
I finally arrived at Bob's. His wife Susan and they two son's Thomas and Richie were happy to see me. It took me a couple days to find my trunk. One of the repercussions of my essentially foodless journey was significant constipation. I went to the pharmacy the next day and tried to tell them i needed a laxative. they didn't understand. I went back the next day and drew a picture of a butt with a plunger next to it.. The pharmacist and his wife laughed so hard.
Bob, the researcher was working on manuscripts from monasteries on Mount Athos. I was a woman and couldn't visit the monasteries or even get close.. so he had to bring the books to me. I worked in a library - so dank and hot with insufficient light. I pored over the manuscripts looking for similarities and anomalies in word choices... i was totally unsuited to the meticulous work and really disliked the older of the two boys i cared for. He was a precocious brat who was always acting out.
I really enjoyed travelling solo around the region but never made any friends really, and I got extremely weary of the men and who would follow me everywhere and constantly ask me out. Apparently an American woman was a real cool thing to date or marry. I cooked most nits for this little family... I cooked horse meat, which I didn't know was horse meat. Yuk,
I had my own room and balcony with a lovely view. I was mostly lonely the whole time i was there.. about 9 months.
I made the mistake of going with this one guy to his house to meet his mother.. she gave me some grapes and then left the house.. the guy got so excited he started kind of jerking and then ejaculated in mid air.
my god!
Part four:
Returning to the states was not non-eventful.
I found a bus that was going to Paris from Thessaloniki on a tour. They let me ride along for a ridiculously low price.. something like 100 dollars for the 3 day ride. Everyone on the bus was Greek and going to London for a holiday. My language skills had improved considerably and i had a great time visiting with some fairly learned people.. and acted as interpreter for the bus driver. I always sat in the very first seat.. it was if i was driving. the scenery was fantastic...
We arrived in Paris close to sunset. the bus driver stopped on bluff of sorts to rest and let the passengers take pictures of the sun setting over Paris and the Eiffel tower. I was sketching a drawing of the sun between the legs of the tower. I had gone off from the group a bit to find the perfect perspective. I was slightly bent over a wall. Suddenly i found the bus driver hugging me from behind.. rubbing against me and pleading for a kiss. I told him his behavior was totally non professional and kneed him in the groin accidentally to get rid of his erection.
sigh..
i arrived in London and had enough money to buy a plane ticket but not quite enough to ship all my clothes back. I asked for a couple trash bags and put everything i needed into those bags.. discarded my old clothes and the heavy trunk.. Actually i gave them to a homeless woman.. she was DELIGHTED, so that was excellent. I got back in line and returned to Chicago.
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I stayed with a great girlfriend for a couple days and found an apartment very close to where I used to live. I asked my old boss, the restaurant owner Hans, if I could work for him. I was an assistant manager at his restaurant before I left. He was delighted to see me, delighted to rehire and me and asked me if I'd do him a favor... i said sure.
Imagine his deep German accent...
"Mary - I just harvested my dope crop from the farm and would you keep the bags in your apartment for a few days" - until I can find a place to dispose of it?" it is not worth smoking and I just can't dump it in the trash.
I said "Sure". He brought over two big trash bags of dope and I put them in the closet of my bedroom.
To be continued. (I I can’t believe I have to write this story out, that I haven’t done it yet.)
The apartment was a small studio directly above Harold’s Fried Chicken at 53rd Street and Kimbark. a Hyde Park tradition.53rd Street was the ghetto’s edge… pretty scary. I had lived directly across from it, happily, with 3 friends for a couple years. There was a front door with access to the street and a back door abutting a trash alley in my studio apartment. I was already going to work on my 2nd day back in the states. I was wearing a black skirt, a white shirt, my Dansko Clogs and putting on makeup when the doorbell rang. It was about 3.45 in the afternoon. I went down to the front door to let my visitor in, but no one was there. I did see a small male student on the stairs – I had seen him before. Apparently the asshole snuck in the back door after ringing the front door bell.
I went into my apartment and into the bathroom. A strong, wiry man jumped me from behind and got me into some impossible choke hold. I couldn’t move or breathe. He pulled me into the closet with the two bags of dope (trash bags), and I guess assumed he’d rape me. I kicked his shins as hard as I could and was able to get my mouth free so I could scream. The college student heard me and came running and started yelling and doing jumping jacks. The attacker had about 40 pounds on him. Fortunately the attacker ran away and the student helped me call the police.
I was telling the police what happened – there were couple of them. I opened the door to the closet and one could smell the great outdoors.., The dope smelled wonderful, and the police just looked at each other, shut the door and kept taking my statements. They asked about the trashbags. I told them that I had just come back from Europe and didn’t have the money to pay for my trunk so I had put my clothes in the trash bags. They were ok with that… especially since a couple bags of actual clothes sat there with the dope.
On my way home from work, I always gave my sandwich, which I got for free to a little old lady name Chrystal, who made jewelry and sold it on the sidewalk. She was quite thin, about 70 years old, and was very grateful for the sandwich I gave her almost daily. She gave me a beautiful pair of silver earrings. …. 3 consecutive, growing silvered circles that hung from my ears, that hung like a snow man from my ears. I wore them every day for years. Everyone loved the earrings and bought many things from her. She was a real tiny sweetheart, with the most beautiful southern, black accent.. “Li’l chile – what would I do without you and your food?”
I lost one of the earrings the day of the attack.
Margot lived across the street from me. I had a girl crush on Margot. She was sooo cute with a deep husky voice from smoking constant cigarettes while she studied. Her hair was quite blond, cut into short blunt cut that grazed her chin barely. We were already friends before I had travelled to Greece. A couple days later, I saw her parents outside of her studio and we started talking. Apparently Margot was brutally and repeatedly raped over the course of a couple days. The asshole had raped her every which way, kept her in a bath tub of cold water and did some coke bottle type of thing. She was pretty torn up and beaten. Her parents were devastated. I didn’t get to see Margot for about a week. It was so sad to see this poor thing so beaten down. She was in psychiatric care for quite some time and move to an institution for a few months and then she moved to Madison to live with her parents for the rest of what would have been the school year.
I got a call from the police and they wanted me to come down to the station to try and identify some things, namely an earring that a sharp office had remembered me wearing on the other ear.
I was able to prove (with Chrystal) that the earring they had in the evidence pile had been made by Chrystal for me. They guy had recently moved into a YMCA ½ way house just down the street for released prisoners. He had spent about 10 years in jail for a rape charge. He was reconvicted. I lost track of Margot. I hope she is ok.
That is enough for now. This is a bit of a rough draft. Thanks for putting up with it.--------------------------------------------------------------by Manna » Tue Nov 20, 2012 4:13 pmIt seems like you're calling Willie Misconi and Minnesota Fats bats. Bats invited themselves in ... and signed the wall.
It's strange that you continue to call your mother by her first name. It seems to imply a lack of affection between you. If that is your intention, it doesn't come across strongly enough. And if it's not your intention, then a warmer title might be better.
Also, it would be nice to write this in scenes. Maybe give us a sense of what the bathroom looked like before the hole was cut, and after. Dust? Trinkets? The smooth ceiling getting a jagged hole? The noise? The more details, the better (within reason).
Also, for the scene of you catching the bat, I'd be interested in what was going on in your head, how the bat looked on the tree, how it behaved upon capture.
I don't get what the pool playing/pool table aspect has to do with this story.
I think there's a lot of potential in this. So much, that I'd be interested in taking it and re-shaping it for myself.
I hope this was helpful.
m
Manna- Posts: 1983
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by apple » Wed Nov 21, 2012 3:38 ami absolutely adored Millye - we all called her mom. Sometimes we called her Millye cause it is such a cute name. She was the best ever.... the mother of nine. I miss her dreadfully. She died in 2004. She really was my best friend. I really wish she was with me now. I was the oldest kid and we always had a special bond. I have a unique family with a brain damaged brother who is very cool.. just 14 months younger than myself.
Willie Misconi and Minnesota Fats signed the 3rd floor bedroom wall because the pool table was up there for a decade or so. and FATS rhymes with BATS. The pool table article just happened to be published a couple days before
I decided ti 'pulblish' the bat story.. Their signatures are still there, tho covered with wall paper and now paint. The pool table and the bats were in the same room. I used to play on that wonderful table in Raytown. I'm taking son #1 to go play at the pool hall next week. There is a link to the published story of the pool table is in the 'story'. I tend to be very succint... don't like to waste ink.
I don't know why i caught the bat.. because I could, I guess. I was about 10.Last edited by apple on Wed Nov 21, 2012 7:37 pm, edited 5 times in total.
apple- Posts: 33
- Joined: Mon Oct 01, 2012 9:53 am
by apple » Wed Nov 21, 2012 2:44 pmManna, thank you. Your post reminds me that i need to bring my writings up to snuff. I have saved many anecdotes over the years and people seem to like them. I have a degree in creative writing - I've never used it really... I've edited and proofread, worked for farming publications, and law firms tho. (i was a patent agent for a while. talk about boring).
About catching the bat... I spied it on a tree at shoulder height. It was only about 2 inches long and motionless. I found a trash jar on the street and gently covered the bat and then slid a paper under neath before running home. I was pretty darn happy.
Here is another story for you. As I said - i like succintity.-------------------------------------------------------
A funeral in Kansas
Here in Kansas, a brother of a friend of mine, a fireman with a gambling and drinking problem, committed suicide in jail after being picked up for driving under the influence. One of my free lance jobs is playing the organ at funerals.
He lived in on the northwestern side of the metro where the houses are pink, grey and crumbled, surrounded by wild dogs, and sometimes have Chief's logos painted full size on the side of the house that has NO windows. Tattoo parlors abut homemade churches of questionable denomination and the roads have no curbs or drainage conduits.
William was a bagpiper. After the funeral, which was well attended by sturdy legged firemen whose pants were all too tight, who sported handlebar mustaches and shaved heads and probably had Harley-Davidson wannabees in their detached sheds, 25 firefighters gathered in the vestibule with 8 fully dressed bagpipers.
A fireman said "We will sound the final alarm for our brother William" They had brought at least 8 big brass bells (the kind that used to ring in firehouses to call the firefighters and dangle above the front of the trucks). The 8 bells started clanging in a reverberating church of stucco and tile, the bagpipers started playing, and the huge old church bell started peeling. For at least 3 minutes this unbelievably loud cacophony sounded. The congregation was clustered at the back of the church by the firemen and bagpipers. After about a minute of this wonderful noise, everyone broke into the most unfettered sobbing I have ever witnessed. Not a person was spared from the sobs of utter sorrow.
When the clamor died, one of the firefighters, I guess to lighten the mood, said "Dang it - Bill owed me ten bucks". The very elderly mother of William opened her purse and gave the firefighter a ten dollar bill which he stuck in his pocket to the dismay of all the other firefighters.
Life is very short.---------------------------------------I have a brain damaged brother.. i am barely 15 months older than he is and we have always been very close. (i am the only sibling he'll obey because i am older than he is.) He was given a small house when my mom died and here is a pic of his mulch. he politely asks the neighbors is he can rake their leaves in the fall and have them. the yard is about - I'm not sure = about 35' by 20'. He uses the mulch but also gives it to volunteer community gardens.. what a nut. He won't even give me one bucket... "Mary - the mulch is for the poor! He is out working, rain or shine, every day. He'll call occasionally and tell me his is coming out to help me with yard work. I just adore him because he is sooo truly good. he goes to Mass once or twice a day, works full time at the post office and does good works for people... paints their house for free.. things like that. I will list some later if this thread gets going.
the tomato plants are on the right.
I have also taught him many duets.. songs from musicals and kid songs. here we are playing 'row, row, row your boat'. you can see how happy I am.. he is such a wonderful trip. My little sisters must have been teased about him.. They don't like him at all really. He manage to graduate from college (my dad was a professor and that helped) but went to a very special special=ed school.
I have him over for dinner once or twice a week..... if he is not too busy.
I have also taught him many duets.. songs from musicals and kid songs. here we are playing 'row, row, row your boat'. you can see how happy I am.. he is such a wonderful trip. My little sisters must have been teased about him.. They don't like him at all really. He manage to graduate from college (my dad was a professor and that helped) but went to a very special special=ed school.
I have him over for dinner once or twice a week..... if he is not too busy.
more later maybe.. I am having trouble navigating the computer while eating povatica.now I am having trouble typing while eating whipped cream.0 -
YAY, good to hear you had a fine TG. Stories last forever, thanks.
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Cheers apple - looking forward to reading more...
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Hi Michelle, I finished wbr (15 treatments) on Oct12. Feeling a little more steady on my feet but not 100% yet. My feet and fingers have neuropathy from chemo, the rads seems to have increased it some. Overall I'm doing fine. Still some fatigue. I find if I'm active one day, I need to rest the next day. I'll get my next MRI (1st post rads) in a couple weeks. I still feel activity in the brain and pray that it is the rads still working and not mets activity.
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Kathy Kemdrx..... how are you feeling?
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Enjoyed reading your stories, Apple. I was in Yugoslavia in 1978 too! We probably just missed each other in Skopje.
Looking forward to reading more.0 -
well mri showed a new one 4.5 mm so we get to play wack-a-mole again at least the cyberknife is working 3 are gone
love and blessing
chris
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Here's a link to my blogpost about our trip to Vegas and the hot air balloon ride.
http://mch-breastcancer.blogspot.com/2012/11/brain-rads-results-thanksgiving-and.html
I did find my endurance lacking, I tired fairly easily. But I am so glad I didn't postpone the trip as my MO had suggested. The RO said to go if I felt up to it and I did.
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Good for you Michelle. So glad you were able to enjoy yourself. I hope we can meet one day at DF. My next apts are on the 17th and 19th. Any chance you are going to be there on either of those days?
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Frapp - my DF oncologist has handed me off to the Londonderry, NH oncologist who oversaw my chemo last year. I won't be going back until I qualify for another clinical trial - my brain mets need to be stable first. That said, I would drive to DF to meet up with you after the first of the year if I continue to do well. Let's touch base then and see how we both are doing.
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Sounds great. Here's to stability.
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Did anyone's hair grow back after WBR? I swear mine is coming back...only to be lost again by Carboplatin and Gemzar later this month. My MO said it would be gone forever, my RO said maybe it would come back but be thin or look like male pattern baldness (that sounds so attractive...lol) and the RO Nurse said it might all come back. My daughter and DH said I have super hair follicles but I was expecting to be bald forever. My daughter buzzed it down to 1/2" on Thanksgiving and I still have quite a bit of that left after it has done its shedding. Weird! Or lucky! Or both!
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Haven't experienced WBR but losing it permanently I think is typical. I have also heard of the male pattern baldness effect. For some people it does grow back. A local woman I've met here had hers grow back, albeit very slowly and not at all in one particular spot. The rest of it covers that spot though. I'd also be curious about the experiences of other people.
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JillThut- My DD had WBR and hair stated regrowing after about 2-3 months. Now, a year later she has a full head of hair. It's gray and curly and fine but looks great and she is happy to have it.
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