Calling all TNs
Comments
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titan I got through my daughters wedding July 2nd and when all was said and it it was perfect. got so many hostile stares from her and difficult answers int he weeks preceding. These kids are stressed and boy does it rub off on us. My husbadn seemed to be less picked on but it was weird and then the day was perfect.
Laura Jane you look beautiful. Hard to see what you mean but you know what you see.
Lowrider...so sorry you are back again. Switching has happened. Someone here jsut wnet for triple neg to + but they feel her test wasn't corrrect. This was after several dose dense chemos.
Belleeast..so sorry to hear about your port.
Went up to 90 % yesterday with TC. Feel so bloated and burpy and sure enough got the hiccups in the night..for a long time so I took the drug of choice for it...thorazine....love the label..for psychosis, schizphrenia and hiccups. Well they stopped but I feel like I am blownand as though my stomach has shut down.
Anyone have anything to say on differences in radiation centers..switching and trying to figure out the best choice. Advice welcome.
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LJ - you are a beautiful woman, love the hair! How are the SEs treating you? I'm so glad your pain is under control. Keeping everything crossed for you... LE is lymphadema (sp.) - I have a mildish case of it, and it is flaring up right now, so I suppose it could be responsible for the node. I hope so! My PET/CT is currently set for 9/26, but I am trying to get it moved to 9/19. They only do them on Mondays where I go.
Titan - Bridezilla will go back to DD as soon as the champagne is served, lol. You are doing great! Your vacation sounds lovely.
belleeast - so sorry about the port :-(. They might be able to do chemo in your arm - I had my first treatment before my port was placed. I hope you can get started soon.
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Trying to get my PET/CT moved up a week, just for my peace of mind. I know I can't change anything, so I'm trying to be ZEN about the whole thing - lots of meditating these days. We went out to dinner last night to a great Italian place, and I enjoyed my wine and pasta bolognase without too much guilt. At the very least, I'm enjoying my 2-week chemo break!
Hope everyone has a great weekend!
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Thanks Susan..it's good to talk to someone who has been there done that with their own Bridezilla..I realize that she is stressed...she just graduated college and now a wedding..plus she needs to get a job in her field...soon..plus tuition bills coming soon...oh yeah I feel her pain...I'm stressing out about it too...we just kinda tiptoe around here..its the safest.
Hope everyone's weekend is going ok..our county fair started today so we are going tomorrow after the Browns game...I'm ready for some Fair Food!
Belleast..I hope your infection clears up quickly..I know you are anxious to get on with your treatments...
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Suze..do you do yoga also? I still want to sign up for some classes soon..just haven't done it yet.
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Titan - Thanks for your guiding hand in the very complex level of the abc's of BC. I guess I am TN. You've got to admit, when they tell you, you have BC, they leave all of these little subtleties out of the mix. I assume that it's to see how far you get before your next appointment.
I read about TN daily, trying to play catch up with the idea of surgery, smiling @ all passer-bys, doing laundry, getting ready for a BBQ, grabbing paperwork, dealing with my insurance (Talk about a walk in the dark), and then trying to hold my own in the discussions of what TN is with my family. My son and daughter-in-law appear to be way ahead of me in their research which can be over powering @ times.
I'm glad you connected with me to help me identify what's going on. Surgery is this Friday. Told my surgeon it's been a whirlwind affair and asked if I got a pink bandage when they remove the breast and nodes. I've come to realize surgeons practice in front of a mirror to maintain that serious, concerned demeanor. I don't think you can trust a surgeon who doesn't smile, do you? LOL
Have a great day. Dishes - freakin' -dishes, with no time off for good behavior.
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Hi. This is the first time I've posted. I wish you all the best for your surgery. I had my lumpectomy in Feb. I was very lucky to keep my breast as my tumour was originally 7.5cm. The chemo shrunk it to 2mm! All my lymph nodes were removed. 4 of them were involved. I must say I was so scared of going into hosp for my op, but it was nowhere near as traumatic as I'd anticipated. I was treated like royalty! I had 3 rads & am now doing well physically, but struggling mentally. Now the treatment is over I feel that I can only now start to try to come to terms with what has happened. My GP has referred me for counselling which starts on my 44th birthday. On my last birthday I had CT scan to see whether the cancer had spread. It was the longest week of my life waiting to hear that there was no sign of it elsewhere. The Triple Neg aspect of it frightens me, but I try now to live one day at a time. I'm hopeful that the counselling will help me cope better. It's wonderful to read other people's experiences & there are many positives to focus on. Sending my love to all of us going through this experience xx
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rachers, I am so happy to here of your clean ct! That is great news. I worry about treatment being over, but then again I worry about it not being over because that means something else has shown up! I have 7 more weekly abraxane, then surgery then rads. I am wondering if I will be doing more chemo after surgery, I guess it depends on pathology report. Sounds like you had a great response to treatment. Did you have scans shortly before surgery? My last pet/ct said my im nodes had resolved and nothing was seen in the breast or anywhere else, including axillary nodes, where scans have not shown any activity. I just worry that the scan is not showing everything. I have a ct on the 22nd, halfway through abraxane.
Suze35, how often do you do a pet scan? I think my doctor is a bit scan crazy! I just had a pet on July 29th and he wanted to do another Sept. 22. The pet clinic suggested just a ct with contrast for now which I am comfortable with because I am sure I will need a pet when done with the abraxane and before my surgery.
Jazz, is that a little birdie for your avatar? So cute! I have a blue front amazon named Jazzy, she was given to me by someone who did not want her anymore. And why, oh why do we always have to do dishes? They never go away! Plus the non ending laundry, and I don't even have kids!
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Titan - I do a beginners yoga class once a week. I was initially not interested, pushy MIL story, lol, but I find it really useful. A good workout, but also relaxing.
Bak - I get a PET/CT roughly every 6 months, so this next one will be my 3rd in a year. I have also had an abdominal CT mid-July, 3 brain MRIs, and a neck MRI. It seems like a lot - I'm hoping that as I get used to my new aches and pains, I won't freak out and ask for scans as quickly. If my next PET is clear, we won't scan for at least 6 months unless necessary.0 -
Hi everyone feeling like I need to take advantage of my week off before port placement on Friday. I've decided to take a mini trip. Pain is tolerable today and I expect it to get better the next few days.
I am going to New York on Monday for just a couple of days want to meet for lunch either Tuesday or Wed.?
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Oh..LJ..would love to meet you for lunch but we are moving the son to OSU on Tuesday...how about lunch in Columbus on Tuesday afternoon at Buca di Beppo? How far is Columbus from you anyway?
Jazz! Glad to see you on the TN thread...There are alot of pages to read here..sometimes we are a little off topic about TN but we can't talk about it all the time..but it IS still the main reason we we are are here..
And welcome Rachers!..awesome news on the clean scan...!
I've never had a scan...I'm too chicken..you ladies that request them amaze me..I definitely have my head in the sand..or whatever that saying is.
About being TN...I don't know..you can go on the Internet..and read the blah, blah about being hard to treat, blah, blah..but if you really read it..it is because tamoxifin, etc. can't help us...ok..whatever.
People say on here that it is really crapshoot..and now I really believe it is....
Whenever I hear people talking about the worse kind of breast cancer I know exactly what they are talking about..I say..well that would be me but I'm still breathing and I'm still here...for now...and hopefully for awhile yet...
It's kind of fun to continually amaze people..
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Titan, I never had a pet /ct the first time around when I was stage 2b, just one xray and one bone scan before I started treatment, that was it and I was fine with it! Now with my more advanced stage and scan happy doctor I have had some kind of image done every 2-3 months! I kinda prefer the no scans but it is a relief if you get good news!
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I'm surprised everyone doesn't get a PET/CT scan when first diagnosed. That was the very first test I went for after my diagnosis. I remember being so scared I cried the entire 6 days I had to wait for the test then results. My alergies/asthma had been seriously out of control for a couple of months prior. My husband and I were positive it had spread to the lungs. We were so happy to find out it had not spread, then back to devasted when we heard TN and did some research. Now I refuse to google BC at all. I stay on this site only.
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Thanks Titan. I'm very big on the idea of conversing about life and living. And I know I'm feeling mighty special being in a 1% percentile. Mighty special. Where's Mr. Rogers now? " You are special to me", LOL. Somehow I get the feeling that a Triple Negative is something like a Double Whammy only a little whammier. I guess I'll know starting next week. The imagry of losing my breast and walking lopsided flies through my mind every once in a while and I wonder if I'm going to need a lift in my shoe on that side.
Hi Racher and bak94. thanks for sharing and caring. Yes that's my baby bird bak - about to have it's wing clipped. The surgeon said the "team", didn't want to break both my wings at once. WHAT?
You'll have to forgive me. They say ignorance is bliss and I have to say I'm still bordering on the blissful side of ignorance and have little or no idea what my earth suit has decided to involve in.
Hi mccrimmon, What is a PET exactly? They've moved me through tests so fast I may have had one and didn't even know it. Is that the same thing as a CT or ultrasound?
Hope all of you are hot flash free and sleep wonderfully tonight. Thanks for being here.
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laurjane - have fun in NYC. I was just there in June with my daughter and her girl scout troop - had a great time. I really want to go visit during the Christmas season when everything is decorated for the Holidays. Friends have said that it is beautiful! I think that I will put that on my to do list...Have a good day everyone
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LJ - I might be able to swing lunch on Wednesday. Let me talk to DH and see if I can get down there! We can swing by Horatio and do a little retail therapy - or just window shopping
.jazz and rachers - I'm glad you found us, but sorry to have you here. Jazz - the internet is full of scary information, and my doctor always tells me - add 5-10 years to that date, it is that old. I like your approach to this mess
. Scans for me are a necessary evil I think. If I had been an earlier stage or had a better response to chemo, my doctor would definitely be in the "as needed" camp. But we are both on the same page - the earlier any progression is caught, the easier it is to treat. That isn't what the "stats" say, but it makes more sense to me
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LJ- love that you posted a new photo! You look maavelous! Catching up with everyone's progress and a welcome to new TN's. My thoughts and prayers are with you all.
Good news, I got a job! I'm a little nervous since my brain is still a bit scrambled, but its in my line of work and the pay is good!! I haven't worked for 1 1/2 yrs, but I am ready to get dressed and go somewhere other than the dr. office. I have had so many difficulties over the last 4 years...I keep thinking this will probably be the time for a reoccurrence! Someone needs to shame me into just being thankful.... hope for things ever being good again has flown far far away. I'm just glad I can quit spending my retirement funds.
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Laurajane: What a great idea! It's Fashion Week in NYC, so you must do some retail therapy! I wish I already lived closer because NYC isn't that far away in a flight and I could come visit you where you live as you aren't far at all.
Suze & Titan: I see a group meeting in our future, after all I will be living so close to so many states how can I not see everyone??!!
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tnbcRuth: Congratulations!!! You really deserve a good job and stop thinking recurrence right now. Go and live and enjoy your life. That goes for all of us-we can't just sit here and wiat for the other shoe to drop-it's important to live and to live well. Hugs!!!
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Maybe we could meet in Covington, KY...about a 4 hour drive for me
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Titan: I will be in Kentucky come November!!!
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Ruth, congrats, you will do great!
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Ruth - congratulations and good luck!
Suze and Mccrimmon - I'm with you on the scans. My dad's a retired ob/gyn, 15 years out of practice now, but he said in the 'old days,' the first thing they did was an x-ray, liver function test and one other test. Now it seems like they only do it when there appear to be symptoms suggesting it has spread. I'd like the peace of mind. It will be 3 months from the time I found the lump before I have surgery, it seems, so even though I'm technically Stage 1, if this cancer is anywhere near as adventurous as I am, it's already gearing up to hit the open road and see what else it can discover...
Jazz - Welcome. And like someone else said, read the Internet with a grain of salt. There are lots of women here who show this is something you can beat, or at least keep swatting away successfully over time. Best of luck.
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Ruth- yes, NY is gorgeous during the holidays.
Suze - I'll look forward to meeting you as long as i get the ok from Onc. What is Horatio?
Titan -I think Columbus is about 4 hrs away.
MBJ- So looking forward to meeting you in November.
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I think a meet up sounds like a great idea! I'm pretty good traveling anywhere :-).
LJ - Horatio Street is the location for a Louboutin boutique near the Village :-). I prefer it to the 5th Avenue location, they aren't so snooty. But Bergdorfs is always good too, lol. I love to look and drool.0 -
I want to go shopping in NYC! Maybe sometime soon! The shoes (I know we all like shoes) I bought for the DD's wedding are totally awesome..the only thing is..the DD doesn't like them...they have 4" heels..are gray/black..very cool....of course the DH said..can you dance in them..duh..who couldn't dance in 4" heels...I tried some 6" heels on..well..I couldn't walk in them..I'm way too old for 6" heels...4" I can deal with.
Oh yeah..this is the TN thread..not a shoe thread.
Went to the fair today..had a blooming potato and an ice cream cone....know I was bad but dang it was good.
Will jog, drink tea and take my many supplements tomorrow...promise.
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Okay, speaking of shoes....I've been told I must have been a centipede in my last life or a direct descendent of Imelda Marcos. I LOVE shoes! I hate breast cancer but I LOVE shoes!!!!
Titan, fair food taste so good.
I went to a really nice fundraiser today. It was an afternoon tea to raise money for cancer research. It was held in one of the organizers back yard. There were two seatings of 40 women for each and each table was set up with fine linens and bone china. They served tea and home baked scones, sandwiches and cupcakes. It was a traditional English tea and it was "loverly!"
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Sugar - how fun! As a Brit in the US, I don't get to do that kind of thing very often.
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Did someone say SHOES! I don't know I woman alive that doesn't love shoes.
Titan-Dance away in those heels. I can't wait to give a wedding. I think my DD may tell me to tone it down, or they may elope to avoid me.
LJ-Pretty lady alert!!! Enjoy your mini vacay. I think we are all due one. I just can't escape until my birthday (December).
As far as scans go I don't want any either. I had my legs scanned after chemo cause they were so sore (which is normal Dr. just want to make sure no blood clots were forming). I drove that tech crazy. Do you see anything abnormal? Can you turn the screen more my way? Can you run back over this area? So no more scans for me. I turn into a pure animal.
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Fighter,
I had no idea you could ask the techs questions. I've just always paniced in silence. Now that I know I'm afraid I will drive them insane. I know my onco was worried my anxiety was going to get the best of me during treatments. I've got one left in a week and a half. I sure hope he'll keep prescribing the xanax and anti-depressants for me.
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Mccrimmon-Hey I asked anyways. Silence and waiting ain't me.
You can make it sweetie. Take a walk, find a hobby, but I do know that the last chemo feels great. When she removed the IV I screamed and then got out h%ll out of there fast. But of course the SE took over, but knowing this would be the last time made the SE bearable. I threw everything chemo related away and cursed it also. Felt Liberating!!
Get focused on regrowing your hair and moving on with your life. I just wanted to be normal again. I didn't want a pity party I just wanted to resume my life and I think that's what got me through.
You will be fine. Keep repeating that!
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