Calling all TNs
Comments
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Bernie--that's great. I went out with an Irish man for many years--spent alot of time in Roscommon (mostly in the pub!). All so true!
Congratulations, Luah.
Wiggy--I'm in the UK too and will be monitored closely after treatment. I'll have exams every three months for the first two years and then six monthly thereafter. I asked my oncologist about scans and blood markers. He said they don't do routine scans unless a patient absolutely insists on them because there's alot of potentially unnecessary exposure to radiation, it causes enormous amounts of stress and anxiety and the evidence shows that frequent scanning doesn't have an impact on outcomes. Regarding the blood markers, he told me that they are more reliable for tracking progression if the cancer comes back than they are for predicting a reoccurrence. He told me to follow the two week rule. If something's bothering you for two weeks or more, get it checked.
I had my first of three Taxotere last Wednesday and am finally emerging from the fog. This is so different from the FEC. A sneaky one...fine until two days after and then wham! Felt like I'd been hit by a bus. Better now though, six days out. I'm far too busy to be dealing with this "being ill" crap!
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Brower: Hair started to grow while I was on taxol, came in grey and fuzzy. But within 6 months I had a pretty cute pixie. Before BC I had long thick hair; it is still quite thick but I keep it a shorter bob length now... much more convenient!
English: It's true each of the chemo regimens seems to have its own pattern and schedule of SEs. Now you know what to expect when, I'm sure the second one will go better. My sister was on taxotere and found the first round miserable. But the others were more manageable as she knew to take it easier on her body first few days.
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Thanks, Luah. That's comforting about your sister. I'm glad I didn't have the Taxotere first. I'm telling myself that no matter how bad the next two are, I'm coming in to the home straight! That makes it feel more manageable.
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HAVING A BAD DAY.......... READ THIS......A father passing by his son's bedroom, was astonished
to see the bed
was nicely made, and everything was picked up. Then, he saw an
envelope, propped up prominently on the pillow. It was addressed,
'Dad.'With the worst premonition, he opened the envelope and, with
trembling hands, read the letter..."Dear, Dad. It is with great regret and sorrow that I'm writing you.
I had to elope with my new girlfriend, because I wanted to avoid scene
with Mum and you. I've been finding real passion with Stacy, and she
is so nice, but I knew you would not approve of her, because of all
her piercings, tattoos, her tight Motorcycle clothes, and because she
is so much older than I am.But it's not only the passion, Dad. She's pregnant. Stacy
said that we will be very happy. She owns a trailer in the woods, and
has a stack of firewood for the whole winter. We share a dream
of having many more children.Stacy has opened my eyes to the fact that marijuana doesn't
really hurt anyone. We'll be growing it for ourselves, and trading it
with the other people in the commune for all the cocaine and
ecstasy we want.In the meantime, we'll pray that science will find a cure for
AIDS, so Stacy can get better. She sure deserves it!Don't worry Dad, I'm 15, and I know how to take care of myself.
Someday, I'm sure we'll be back to visit, so you can get to know
your many grandchildren.Love, your son, Joshua
PS. Dad, none of the above is true. I'm over at Jason's house. I just
wanted to remind you that there are worse things in life than the
school report that's on the kitchen table. -
Hot Damn, Bernie, That was a good one. Considering that I been through life with a teenage boy....who didn't always do so good in school. That last line made me laugh out loud. Thanks
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That was funny Bernie!!!!
I am still in the hospital., but they will let me go soon. Everything looks good so far, but because of my brca 1 status they are going over the ovaries and tubes to make sure there is nothing there. my left ovary was attached to my bowel, so I guess it was a bit tricky to detached, Doc said it looked like I had endemetriosis, which is probably why I had heavy bleeding for all those years. So happy to get everything out. I have a bit of pain, but it seems to be getting better by the minute. They had a bit of a hard time waking me up, freaked my husband out! I think the anesthesia guy gave me extra because of the time I woke up in the middle of surgery!
I hope everyone is well. I will check back later to read more posts!
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Ok ladies I am a little confused. Earlier this month I scheduled my total bmx (both sides) with reconstruction. My first question was how long will I be out of work. The scheduling lady said 6-8 weeks. Well today I went and picked up my fmla papers from the bs office and much to my surprise they have me returning in 4 weeks. Surgery is Nov. 19 return to work on Dec. 17th, that is just 27 days. I work will severely handicap middle school children (big kids not babies). My job dose not offer any light duty. I have to get these kids out of their wheelchairs into standers and onto a changing table. Unfortunately, I do not have a desk job. How am I going to be able to lift them in 27 days!!!!!!!! I called the bs office as soon as I noticed and the snippy little bitty on the phone just laught and said "oh no you do not get 6-8 weeks for a bmx you only get 3-4" If any one else had this surgery, how long were you out?
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Browerl, first of all, the snippy little bitty on the phone does not determine how long you are or are not off work -- each situation is different. That said, I would insist on talking to the BS and explain, probably again, your work situation. I am thinking your leave will be extended. When I have had surgery (not related to BC), my docs have always worked with me and the environment at work.
One more suggestion, ask to go back 1/2 days for at least two weeks to ease back into work -- after your 6-8 weeks off. This was actually told to me by my ob-gyn after a C-section with a broken leg. O_o
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If you are gettin recon at the same time I thought the recovery was a little longer??? Not sure as I did not do it together. For bmx the recovery time was quick. I just could not lift anything heavy for a while ( which sounds like you may have to do).
Just back from the girl's trip to Mexico..was great now I have to get ready to leave for NOLA in 10 days for my recon surgery. probably gonna drive as my arm and flying on a plane do not get along. Also not sure if I want to fly with tubes sticking out of me! It takes a bout 12 hrs to get there by car but flying would take about 8 hours but done in one day...will take 2 days to get home for sure. Tough call!!
Missed you all and will catch up when I can on you all. Hang tough my sisters and let's keep out chins up!
Maggie
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I would think that is a bit soon brower. I was out longer but I had complications, I had an infection and my incision wouldn't close. For me even doing just the bmx the recovery was not quick, and I was quite uncomfortable for a long time, actually still am. Not trying to scare you, it's just that everyone is different. I am now worried about only having 2 weeks after my hysterectomy, feeling a bit sore and my job is physical also.
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BAK - here in New Zealand we are not allowed to go back to work until the sixth week after a hysterectomy and even then cannot lift, vaccum etc. Your time off doesn't seem long at all especially as your job is a hard physical one. I agree with Pinky ask your surgeon about time off and after that go back part time if you can until you feel stronger.
Can you tell me if you had pain with the gas from the oophorectomy and was there any nausea. Glad you finally came around from the anaesthetic!!
Bernie -great joke.
Mags - glad you had a great time in Mexico and wishing you well for your recon.
Taz - how is the radiation going so far.
Saw my BS yesterday. Got to have a mammogram on the remaining breast (not looking forward to that) and an ultrasound to check out ovaries and the liver. Also got to have my port out, not looking forward to that either. I am having a local anaesthetic for it so hopefully it won't be too bad.
I'm finally going back into work on the 5th November so my chloe will be creating havoc while I'm gone no doubt especially with the old fellar not here either during the day.
Have a great day ladies. Thinking of everyone especially those having active treatment and those who will be stressed and worried. Big hugs. Annie
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Bak - same here and no driving for the six weeks either.
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Haven't posted in a few days, but I do check in a read up. Just wanted to let you all know I think of each of you everyday. I am doing well. Was having alot of trouble with shortness of breath and coughing. But finally after my 2nd round of meds. I am doing better. Thank God, cause my mind wanders...
((hugs)) to all and I hope each of you are enjoying life the best you can...
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Annie: Rads so far all OK. Skin holding up. #9 today and meeting with RO today, just our weekly meet.
Hoping all are having a good day.
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Brower, Do you work for a school district? If so is there a sick leave bank? That's another way to get more time if needed.
Tazzy today is # 11 rad for me so looks like we're on the same schedule and hopefully looking down the home stretch!!
Be well everyone ....
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bowerl: First of all, under FMLA you have 12 weeks of job protection in a rolling calendar year under federal law. ( For example, my surgery was in Feb. Between the surgery and chemo I used my 12 weeks by July 23rd. I am not eligible for FMLA job protection until Feb. 2013.) It is entirely up to you and our surgeon when you go back to work. The fact that your job requires lifting will lengthen your recovery time. DO NOT let anyone tell you otherwise. These people in human resources that push paper all day long have no idea what we are going through and have no sensitivity. (I'm having a flash back to conversations with my insensitive HR person.) Good luck. Remember, follow your doctor's instructions and make sure he fully understands your job duties.
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njpm: How's you skin holding up. Since I started the saline compresses the redness and sensitivity has really improved. I was worried when it happened so quickly. I still lube up 3x per day and the Doc said that is good.
I am so excited. I just booked a flight back to England for November 21 - December 5 to see my Mum, Dad and Sister and her DH. My Mum was all snot and tears when I told her - but I knew she would be.
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Taz - good on you. Will do you the world of good and your mum as well. Have a great time but don't forget us.
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ok it was not the hr at my job that said for weeks it is the paper pusher at my bs office. She is the one that answers the phone and will not leave a message for the doc to even call me back, I know the bc would give me longer. Any way I called her and gave her a piece of my mind and she said the bc can only give me 4 weeks that I would need to get the rest from the plastic surgeon. Therefore, I took him the paper work today and he ask me "when do you want to go back" I said idk I have never done this before and he said that I would need at least 6-8 weeks. I can not wait to see my bs on 11/7 and tell her about the bitty in her office!!!!!
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You go brower
I could never forget you all. My Mum would love your's and Bernies jokes.
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Bernie..my son may be coming to Ireland this summer for school...if there is any way at all....dollar wise..I will be there to visit him...we will have so much FUN! I am part Irish by the way...
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A friend of mine just told me her niece, age 38 was just diagnosed with tn,,,everyone I know has it..can't believe it is really considered "rare" I know that "they" are researching and "they" are concentrating on us now..but things need to move a little quicker..
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Titan - a friend of mine rang as she has got a friend with it who is about to have BMX. She wanted to ask me to talk to her friend as she was really nervous. Made me concentrate on being positive for this lady to put her mind at ease bless her. I know what she is going through. Enough is enough now. All this talk of treatment thats coming for us. We need it NOW though I didn't say this to the lady cause she has got enough to worry about at the moment. Realisation will come soon enough for her.
Bernie - yes I forgot about the six week driving ban, same for us here.
Annie
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brower...get em girl....attack!!!
Tazzy...glad you got something to look forward to!
Titan...I agree...this is epidemic
to all my sisters...love to you all...just cannot keep up with everyone...
Dawn (inmate), Hope and Karen...extra hugs your way and keep strong
Maggie
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Browerl, I once read that if the person who answers the phone pulls the crap that she has, it absolutely needs to be reported to the doc -- what she has done is totally unacceptable. I hope that time will not lessen your anger. You have enough on your plate, you do not need to be arguing with a wanna be doctor. You go girl!
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Titan - oh yes, we would have fun. Let me know when.
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There is a dangerous virus being passed around electronically, orally, and by hand.
This virus is called Worm-Overload-Recreational-Killer (WORK). If you receive WORK from any of your colleagues, your boss, or anyone else via any means DO NOT TOUCH IT. This virus will wipe out your private life completely.
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Hello everyone,
I'm new to this board. New to BC. Only family history is my grandmother - dad's side. Just had lumpectomy on October 8th. Got clear margin but not enough of a clear margin on one side, so we're going back in on Monday the 22nd. Due to my age, they wanted a wider band of clear margin. I'm 46.
Found out this week that I am Stage 1 Grade 3 and triple negative. Tumor was 1.2cm. Lymph nodes are clear. Bone scan clear, chest xray clear, still need MRI of liver but they don't seemed to worried about it. Since I'm TN will it require a masectomy or is there anyone like me out there that just did the lumpectomy?
My head is swimming after reading the pathology report. Haven't had appointment with oncologist yet got all info from my surgeon who specializes in breast cancer surgery. I'm a little stressed to say the least it's only been 1 month ago that I had the biopsy and less than 2 months ago when I had my yearly mammogram. That's how they found it. It's way in the back so I couldn't feel it. Thankful for the mammo tech who got it all in the machine or otherwise this could have been worse.
Thanks
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Hi txjunebug. You are so welcome. I only had a lumpectomy - March 2011, luckily my margins were clear and no lymph node involvement.
It is not an easy journey and it does take time for the realisation to set in.
The ladies on this forum are superb and will help you all the way through. Any concerns or questions, please feel free.
Bernie
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bug - there are many of us TNs at different stages who had a lumpectomy. Being TN does not mean you should or should not have a mastectomy.
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