Calling all TNs

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    I asked my sister who is a nursey in the UK about what to get them... she said fruit, donuts, cookies and hand cream and then more handcream cos of all the bloody hand washing - so that's what I got.  Would you agree kathyrnn.

    JazzyJ... please try and cut down on the 10 hour days... this all knocks the crap out of our system and we need to focus our energies on getting better.    I have the neupgen shot and it really does make every bone hurt - take care of yourself.  Rest when you need to.

    My MO was very happy with how I have responded to the chemo and how it has really kicked the tumours butt and is less than half the size to what it was... so tomorrow's treatment should zap it even more.  And just think this time in 3 weeks I wont be sitting here thinking "oh crap off I have to go and i'll feel bad for weeks again".  I wont have to go back.. instead I will have a glass of wine (first one since chemo) to celebrate. 

    To all newbies just starting... the end happens and it feels bloody marvellousSmile

    Hugs to all xxx

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  • Titan
    Titan Member Posts: 2,956
    edited June 2012

    Riley..you are in Indiana?  We are neighbors!  I'm in Ohio...and it is unbearably hot here also..I "dislike" it...a day is Ok..but it has been 90 here for about 5 or 6 days and enough already..

    Jazzy..wow..10 hour work day and chemo...that's alot...take care of yourself ok?    I guess insurance won't write us off for chemo but maybe it is time.  I remember asking about it and you have to take the time off all at once instead of a day or two at a time...soo..those of us that have to work do it...or use sick leave or vacation...kinda sucks really..I remember asking the onc about it and he looked at me like I was nuts...so..I worked....

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited June 2012

    It's hotter in the MW & NE than it is here in sunny SW Florida! My family lives outside of Chicago and they are ready to go north to get away from the heat! Lot's of water!

    As for 10 hour days, I'm convinced that part of my lifestyle is what got me here sooooo, I am working fro home for at least 8 weeks and work when I can and rest when I need to. I am blessed to have a job that allows me to work from home. The tough part is that I used to travel 75 percent of the time and now my husband has to get used to me being home 24/7. Poor hubby :-)

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  • rachelvk
    rachelvk Member Posts: 1,411
    edited June 2012

    Jazzyj - Good for you for working when you can. But I second the suggestions that you be prepared to ramp it down as you go on. While not nearly as bad as they could have been, the fatigue really blindsided me because it was unlike anything I'd ever known. Not exhaustion, or feeling tired, but suddenly having your body simply say, "No, I don't want to stand up now," or "Um, there was no need to walk to the printer at your pre-chemo pace, now was there?" Be good to yourself. Good luck!

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  • OBXK
    OBXK Member Posts: 791
    edited June 2012

    Jazzy - so glad you checked in! I agree with Taz - the only things you can do to help your body recover is to rest and eat well.



    Taz - I hope your treatment goes well! When I went for my last treatment, I couldn't have it. Man , it was like Christmas had come early!



    DorMac - Woo Hoo !



    Annie - glad you are feeling better!



    ---

    Today was my anniversary and my husband surprised me with a beautiful necklace and earrings. We have never celebrated our anniversary (we had a house and a kid before we were married - only did it for the parental money :O) So I was truly surprised. I on the other hand, signed him up to remove and replace an 88 year old neighbor's window A/C. Everything went wrong and it must have been 90 degrees in there. He gave me the gift after we finished - that's how I know he loves me!



    Happy Friday!

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  • kellycbk
    kellycbk Member Posts: 31
    edited June 2012

    Congrats to all of you who are finishing up chemo!!!  I know when I finished I kind of went through withdrawls-not running to treatment everyweek and the bloodwork prior -wasn't sure I was really finished and wanted to know it was well and truly gone!!! Remember to take care of yourselves!!!

    For all you newbies I hope you are managing without too many SE. Mine set in right away and I was so overwhelmed as to what to do. My body made it clear right away it did not like the intrusion. Hang tough and take the meds until  you find one that helps- even a little.

    Thanks for the laughs - I look forward to reading even though I rarely post.

    Kelly

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    Jazzy and Tazzy - now I feel bad. Did we forget to mention the combo that some onc's have been recommending to deal with Neulasta pain. It's a 24 hr Claritan, 1 Zantac and I added 2 Aleve. I took it for 3 days (the day before Neulasta, the day of, and the day after. Some people took it the day of and the 2 days after) There is no provable research of why it works, but many people have sworn by it. I never had any bone pain (and I'm old and full of aches and pains)


    Tazzy - all are wonderful choices for the nurseys, esp the hand lotion!


    Titan, I think your onc was the one who was nuts.



    Well said Rachel. You're right it's not "I'm tired fatigue". It's I better get horizontal before I drop fatigue.



    Happy Anniversary OBXK! I'm glad you had such a nice surprise and thank you for being so kind to your elderly neighbor.

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Just remember you are the most important person through all of this - take care.   Cos that fatigue when it hits Rachel and kathyrnn are right... its like nothing you have had.   Just look after yourself.   It is great you have that chance to work from home jazzy - that's a great help and you can then rest when you need to. Make sure you do.

    OBXK - happy anniversary - you deserve some really good karma back at you for looking after your neighbour.  And lovely of the DH to get you that surprise gift. 

    kathy - I am happy you like the pressies for the nursey's... I will take a pic and try and download.

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  • riley702
    riley702 Member Posts: 1,600
    edited June 2012

    Yep, we're not far from each other at all, Titan! And both miserably hot and dry. And it's just June.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    Good Evening Ladies.  Hope you are having a fun filled, stress free day.

    Now if one of you mention your hot weather one more time I am going to scream cause its freaking cold here.  Just been round my daughters and its not far enough away for the car to warm up, brrrrr.

    Jazzyi - I work from home as well.  I start at 7.30am until 5pm and also work in the evenings if there is a lot of work.  So I know just where you are coming from.  No wonder we get tired.  BUT tomorrow is my lie in day until 10am or even a bit later day.  Really looking forward to that.     

    Karen - you had a kid before you were married - how scandulous lol.  So you have a wonderful fellar as well buying you that beautiful present.  Lucky girl and he helped out a neighbour. What a kind man I will be meeting. He sure does love you even in 90° of heat. Mind you it was probably heat that grew that baby in the first place!! Happy anniversary to you and your old fellar.   

    Kellycbk - I would just love to know what the withdrawal of finishing treatment is like. I can hardly wait - so over it now and just want it done.  Five more to go but I'm not sure I will make it what with my hands and unable to type properly.          

    Tazzy - being a typist I can't stand it. Regardles of the present you brought its Nurses. Not nursey's.

    Wow treatment over with.  Go on, indulge me what did it feel like?  I get a month off after chemo before rads and I am just longing for that month. Congratulations for going all the way with it.  You deserve something really special now from your fellar.

    Where is Heather, Inmate, LuvRVing, Christina,  Minxie, Clowngirl.  Your letting the side down ladies we need to hear from you and know that all is ok.   Spose Heather is working, Inmates skiing, LuvRVing has gone back to Paris, Minxie is living it up somewhere and Clowngirl is at the circus. We miss you all.

    Titan - good luck tomorrow.  I will be thigh clapping for you all day.  Remember to hydrate.  Don't look round to see where the others are just keep rattling those dags girl. You can do this, you will do this, we know you will win just look how you have done with chemo.  Sending you a warm hug but you probably won't need it with your heat.  We are all so bloody proud of you.     

    Well ladies on my home front. The old fellar has decided he is going to buy the cafe that is for sale at our local airport. Its not a big airport but a good few planes fly in during the day and the cafe is quite busy.  He is looking up prices for all the things he will need and even talked my oldest girl Cindy to go and work for him.    The thing is it will be long hours, mind you we seem to be used to that, but what I am really concerned about is who will cook my dinner.  I could starve and fade away to nothing and if I end up eating my cooking that fade away could happen very quickly.  Oh well I will see how he goes.    

    Have a good day in the sun ladies and think of those frozen little soles across the sea from you. Annie    

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited June 2012

    Happy anniversary OBXX?!



    I will try the Neulasta combo, thanks for the advise Kathryn. The most painful area throughout the night was my shoulders and neck. Everywhere else aches, but my neck and shoulders are much more extreme. Since these are not long bones, should I be worried? Us newbies are still trying to figure it out... So appreciate the coaching and support.

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  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2012

    Happy Anniversary OBXK!!!!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2012

    OK, I'm here, I'm here!!!  I had my grandkids here on Wednesday and my granddaughter spent the night plus we took her to Chuck E Cheese, so I've been busy with life!  And it's hot here, I've been spending my time floating in the lake, reading the Fifty Shades of Grey trilogy.  Oohh, you really must ...  This might be a cure for anyone's faltering libido...LOL!  Someone said there is going to be a baby boom next year because of these books, and I don't doubt that's the truth!  These books are the most erotic I've ever read.

    My Xeloda treatment is going well - saw the MO on Wednesday and had labwork which showed no problems so far.  The tech took blood from my hand just below my index finger and made a big hematoma, though.  She won't be jabbing me there again.  How the heck can a tiny butterfly needle do that???  It's hard because my veins just suck - they are tiny and shallow.  At least she got blood on the first try.

    Yes, yes to the Claritin!  My Dana Farber MO is now suggesting it to all her patients!  Yeah, they really don't know why it works, but it sure does the trick.  I took it the day of my Neulasta shot, and then for 4 more days.  You can buy the generic stuff - it works just fine.  Don't get the "D" version - you don't need the decongestant.

    Now, now CS!  Just remember that next December when we're all freezing our arses, you'll be cooking out on the barby!!!

    I hope everyone has a lovely weekend, free of side effects or whatever else gets in the way of enjoying life!

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited June 2012

    Thought about you often this week, Mags. Hopefully you had a much better closure to the week than you opened it with!

    Question: What is a foobie?

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Oh! CS  how I laughed when I read your post about my very obvious mis-spelling of Nurses.... I was saying 'nursey' referring to the more rotund martronly (sorry all nurses out there... I know you are not really like that) type of nurses that used to guard our hospital wards...like the nursey Hattie Jacques used to play (old 60's English tv show/film).   

     Jazzy... I have been reading on these boards that Claritin helps the Nuelsta pains... maybe wanna ask your MO.  OMG!   I just read Michelle's post... and it was only 2 posts ago that I read that about Claritin.   Nice to know that chemo brain is awake and working well.. ha ha ha Embarassed

    Foobies.... dont you just love that expression.   I had to ask too Jazz - they are our new false boobs Laughing

    Well my dexys kicked in good... got about 4 hours sleep which is good - so whilst laying awake I rebuilt my house I am in and how different I would've done things... DH is now quaking that I may actually want to take a 2nd mortgage out and do it. 

    I am off to last treatment in 3 hours (9am pacific ST Friday - are you already in Saturday CS?).   Go for my D-care trial drug first then the last and final chemo.   I will for sure let you know it feels... it feels pretty good now.   And yeah I do deserve something really nice from the old fellar.  Sure he wont let me down.

    Whatever you are doing today/tonight enjoy as much as you can.

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  • Hope60
    Hope60 Member Posts: 223
    edited June 2012

    Sorry this is a little late, but thanks to all who supported me through the dreaded mammogram earlier this week.  I took a mini vacation from BC (2 days) but I'm back to the board again!

    OBXK - happy anniversary!

    Congrats to those who are finishing chemo....hugs to those who are dealing with side effects.....and a good weekend to all!

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  • borntosurvive
    borntosurvive Member Posts: 213
    edited June 2012

    YEAH to everyone finishing up chemo and Happy HAPPY anniversary OBXK!!!

     I was talking to a "friend" (use that word losely) yesterday and she was asking about TN cancer.  So I was telling her that hormones don't feed my cancer and that I can't take anything like the hormone people can.  She said, "So you're terminal?!".  My eyes just filled with tears and I said, "Um.....NO!!".  I tried to explain that LOTS of women with TN cancer live forever  but yes my risk of recurrence is higher then those who aren't TN.  I quickly hung up and burst into tears!!!!  Then I sat for a few hours just feeling crappy and realized that I am a ticking time bomb.  I HATE how one person can ruin my whole day.  And I know it's my fault for letting her but still.  I hate this whole TN and cancer thing and just wish that at 34 years old I didn't have this lurking feeling that I may not be here to see my boys graduate from GRADE school let alone be at their weddings etc.  UGH!!!  Just feeling like crap today.  Sorry for the rant ladies but I know you understand.......

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  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Oh! bornto.... that is just too awful.   Glad you used the word 'friend' loosely.   People and their bloody comments.  Thats so insensitve.  Do they realise at all what they are saying... I think not and wish they would think before they put their foot in mouth Foot in mouth  All of us with cancer have a higher risk of recurrance... did you actually know that TN's after 3 years (maybe 5) if the cancer hasn't returned in that time and for most of us it wont... we have a better survival rate after that time than hormone receptive cancers.   So tell her to stick that in her pipe and smoke it.... !   Of course you will see your sons graduate, get married, buy a home and make you a granny.  

    You're entitled to fill crappy and if I were you next time if she phones tell her that you do not want to hear any negativity and if that is all she can offer not to call again... but then that is what I would do.

    You have your life in front of you bornto and dont forget it.

    Hang in there honey and get those emotions out.  Go and do something you enjoy.

    xxxx

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited June 2012

    Borntosurvive- I feel your pain. ((((HUGS))))

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited June 2012

    I'm so sorry Borntosurvive. Some people just suck--there's no other way I can think to put it. Like Fighter said, I feel your pain, too. I was diagnosed last year at age 34 and I know how that feels.

    Hang in there. The bad days are to be expected, but it's especially frustrating when they're brought on by someone else--as if our own imaginations didn't give us enough to work with.

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    Hi to everyone, just a quick note because I'm late getting running to do errands and I'm sneaking off to the casino with a friend tonight.



    Borntosurvive - your name says it all. Don't let people like your friend shake you, it's called "foot in mouth up to knee syndrome", and hopefully came from a place of concern but ignorance of the disease. My best friend did the same exact thing, except she was sobbing as she asked me the question. It was her fear for me that made her ask. More woman survive this than don't so the odds are in your favor. ((((hug))))



    LuvRV - now I know we're at two different places, lol. My MO looked at me like I was nuts when I told her what I had done and that it worked. She started speak, and by the look on her face I was about to get a pretty good lecture, when the research nurse piped up with, "they don't know why it works but a lot of oncologists are now recommending it". No lecture was given, there's nothing more a doctor hates than finding out 2 nurses know something they don't! (didn't ask permission. Had already been taking Claritan during Taxol, and am on Zantac). Went with the theory "Tis easier to beg forgiveness, than to be granted permission"

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  • KSteve
    KSteve Member Posts: 486
    edited June 2012

    Borntosurvive - After my last appointment with my ONC, he said that the two year mark is a good sign for TN's.  In his words, I should pop a bottle of champagne at that point!  Now we all know there are no "rules" that breast cancer follows, that's for sure.  There are so many beautiful women on this site alone that have had issues after that time.  BUT I'm choosing to live my life focusing on my future.  I can honestly say that I have finally reached a point where BC doesn't consume my thoughts.  I'm going to the gym again, have lots of fun summer plans, and have a road trip planned with my DH this September.  It's our "do over" trip because I was diagnosed two weeks before we had a nice trip planned in September 2010.  Since that time I have seen my son graduate from high school, visited my daughter in Italy while she was studying abroad last semester, and many other wonderful things!  Life is good!  :)

    Kathy

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  • OBXK
    OBXK Member Posts: 791
    edited June 2012

    Annie - at cafe sounds like fun! Maybe he'll bring you the leftovers :) From my experience of ending treatment, I felt at six and sevens. Like I was in the ocean in a life ring that had it's tether cut. You go from constant care - to see you in three months. After my first 3 month check up, I felt like a much stronger swimmer.



    Bornto: a lady I was in chemo with, was in a fatal car accident. It helped to remind me, I could go any day from a whole host of options. Sorry you have to be handed that reminder, so young. I hope you are feeling better soon.

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  • kellycbk
    kellycbk Member Posts: 31
    edited June 2012

    OBXK --I agree I did feel like I had been cut loose and didn't know what to do-- and yes after my first 3 mo. check up I did feel much stronger!!!!

    have a great day ladies!

    Kelly

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2012

    Kathy - if you like, PM me...we should get together and compare notes, for sure!  I will say that my local MO is part of the New Hampshire Oncology practice, who then has a contract with Dana Farber.  Maybe that's why things are a little different.  My DH didn't care for the Boston DF oncologist, personality-wise, but she is brilliant and directs my treatment.  My local MO has a better bedside manner.

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  • bak94
    bak94 Member Posts: 1,846
    edited June 2012

    Annie-don't you miss me too?;)

    LuvRVing- I always read your name as luvring!

    Inmate-I miss you!

    Lovelyface-so glad you had benign results, whooo hoooo can you hear me screaming?

    Titan-Way to go! Running in the heat, you go you track star!

    Who was it that said it was cold? Annie? Well, it is rainy and cold here in the Pacific Northwest too!

    Hi to everyone I haven't mentioned!

    I went to my 3 month surgeon check up and left with a drain, yes one of those nasty drains! This is 6 MONTHS after my bmx! I guess I still have a seroma. I have to work with the stupid thing tomorrow!

    I finished my quarter of school, got a "B" in geology, which I really thought I was going to fail that class! It was hard for me. Taking the summer off from school. Us old students need a break once in awhile.

    I have started working out and doing weight watchers, hoping to get a bit stronger before my hysterectomy. I have been taking aromasin, makes me feel like I am not a triple neg, but really, at 3% er pos I still am, right? You all might kick me off this thread! My se's seem to have gotten a bit better from the ai, still get really stiff in the mornings. My doc wants me to get in a metformin trial, at first he was just going to prescribe it, now he wants the trial. We'll see on July 2.

    Have a great Friday!!!!!

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  • minxie
    minxie Member Posts: 484
    edited June 2012

    Born2Survive - yes people do ask the wrong questions. Sometimes them just not knowing the right terminology can push me over the edge! I was asked by my own husband if my local recurrence made me Stage IV now. Good Lord.

    Ladies - who's on anti-hormonals/aromatase inhibitors for really low %s of estrogen? Mine came back 1% positive this time, so that's what they're recommending - seems like such a tiny number. But if it makes a difference I'll try it! How bad have the side effects been?

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited June 2012
    Bak94 - might be appropriate if I were 20 years younger reading these Fifty Shades books Surprised
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  • Lovelyface
    Lovelyface Member Posts: 674
    edited June 2012

    borntosurvive - People are so ignorant about BC, especially women that I am just dumbfounded at times.  At our meeting yesterday, the Chairman, poor guy I do like him alot, suffers from kidney transplant SE's (he got a kidney from his wife, which was a 100% match), asked me in front of others whether I was taking any immuno suppresants (or something to that effect?).  I was shocked.  I think many people think of us as being forever sick, taking a million drugs.  I said no...... before I could say more, my own boss came closeby, not sure how the conversation veered towards my boss, when I (big mouth) said, well, J and I both are over and not taking anything.  The Chairman looked shocked, saying you mean J had cancer as well?  I said yes, he had melanoma 7 years ago, and is recovered now.  There were some very awkward moments.  Anyway, my boss and another guy at work who both have had cancer, melanoma and prostrate, have said things to me, like, well, mine was nothing like yours, I think I got it just because of a sunburn.  The other one said to me, it really was nothing, I think it was just the environment in my case. Well, what the hell was in my case?  Just because it was TN, do they think that it is the most serious thing out there? No way, I don't think so.  Actually, to tell you the truth ladies, I think having TN is better than having a hormone positive BC.  My Onc. said that if it does not recur up to 5 years, he can tell me on my face that I am "cured".  Many kisses to someone who said her doc said to celebrate after 2 years.  I will find out for sure whether some of us can start using the word "cured". 

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  • JAN69
    JAN69 Member Posts: 947
    edited June 2012

    Born to survive--I'm sure we have all had at least one insensitive clod say something so totally inappropriate that the sting lingers long and deep.  So sorry you've met yours so soon.  My dear friends would come and sit by my bed and tell me about all the people they know who have died from cancer!  They came to visit and comfort me, and BAM!  hit me with that.  I was never ready with a quick come-back, which I still regret.  One recently asked if I was in hospice care. 

     My best thing today was having lunch with 16 friends from my school (where I taught until I retired).  I wore my fake boob today and it kept showing up at the top of my blouse.  Must have been quite a sight.  At least nobody said anything.

    To all of you who bare your souls here, and all those who help them:  Bless You!  May the side effects and worries take the weekend off. Jan

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