Calling all TNs

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited March 2013

    Debra - glad you got good news!!!

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited March 2013

    Finally got caught back up.



    Titan - thanks for the uplifting message, made my heart lighter today.



    Phgrahm - congrats on the clear scans



    Placid -thanks for that link. I've saved for when I have more info.



    Debra - congrats on the good results and I'm glad you have a doctor who listens.



    Lady Miz - Please forgive me for chuckling. PET scans? That's another "not our standard of care" at DF. I urge you to call your primary, if they don't address your neurological symptoms. He can probably rush the process to get you seen by a neurologist. Once neuro hears your symptoms and diagnosis, your butt will fly into the MRI.



    Luv - you can always make me smile. LOVE the picture!!!!

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    Thank you Luv!  And I want to say you all are so supportive.  I can't even keep up with all the daily postings, and yet you all seem to be right there listening.  It's nice to have a place to come to when I have a question, (or an answer).  :)

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  • 5thSib
    5thSib Member Posts: 141
    edited March 2013

    Titan -- congrats on being 4 years out. You are such an inspiration to us all. I'm so glad you are still posting here, helping us all out.

    Yea, Phyllis -- I know that gives you a wonderful feeling.

    Lady_Miz -- Welcome. What you are going through sounds really scary and I don't understand the wait either. I hope you get your answers really soon. I would definitely take the response you got from John Hopkins to him and if he seems offended, then you should look for someone else.

    Argynnis -- Do a search on this site and the internet for the Z0011 trials and you should find articles from the 2011 San Antonio Breat Cancer Smposiusm which states that removal of additional nodes is not usually necessary.  When I had my lumpectomy in October, they removed the sentinel node and had it checked while I was still in surgery. It came back negative, so the doctor did not take any more nodes. A week later the path report came back that there was a 5mm metastisis deeper in the node.  The surgeon said he needed to go back in and remove the remaining nodes. I really was not ready for another surgery. The hospital nurse advocate was there when he told me and she told me she would talk to my RO about it. My RO had atteneded the symposium where this study was presented and she called my surgeon and told him removal of the additional nodes were not necessary since chemo and rads would take care of anything left. She brought my case up to the local tumor board and they all agreed that additional surgery would not be necessary.

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  • Lady_Miz
    Lady_Miz Member Posts: 62
    edited March 2013

    5thSib ~



    Thank you for the welcome! I'm starting to get pretty ticked and I will not stop until I get some answers, be they positive or negative. No one, and I mean no one can understand the hesitation to at least biopsy these nodes! Add on top the neuro SX I'm having and it's absolutely foolish!



    Someone at work in whom I confided about this asked me this question - "Would you accept these delays if it were one of your sons we were talking about?" - and that was the turning point!

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  • Lady_Miz
    Lady_Miz Member Posts: 62
    edited March 2013

    kathyrnn ~



    You have no idea what I had to do to even get the PETs ordered. One way or another, I will be on the path to answers next week!

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  • Keke713
    Keke713 Member Posts: 91
    edited March 2013

    Hey girls! I had my power port placed today...I'm not really sure how I feel about it yet.. ..to start off I was shocked that they used general anesthesia and the tube down my throat...everything I read, said they sedate you but your still awake and jut not feeling anything..I HATE waking up from the anesthesia! And I'm not going to say It hurts right now, but I'm def sore...which I guess isn't a bad thing bc it took the soreness off of my chest! Haha so I guess it wasn't bad... The worst part was being put under and the sore throat ill have for a few days! But im still alive and kicking, so i guess i shouldn't complain bc theres woman losing their lives to Brest cancer right now! Im just lucky to be alive and given the chance to get rid of this cancer bullshit! So yup, ports in and im ready to start chemo monday and push till the end!

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  • netty46
    netty46 Member Posts: 296
    edited March 2013

    I had recurrence just had rads again second time same breast.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    Netty that is amazing. I was told you couldn't have rads again on the same breast. How did that happen.  

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  • OBXK
    OBXK Member Posts: 791
    edited March 2013

    Keke - I had to have general with my first port - because I kept try to leave the table under sedation. They thought I'd be less stressed getting it out -tried local, I tried to assist with the surgery ;) I hope you have a speedy recovery.

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    OBXK, oh my goodness, that's hilarious!  They told me I had twilight sedation.  Because I'm always so nervous and shaking beforehand, they always start my sedation while I'm waiting to go back, so I've been completely under with no memory of anything.  Even after I get home, I'm so groggy that I will go straight to sleep.  I will have a pre-arranged food order placed with my DH, he will wake me up, I'll have my very special meal that I was looking forward to, then I'll go back to sleep. A few hours later I'll wake up and ask him "when are you going to get the food?"  LOL  Oh, and I also like to call my doctor's offices, while I'm heavily sedated and tell them all how much I love them.  Then I realize what I've done and I call back a few hours later (still groggy) to apologize for the previous 'drunk' phone call.  :)

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  • Keke713
    Keke713 Member Posts: 91
    edited March 2013

    Obxk!!! Hahaha that seriously made me laugh out loud!! I wish I had some awesome story as to why they keep wanting to put me to sleep...but, I don't! Haha Nurse said its just my doctors way if doing it! Ugh I'd rather be awake and go without the horrible anesthesia wake up..oh and knowing they shove breathing tubes down my throat while I'm sleeping..but hey, she's the doctor so if that's how she does it, that's what I go with...thank god I only have one more surgery and that will be a while down the road to have my expanders out and implants in!

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  • OBXK
    OBXK Member Posts: 791
    edited March 2013

    Keke- that is too funny!

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  • jenjenl
    jenjenl Member Posts: 948
    edited March 2013

    Debra that's a riot!

    Ladies - I need some advise...I am on tx #5 of 6 and my feet hurt so bad it's getting hard for me to walk.  I'm 33 and chasing after 2 kids all day so I try to push through it but this morning they just hurt.  I am assuming it's bc of the chemo but besides meds is there anything i can do to reduce the pain.  It hurts the most at the ball of my feet. 

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  • melissa119
    melissa119 Member Posts: 172
    edited March 2013

    Jenjenl... Is it a pain or numbness and tingling like. Cause I know the taxotere can cause neuropathy which is tingling and numbness. My mo told me to take b6 to try to prevent or minimize the neuropathy and it seemed to help but I took it throughout the treatment. See what your mo says. Maybe try to soak them in Epsom salt or get a foot massage :-). I always had my husband do that when they started hurting but for me I didn't get it if I did til the end of the day. Hope you get some relief.

    Melissa

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  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    Keke..will be thinking of you tomorrow as you start chemo!



    Jenjen..My feet hurt bad when I was on Taxol. I soaked them in lavender Epsom salts at night...wore tennis shoes all the time and had DH rub them! They are so much better now! Just have numb toes!



    Is it normal to be 12 weeks Post chemo and still have pains here and there? Same pains I had right after taxol!

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  • Keke713
    Keke713 Member Posts: 91
    edited March 2013

    Thank you so much!! I'm soooo nervous!! I actually am wondering how they use my port since its all covered in stari strips...do they poke through it?? Anyone know?

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  • adagio
    adagio Member Posts: 982
    edited March 2013

    jenjen - talk to your oncologist. He/she may be willing to reduce the dose for you to help prevent the pain. That's what mine did - but I was paranoid about neuropathy in the feet so when I had tingling I suggested that I was going to quit because of quality of life and she reduced my dose to 75%. It made a huge difference. Then again you may not feel comfortable with a reduced dose - I was totally fine with it. Living with sore feet is no fun.

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  • QueenKong
    QueenKong Member Posts: 154
    edited March 2013

    Keke, you are going to be glad you have the port. THey poke in/access from the top. I also found the numbing creme they give you doesn't make that much of a difference. I had some complications during the chemo and was so happy to have that port in. It'll save your veins being poked over and over. It's a little pinch when they access it. Some nurses are much better than others. I'm reluctant to have mine out and am going to keep it in until a little while after I am done with rads. YOu can keep them for a long time. Some people do and others want them out right away. I was awake when they put mine in. I wonder why they knocked you out for that seems overkill and that sick feeling afterward is no fun. 

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  • QueenKong
    QueenKong Member Posts: 154
    edited March 2013

    oh and does "Twilight Sedation" mean you are sparkly vampire? ;)

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    Keke I was put under anaesthetic when I had my port put in but when they took it out only had a local and didn't feel anything except a little sting with the injection.

    When I went for chemo they gave me an Emla patch to put on an hour beforehand and there was no pain at all just a little thud when the needle went in but its only a small needle and you shouldn't get any pain.  

    Hope this helps a little bit.

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  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    Like many others I was put under for port installation. Don't know about a tube down my throat though. Don't think so. And deportation was with a local, no big deal. For chemo, I didn't have any numbing cream etc. The nurse just said deep breath and the needle was in. Just a pinprick.

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  • placid44
    placid44 Member Posts: 497
    edited March 2013

    Hopex3,



    Re pains: I am ten weeks PFC and I still have achy legs from taxol. I asked my onc when that might go away and she said "a few months." I also have numbness in my feet, but I am not counting that as pain. I hope that goes away, too.

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited March 2013

    Hi All.

    Reading this certainly brings up memories of our losses of Susie, LJ and Mary last March. I have been trying to give myself a break from this board just to see if my mind would settle a little but the reality is this is such a supportive, tight loving group I am back to say hello to all.

    Titan congratulations on 4 years out. I remember when it was 3 so that means time does fly in some ways.

    To all the newbies, I found this my lifeline during chemo and radiation. I still don't know from when you count NED but my chemo stopped on 9/9/2011 so I guess I am 18 months out and my big goal right now is to eat a healthier diet and lose some weight.

    I have my follow up with the oncologist in May as well as my mammo but I am going to try not to think of it too much.

    Some good news is that I am in exhibitions of my paintings this summer in Poland and in Italy so we are going to be away for 2 1/2 weeks so we can go to one of the openings. I am madly painting away and feeling cheery about it.

    Love to all.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    Hi Painting good to see you posting again.  What a wonderful trip you will have for your paintings.  No wonder you are feeling cheery.  Fantastic news.  

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    To hopefully make you all laugh and forget your treatment and side effects just for a minute

    I don't know if anyone read this today in the paper - but I loved it and had to share!!

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  • OBXK
    OBXK Member Posts: 791
    edited March 2013

    Painting - Woo Hoo on the exhibits! How exciting.



    Annie - good one & thanks for the card!





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  • washingtonwoman
    washingtonwoman Member Posts: 19
    edited March 2013

    Jenjenl, my oncologist & research RN suggested that I take L-glutamine for peripheral neuropathy. You might want to ask your dr to see if that might help you.



    Anyone: is there a place on this site that I can learn all the abbreviations that are being used?

    Thank You

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  • Babs37
    Babs37 Member Posts: 455
    edited March 2013

    washingtonwoman-

    http://community.breastcancer.org/forum/131/topic/773727?page=1#idx_1

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  • DorMac
    DorMac Member Posts: 155
    edited March 2013

    Finished chemo on June 19th, 2012 - that's the date I will be using for my "cancerversary". Just had 2nd f/u with oncologist and everything is still ok. Whew! See him again in 4 months. Had a mammo in November and will be arranging to have an MRI (which I will pay for myself) 6 months after (i.e. end of May) as I don't trust mammos to find TNBC early enough.

    Got a lot of nice compliments on my new look - full head of white, curly hair - used to be a dyed brunette with extremely straight hair. I've heard the curls might not stay past a year or so.

    Welcome to all the newbies - sorry you have to be here but there is so much helpful information and support here, it makes the journey so much more tolerable. Good luck and hoping for minimal SE's.

    To the "veteran" members - Hope everything is going well and you're living life to the fullest!

    Doreen

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