Calling all TNs

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

    Oh..Marianne...please don't be upset...I dunno...on this thread we deal with reality and the reality is that sometimes some of us don't make it....it is very, very hard to accept...its the reality of breast cancer..we can't go around saying everything will be ok because it just may not be ok...some of us have been on here for along time and have seen our friends not make it..it is hard...we have also seen our friends make it and move on to having their lives back again...we are all here to support each other whatever the outcome...

    It is taken me a very long time to accept this...like maybe just now..the thing is though we do accept the reality..we are here for each other..in the good and the bad.

    And welcome to this thread girl!  We will be here for you..plan on laughing alot...I know I do!

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  • moe0279
    moe0279 Member Posts: 200
    edited September 2012

    Hi all, i haven't been here for a while and have a concern and wonder if anyone else has gone thru this?  In the last month i have had 2 rapid heart beats...the first one was short, but tonights was at least a minute.  Could this be from chemo? or just anxiety?  I had avastin, ac, and radiation on the left side...would the side effects happened quicker...i completed chemo may 2011 and rads oct. 2011...going to call doctor in the am, but wanted imput from all you ladies...thanks melissa

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  • lisadi1963
    lisadi1963 Member Posts: 24
    edited September 2012

    Hi everyone! Can you all tell me how you determine your cancerversary? Do you go off of when you finish all your treatments or when they told you that you had cancer?



    Lisa

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  • moe0279
    moe0279 Member Posts: 200
    edited September 2012

    When I finished treatments, surgery, then rads, my doctors said i was cancer free!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2012

    Lisa, I count from the day I was told I had this demon. I am almost 1 yr out-- fought like hell and am here to say I am NED!!

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  • Yodie
    Yodie Member Posts: 13
    edited September 2012

    Rachel--keep us updated and know you are in our thoughts and prayers.



    Lisadi--Ive been wondering same thing!



    Moe--Ive had heart palpations too and my surgeon did ECG. Some chemo meds can impact the heart. I would ask your doc for cardiac testing, if it would help put your mind at ease.



    Can anyone advise on dis/advantages of MRI versus CT scan versus PET scan and bone scan? And, what protocol are your oncologists using, as far as when you have imaging studies done again, after chemo, surgery, rad, etc? I thought I read somewhere that TN's should have imaging studies done more often than other BC.



    Also--I'm told tomographic imaging, rather than mammograms are best for dense breast tissue gals. Obviously, if you've had DMX you won't get mammograms anymore, however, I thought I'd throw that out there for those that still need mammograms.



    For those of you that have daughters, how have they/you found support, when they fear losing their mother? My youngest (19yo) wound up hospitalized with severe depression, afraid I was going to leave her. My oldest (22) told me she didn't want to be around anymore if I died. I raised them by myself for a long time and we are a strong triad. Is there a book or something I can have them read? Or, have your children gone to group thx? I'm more worried about them than me, although they seem to be doing much better since my hair is growing back, treatments and surgeries are over. However, I know it's in the back of their minds. I want us to go on a trip, but need to pay off some medical bills. Advice?



    Thinking of you all!

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  • OBXK
    OBXK Member Posts: 791
    edited September 2012

    Lory - I can't wait to raise a glass to your great news!



    Rachel - maybe BF can sell some of his inventory on Amazon?



    I had a good 6 month check in with both my BS and Ortho today.



    Annie - I hope your hands are getting better. Are you back to typing?



    Hugs all around...

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  • Sjayne2u
    Sjayne2u Member Posts: 15
    edited September 2012

    I am so very new to this BC journey and am finding it very frustrating. I had my biopsy done on 8/10 and got the results on 8/14. MRI is done and now I'm being told I have to wait for genetic testing before any treament. When I went for a second opinion I was told that not only did I not need to wait, but could have participated in a clinical trial if only I got started a few days sooner. Any thoughts on chemo prior to surgery vs surgery then chemo? Two docs with different views both saying there view is best for triple neg. I am only 36 and raising two neices as a single parent. I have to do what gives the best chance to be here for them.

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited September 2012

    Hi Jan the  facebook group is to open our friendship above and beyond the BC.  It has been made a secret group so that people cannot relate anyone back to the forum.  As you know the forums are open for anyone to read.

    All are welcome to join the FB group if they would like to.  PM me if you want to join.

    Love

    B. 

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

    Lisa--everyone counts differntly...I from my date of DX

    yodie--my 19 yr old is also riddled with anxiety.  For me to help her I try my best to never say negative things about the cancer, treatment or my own self image after the bmx.  I stay focused and positive for her sake.  If you can do it may I suggest some counseling for the three of you to go to together.  Make sure your daughters know that you want them to continue on even if something were to take your life now.  None of us knows what tomorrow may bring so always grab life by the horns and hold on tight because it can be such a bumpy ride.  {{{HUGS}}} to you and your lovely daughters.

    Maggie

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  • Luah
    Luah Member Posts: 1,541
    edited September 2012

    Sjayne: Sorry you had to join us here, but you will find great support from all the ladies here. First let me say, that the first few weeks after diagnosis are the worst! The anxiety, the not-knowing, the wait for treatment can be unbearable. Most of us here will attest that once a treatment plan is in place, you will feel a whole lot better. Second, it is always good to get a second opinion... and weigh your options... even though TN is an aggressive form of BC and you don't want to wait too long. Did you talk with a breast surgeon and/or MO? Did you feel better with one MO over the other? You will be an MO's patient for several years (even after treatment is concluded) so it's important to feel confident and comfortable with that person. 

    As for surgery versus chemo first, there are advantages to both. With surgery, the cancer is removed right away and chemo is used to mop up any stray cancer cells that may be floating around. However, with chemo first, you and the doc can actually assess whether or not the chemo is working on your tumour (shrinking) and change course if necessary. That's a big positive for TNs like us because chemo is our only systemic weapon and it's important to get it right. Larger tumours can also be successfully shrunk so that less radical surgery can be performed. You will find ladies here who have done chemo first (now much more common) and others who did surgery first. If you are waiting for genetic test results, it may make sense to start chemo and make your surgical decision later. For example if you test positive, you could decide then whether or not you want prophylactic surgery to reduce the odds of another cancer.  Docs and genetics counsellors can advise you at the time.

    Finally, treatment decisions are very personal, and you need to act with your head and your heart on the basis of the information your docs supply you with. 

    Hope that helps. And good luck. We're all here for you.   

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  • christina1961
    christina1961 Member Posts: 736
    edited September 2012

    Sjayne,

    There are peer reviewed studies comparing the neoadjuvant (presurgery) chemo and adjuvant (post surgery) chemo with no difference in outcomes. I opted to go with the neoadjuvant while waiting for my genetic test results.  If you go for the neoadjuvant, you have the benefit of knowing whether or not your tumor responded to the chemo.  They need to monitor the response to the chemo carefully.  Most places do not do scans during the chemo, but I wish I had had scans or at least ultrasounds as we thought mine was shrinking because it got much,much softer, but I ended up with almost the same size tumor at surgery as I had in the beginning.  I still had some response to chemo though. Because of my limited response, I opted to do another round of a different chemo following surgery for extra insurance.  Making all the treatment decisions in such rapid fashion is so incredibly stressful; I remember my frustration well.  Wishing you all the best, C.

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  • christina1961
    christina1961 Member Posts: 736
    edited September 2012

    Fighter, Congratulations!!!!  Laughing

    Jan, I don't quilt, but I make basic things like cat beds and could probably handle making a pillow.  My sister is an artist and could probably make me a pattern for a turtle applique that I could hand sew.  I'll check out their website - I am becoming a fabric collector myself - all fleecy stuff for my cat beds - and I already have too many books!

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited September 2012

    Titan your words are so on point. We need a LIKE button!!!

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited September 2012

    Luv-I just love the pedi pix!!!, as the teeny boppers say ~COOL....

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

    Hi Sjayne - sorry you had to join us, but an awesome bunch of ladies where you can share anything and everything with no judgement.   I had neoadjuv chemo (tumour 8+cm) and its shrunk that bugger to almost nothing (1.8cm) so for me it worked.    Also chemo made my cancer ER positive (not sure of %) and will find out when I finish rads (waiting for a start date) if I go on hormone therapy.   If you are given a choice though (I wasn't) it is such a personal decision that only you can make and feel at peace with.  Good luck.

    Hi to everyone else and hope you find your happy somewhere today.

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  • JAN69
    JAN69 Member Posts: 947
    edited September 2012

    Christina - Check out their web site.  The turtle pillow is very specific.  It is cute, but I would rather make quilts.  The Painted Turtle is such a great place for kids and their families that I immediately feel better when I work on quilts for them.  I'd love to hear how it goes for you.

    Luah - What a great summary of care options.  I wish I had known all this before I started tx.

    My heart goes out to you moms with children who worry about losing you.  It must make dealing with this f'n tnbc all together that much harder.  My best wishes to you and your children.

    Wishing you all some joy today.   Jan

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  • DorMac
    DorMac Member Posts: 155
    edited September 2012

    Sjayne - As everyone has already said, treatment choices are personal - do what  YOU are comfortable with and don't regret your decisions. One thing that MAY influence the "chemo before surgery" option is if any of the nodes test positive. In that case, you would probably want to try killing the cancer cells before they have a chance to affect more nodes or other organs.

    Luah - wow, you did a great job with that explanation - keep a copy handy for when this question comes up again!

    Doreen 

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  • inmate4232010
    inmate4232010 Member Posts: 310
    edited September 2012

    Kathy....woot woot.  yeah on 2 years!  

    Marianne........don't worry about letting those words hit you a bit hard.  It sucks that any of us have to entertain the though.  I look at it as an opportunity to "clean" house the way I want it done.  no friends or family pawing over my things.  Hey, nobody's getting anything today, mind you.  But none of us get a pass on dying, or taxes, for that matter.  This is my choice to think about the legacy I leave behind while I can sill think clearly.  For all I know I could ge hit by  a bus tomorrow or eaten by a crazed penguin at the zoo today.  Yes, I get to go to the zoo again wih little Baker man and Mom and sis.  I m one lucky person.   :)

    Things are looking pretty good for the trial.  The skin mets look less angry.  I do not like the SEs from Abraxane!  I am coughing a l lo less.  Still no appetite.  Super headaches.  In lots of pain, that sucks! Loose my breath a lot.  That is the scary part.  I get to Dr K on Monday for a follow up.  Al in all I am very happy ith my deciion.

    Have  onderful day ladies!

     Love to you all!          

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  • JAN69
    JAN69 Member Posts: 947
    edited September 2012

    Inmate - So nice to hear from you.  I've always liked your attitude and the legacy part is pretty much spot on for me.  (old underwear in bottom of drawer, bits of old make-up)  It's wonderful the skin mets look to be clearing up.  But, the SEs must certainly be hard to handle.  Meanwhile, enjoy your day at the zoo with your little Baker man.  As I recall from a picture, he's one cute squeeze.  Sounds like good therapy. Jan

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  • minxie
    minxie Member Posts: 484
    edited September 2012

    Good to hear from you inmate!

    Just got back from plastic surgeon, with some unhappy news :( He wants to wait 6 months to do surgery because of the rads. Then he wants to put in a TE for 4 months before the implant! Argh! So I'm looking at almost another year before this breast done. I so wanted to wrap it up in 2012 and put it behind me. I've been living with this stupid cancer popping up and making trouble in my life for 4 years now. People tell me to look on the bright side, I'm still alive, etc. Yes, I appreciate that, but I am tired of dealing, tired of the pain and fears and tears.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited September 2012

    Surfing the web and I just noticed that my favorite childhood author is facing this beast as well. I wish Judy Blume all the best.

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited September 2012

    Minxie...how frustrating....complain away. It is so hard to wait.

    Inmate....love your attitude. Pouring here...zoo is great though.

    Luah...great explanation

    So all it is my 2 to the 5th power anniversary with my dearest sweet spouse. He is working all day though and I am enjoying the rain and the cats and my hair actually looking like a real hairdo.

    Off to the post office to drop off some packages and then to the art store to pick up a print I had framed and to drop off one silly chicken for framing.

    Tried to put it up but you have to go to this link:

    http://dailypaintersofrhodeisland.blogspot.com/

    2 titles...Sitting Pretty but for those of us on this blog:

    No Sitting Ducks Here!

    Have a super day.

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  • OBXK
    OBXK Member Posts: 791
    edited September 2012

    Inmate - so glad you weren't eaten at the zoo - although I hope to leave in a more dramatic style than FC - how pedestrian!

    I hope the SE's subside - and that you are able to breathe better soon.



    Painting - I love your chicks!



    Minxie - I'm sorry you can't get everything behind you by the new year. How far out of rads are you so far? Maybe by Chinese New Year? We'll all order take out and toast with egg rolls!

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  • JAN69
    JAN69 Member Posts: 947
    edited September 2012

    minxie - So sorry about yet another wait in your life.  Frustration

    Fighter - Not Judy Blume, too!  My daughters loved her books and I love a couple of her adult books.

     Susan -  I absolutely love your art!  When I grow up I want your skills.  Has your style changed since your dx?

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  • belleeast
    belleeast Member Posts: 653
    edited September 2012

    Wooo Hooo,my hair was blowing in the wind today!!!!!!

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

    Hi everyone!

    To the newbies-Just want you to now that I am a 9 year survivor of triple neg stage 2b, brca 1 pos. grade 3. I feel fortunate to have gone that long before I had a new primary in the opposite breast. Now I am one year and five months past my second diagnoses, this time I was stage 3C/4. Fingers crossed that I stay NED! I don't think the worry ever stops completely, but it certainly gets less. This time I don't seem to worry or obscess as much as the first time, but I do still worry and get very anxious before appointments, and scans! I have always suffered from anxiety and panic attacks.

    Tomorrow I go to see the gyn. I am a bit nervous, the doctor is a man, I usually see women for that kind of stuff! He is a gyn oncologist and highly recommended by my mo. We will be talking about having my hysterectomy, and hopefully scheduling it to get it over with. Since I am brca 1 pos the sooner the better, even though I do not feel ready for another surgery!

    Minxie-I get what you mean. I have to wait for reconstruction, probably until after march of 2013. My docs wanted me to wait a full year after rads. So I will have my hysterectomy, then reconstruction, and then I hope I am done with surgeries for awhile. I even consider no reconstruction, but I think I really do want to do it if I can stay healthy.

    Hi Inmate! hope the zoo was fun! My house is a bit like a zoo:)

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited September 2012

    OBXK...thanks

    Jan69....no my painting hasn't changed much. the chicks are jsut a new phase as I am in a Birds of A Feather Exhibition opening Saturday. Also, they sell well at  open studios. I never grew up- I think that is why my work looks the way it does. I did do a few creatures with tons of boobs hanging off them...one was entitled "Boobies for Sale" but I didn't tell many people about my cancer so I made up a story about buying boobs from the medical profession.

    Belleeast...waiting for my hair to blow....it is growing though.

    Bak94...hope you have ativan. You are amazing to me to have done this twice and seem to find a great way to manage. I love your attitude. Hugs and here is hoping and praying all will be NED tomorrow.

    I just caught dinner for our anniversary.....bluefish babies..yes it is 2 to the 5th power number of years we are married-anyoen figure it out yet. Chemo brain gave me pause when my husband made a card with that inside.

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited September 2012

    bak I too went to see a guy gyno onco and was uncomftorable, but I am so glad I did, he is great!  I am debating a hysterectomy cause I have a 4 cm cyst on my left ovary.  We are going to recheck it in 3 months to see if there are any changes.  He strongly believes it is nothing.  I trust him!  

    So happy to hear you are a 9 year survivor and now this go round are ned!  I pray you stay that way too! 

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  • JazzyJ
    JazzyJ Member Posts: 126
    edited September 2012

    Hi Ladies - Someone posted supplements they took for Neuroapathy. I thought they were L-Glutamine and Acytel L-Carnatine. Does this sound right to anyone? I took both for the first time about 11/2 hrs ago and feel wired and a slight tightness in my chest (gas I hope?). Any input?



    Hope this note finds you well.... xoxoxo

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