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Calling all TNs

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Comments

  • Titan
    Titan Member Posts: 1,313
    edited June 2011

    OMG...I just posted on another thread and it was deleted by the Mods..I've never had that happen b-4...guess I will stay here...guess I was out of line.

  • Suze35
    Suze35 Member Posts: 559
    edited June 2011

    You weren't out of line Titan, the OP was. That OP has multiple user IDs, and starts these threads to get a rise out of us. I occasionally bite, I shouldn't, but it just pisses me off that people take advantage of women who are in pain and terrified.

  • MBJ
    MBJ Member Posts: 3,671
    edited June 2011

    Tiffany!!!  Yay for good news!!!!

    Titan:  What did I miss???  Guess you can't say or you will be deleted by the Mods??!!  I am surprised that a couple of my posts weren't deleted but I cannot imagine anything you could say that would cause that to happen. 

    Tracy:  My night nurse was heaven and my day nurse made me feel as if I were a pain in the a#%.  Sorry they were so awful to you.  You should file a complaint.  Really!

  • MBJ
    MBJ Member Posts: 3,671
    edited June 2011

    sukie:  Sounds like you have a great plan in place--I think it's great to see how different hospitals/dr's do things.  I got really lucky with my third consult.  Good luck!.

  • Lynn18
    Lynn18 Member Posts: 284
    edited July 2011

    Tiffany:  Happy to hear your good news!

    Titan:  I have sort of been following that person who you are talking about . . . I don't even think it is a woman with breast cancer.  I saw their blog and it was very disturbing.  

  • HeidiToo
    HeidiToo Member Posts: 965
    edited June 2011

    Saw my onc today. He said I was doing really well but that my joint aches are probably permanent. Well, at least he acknowledged them as legit SEs. Bummer though, as I thought I'd work out of them in time.

    Also did some genetic counseling, though I don't expect it to go anywhere. Apparently they ran out of funds for he TN/BRCA research that would have gotten me tested for free.

  • Suze35
    Suze35 Member Posts: 559
    edited June 2011

    Heidi - glad to hear your visit was uneventful. I feel like I've aged 20 years since chemo, my ankles and knees stiffen up when I sit for even a few minutes. It sucks. Will the genetic testing give you a BRCA result?

  • TiffanyF4
    TiffanyF4 Member Posts: 104
    edited June 2011

    Heidi - my joints in my knees hurts so bad sometimes I have to go up and down my stairs backwards! I know that's weird but it puts less pressure on my knees. I NEVER thought I would be like this at age 36!

  • redgrldj
    redgrldj Member Posts: 2
    edited June 2011

    Hi Everyone.. My original diagnosis was May 2008 I was 38.. Stage 2 grade 3 .. 3 centimeters.. No lymphnodes involvement... 4 x DD ac 4 X DD T..... Nov 2010 it came back in my lungs and a spot on my spine... 6 x carbo gems...... Just finished my chemo about a month ago.. Am getting monthly IV's of Aredia for my bones... Just had my 3 year anniersary as a survivor... I go tomorrow to see what our plan of action is.. After round 3 of the Carbo/gems there was major shrinkage of the cancer.. So I am hopeful...

  • HeidiToo
    HeidiToo Member Posts: 965
    edited June 2011

    Suze, yes, it would give me a BRCA result but I don't expect it to be approved by my insurance. I didn't know the funds had run out when I went to the genetics office today. However, I now have my name on their genetic info database, so I'll be notified if anything pertinent to TNBC comes up in the future.

    I was really hoping my onc would tell me the stiffness would go away after awhile. He knows how impatient I am wrt leading an active lifestyle. I feel much like you do... sitting for even a few minutes makes me stiff, though I do workout of it for the most part. Trouble is, when I get "stuck" in a position it's often through some contortion I have engaged in involving a horse or a sailboat, and it makes it a bit harder to react as quickly to an unexpected event (like a wake from another boat or a horse shying).

  • ssmith37
    ssmith37 Member Posts: 16
    edited June 2011

    redgrldj, I'm so sorry to hear of your recurrence, but so glad to hear you're a 3 year survivor.  If you could, would you please explain the chemo you went through first.  Just had my port placed today, first appointment with oncologist on Monday, and would like to know about chemo for our little TN club!

    Congrats and stay strong!

    Stephanie

  • breckgirl007
    breckgirl007 Member Posts: 1
    edited June 2011

    I was diagnosed in June 2009 with Triple Negative Infiltrating Ductal Carcinoma of my Left breast during my annual Mammogram at age 46. I have a large family history of female cancers including a sister who was diagnosed around the same age years before me, so I have been having annual Mammograms since turing 37.

    Triple Negative is surely a fast moving type that put me with stage 1c,grade 3, type 3 in 1 year. I had a lumpectomy and wonder if I should have just removed the whole breast so maybe I would not be in a state of constantly wondering if they got it all or of reoccurance. I  had four rounds of Adriamiaycin & Cytoxane chemotherapy and 32 rounds of Rad treatment. I also had a second lumpectomy due to positive margins following the first surgery. My last Rad treatments ended in January of 2010.

    I see my Oncologist every three to six months and Mammograms every six months. The fear hits me with every mammograms as the Radiologist personally visits afterward to tell me that they see some change to my left breast but not significantly and that I should not worry it is probably benign or scarring and that I should follow up in another 6 months!  

    I am happy to find this group of Triple Negative warriors and find comfort that I am not alone and that I am not crazy. Thanks to all who post here because we surely can use the support of each other and fully understand one another with the worries and also the strength of each other. I am new to this forum, but not to the cancer and have studied it and sucked up any and all information that I can find on IDC Triple Negative.

  • Braveheart
    Braveheart Member Posts: 5
    edited June 2011

    Hi ladies,

    I'm 34 and was diagnosed this January with TNBC. Had radical mastectomy. Just finished chemo, 4DD AC + 4 DD Taxol. My 1st appointment with my onc will be 6 weeks after chemo. He'll do manual exam and will order blood test.

    I'm glad to be part of this group of strong, wonderful women. 

  • Braveheart
    Braveheart Member Posts: 5
    edited June 2011
    Congrats Tiffany! So happy for you!!!Smile
  • Stupidboob
    Stupidboob Member Posts: 330
    edited June 2011

    Thanks for all the support gang............:)

    I want to make something straight as I must have worded it wrong.   I am assuming that BS is for breast surgeon?  If so, I could not be happier with mine.  He is WONDERFUL!!!

    Did any of you have issues with low blood pressure?  I have had it for 2 days now and it is horrible.  My BP last night was 99/53 WAY TO LOW FOR ME and I felt horrible.  I usually run on the high side.   I reported it but unless I am running a fever they don't seem to concerned with stuff.  I have suffered with throat pain since day 3 and still have it.   I have had so many weird body things going on that I just want to say the hell with it all.   I feel so weak I can't stand up for long.  I am an a/c and heating unit all in one.   I am a weeping willow.   The ON said that he thinks it is just the chemo reaking havoc on my hormones.   I can not take this, and then with my anxiety I am afraid to take my xanax because it too makes you BP go down, and if mine gets much lower I won't be here.    Any advice?

  • Titan
    Titan Member Posts: 1,313
    edited June 2011

    Hi Braveheart...love your pic of the rose and your "quote"...and glad you are done with chemo..time to move on now and pick yourself up again..body and soul..it takes a while..BC damages your soul along with your body...it's hard to come back from this...it's not easy...baby steps..ok??

    Ok..now that one of my post was deleted I really feel part of this board..ha ha..first time for everything I guess..The mods did pm me and explain the situation to me..I completely understand..I broke the rules....(I swore in post)...I know that I can't come on here and swear...at least too much..

    Glad we had some good news this week...let's keep it going...and everyone have a great weekend..we are going to a wedding..first of many this summer including my daughter's in October...honestly..I'm feeling a little overwhelmed..no wonder I started swearing..ha ha.

  • HeidiToo
    HeidiToo Member Posts: 965
    edited June 2011

    Titan... what the f*ck? You swore in a post? How the H*ll am I still in here then?

  • HeidiToo
    HeidiToo Member Posts: 965
    edited June 2011

    PS- I have "graduated" to yearly mammos now. So, feel like I'm looking over that cliff again, wondering how far I can fall w/out closer monitoring. Still on 6 mo onc visits though...

  • blondelawyer
    blondelawyer Member Posts: 104
    edited June 2011

    I just found out today that my tumor is not responding to the the taxol.  I am TN and am doing neo-adjuvant chemo to attempt to shrink the cancer down before surgery.  Today's MRI revealed that my tumor has grown in the 3 weeks since I have been on taxol (I was on taxol first because of a research study).  So, study is out the window and I start AC on Monday.  I'm honestly freaking out a bit to find out that my tumor did not respond to taxol.  I know that AC are big guns and that there are other options for chemo, but with my triple negative status, I am just worried that my options are going to be limited.  

  • Suze35
    Suze35 Member Posts: 559
    edited June 2011

    blonde lawyer - it is scary to hear, I know, but the good news is they caught it! I became resistant to Taxol/Carbo, but I absolutely responded to the AC (I had it first). There are other options as well! I'm going to do Xeloda and Ixempra, both of which act in ways that are novel to my cancer. They will monitor you closely, and change things up again if need be. It sucks, no doubt about it, but the neoadjuvant therapy has given you valuable information - you can use that information to improve your outcome. If you had surgery first, you'd never know the cancer was resistant. Hang in there!



    Heidi - sorry to hear they ran out of funding for the testing. That stinks. I hear you on the lack of quick mobility, hopefully it will ease over time.



    Welcome to all of the new women, I'm so sorry you have to be here.



    Stupidboob - AC kept my BP low also. You are going to get sick of hearing this, but fluids, fluids, fluids! Dehydration plays a role in the low BP. Even if you have to get an IV bag of fluids, it would help you feel better.

  • ksmatthews
    ksmatthews Member Posts: 743
    edited June 2011

    blondelawyer- sorry for your news. I do TAC once every 3 weeks, so far seems to be working as you can no longer feel the tumor, I have 2 treatments left and then will do mri.

    good luck

  • Titan
    Titan Member Posts: 1,313
    edited June 2011

    Ha ha Heidi..I think I forgot to use the ***#..stuff..I basically told this *bb8*tc**h..to stick her comments up her **SAS..***...I think you may remember her..rumor is that she is the "not buying into it"...person.

    Blondelawyer..here is hoping the AC will work for you..I really, really hope it does..it is strong stuff..I did AC first...really didn't have too many issues with it...it's alot quicker to infuse than Taxol...like 1/2 the time...never really had any side effects.just felt "different'...

  • Titan
    Titan Member Posts: 1,313
    edited June 2011

    Like your dew rag KsMathews!

  • Stupidboob
    Stupidboob Member Posts: 330
    edited June 2011

    Suze35 how did you go about getting your fluids IV did you just ask for it or did they do it?  Also, should I request it before or after.     I am going to try sucking on the ice during treatment as to not get as bad of mouth sores (read it works, we shall see) my throat feels like it has no skin on it or my esphogus

  • Titan
    Titan Member Posts: 1,313
    edited June 2011

    Heidi...I've been only yearly mammos for..ok..1 year now!  one six months after surgery, then another one in six months, then one year later (this year..had it in May)..not due to go back until next May...I'm not as dense as I used to be..Hooray!  The mammo report said that there is basically NOTHING there..boring as heck..I love it...Still on the every 3 months with the Onc and every 6 with the BS...so really nothing has changed.

    My mom had Hodgkins disease 10 years ago..her onc just released her this week...said she was cured...so anyway..I think that we are all going to followed for a very long time...

    Not a bad thing..

  • Stupidboob
    Stupidboob Member Posts: 330
    edited June 2011

    Since I am new to this, do you all really trust your mammograms?   My cancer did not show up on my mammogram.  Now, I don't trust them.  I know they pick up alot of cancers but I did not know that they don't pick them all up.   Why in the world they would tell women to stop self exams is beyond me when the mammos don't pick them all up.  

  • Suze35
    Suze35 Member Posts: 559
    edited June 2011

    Stupidboob - my mammo completely missed mine as well, which is why I went for the BMX. I just would be too nervous every check up.



    Re: fluid, when I was getting my chemo, I would just have the nurses schedule an appointment for me to get fluids. I could also call and get something the next day if necessary. I would give your doctors office a call and ask if you can go in for fluids, tell them you are struggling to get liquids in and need the boost...they are usually really good with that sort of thing!



    Also, be sure to mention the mouth sores - there is a prescription mouthwash they can give you to help. There is no reason for you to suffer!



    Titan - yea, that poster is the same $&@&% with a different username. Ticks me right off!

  • MBJ
    MBJ Member Posts: 3,671
    edited June 2011

    Blondelawyer:  I agree with Suze, now you know to switch to another chemo.  We are all different and there is a chemo coctail for everyone.  Hoping the AC kicks b#$t.

    Titan:  OMG-she/he posted randomly, confrontationally on another thread and we were all WTF???  It was so out of context to the conversation that we were all left scratching our heads.  It takes all kinds, huh?

    Heidi:  Glad all is clear and that you haven't been deleted for your potty mouth :)  I have found that I now need to dress much warmer, slightly uncomfortably warm to get my body temp up to normal--the good news, is my body aches go away at 98.6 and only at 98.6--the problem is trying to keep it there.  Try taking your temp when your body hurts the most--I am usually below 98.3 when I am in pain and when it's cold out I get as low as 95.6 and then I can't even walk.  My favorite pain free time is in a hot bath or shower or driving in my hot car or with the heater blasting=no pain!

  • swiftbird
    swiftbird Member Posts: 78
    edited June 2011

    Titan - good for you; glad you're keeping on things, even if you get booted off ;)  

    I'm with many here. I do my 3 month onc appt at May on Monday; blood work up etc; did my 6 month mammo a few months ago.  In leading up to monday, every little ache or twinge and my mind goes to the worst case scenario. Hate it but getting accustomed to it.  BTW, from when do we measure 'anniversary' date? (esp for us neoadjunctive treatment gals) I read it somewhere during my chemohaze, but can't recall LOL

  • swiftbird
    swiftbird Member Posts: 78
    edited June 2011

    oops, redo...

    Titan - good for you; glad you're keeping on things, even if you get cyber-deleted ;)  

    I'm with many here. I do a 3 month onc appt on Monday; blood work up etc; did my 6 month mammo a few months ago.  In leading up to monday, every little ache or twinge and my mind goes to the worst case scenario. Hate it but getting accustomed to it.  BTW, from when do we measure 'anniversary' date? (esp for us neoadjunctive treatment gals) I read it somewhere during my chemohaze, but can't recall LOL 

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