Calling all TNs

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited December 2010

    Laurajane, that is excellent about your bone scan. I still have what I think is "connective tissue" pain, around joints but radiating through my arms and legs. It comes and goes, but I think its from the Taxol. Its getting better.

  • Teka
    Teka Member Posts: 10,052
    edited August 2013

    Suze35,

    Do you really think all scientists are that heartless?   Has our world become that cruel?

  • Suze35
    Suze35 Member Posts: 1,045
    edited December 2010

    Teka - not necessarily the scientists, but the drug companies - yes.  The history of Herceptin is a good example.  I just read an article about antibiotics - and how drug companies were not interested in the expense of finding new ones because they weren't profitable.  They preferred to focus on drugs that were - such as cancer therapy.  Given the way drugs are tested and approved, there are probably many ways drug companies can slow down the process, sadly.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
    swanny- not to worry. I'm sure plenty of people with root canals go on to live long and healthy lives.Wink
  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Suze35,

    I don't want any part of your world.

  • Suze35
    Suze35 Member Posts: 1,045
    edited December 2010
    Teka, I'm sorry if I offended you Frown - that wasn't my intention.  I have always been a half-glass empty person, which I know sucks.
  • kelben
    kelben Member Posts: 269
    edited August 2013

    This is my first post here, but I have read a lot of your posts.  I didn't know about TN and that it was so aggressive until just a few days ago.  I thought I was good 'cause I had a MX which got all the margins clean and clear, had 4 rounds of chemo finished in September, my onc. didn't seem too upset and my BS was happy.  Crap!!

    I have a mammo. scheduled for next month, and I will ask for an MRI and I have an app't with PS in Feb.

    Is there anything I've missed ? 

    Kathy

  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Suze35,

    I so wish there was a world where health was more important then money.   I am 61 and sometimes cry when thinking what the future might be for my children.   We must now think of something cheerful.   

  • friends
    friends Member Posts: 13
    edited December 2010
    Thank you laurajane,MBJ,Suze35 and swanny for your nice words,you are all so strong and brave,I can't believe the strenght my daughter shows when the rest of my family are falling apart.....about the drug companies holding it back I'm sure of it ,like I have heard said no money in a cure....MBJ I will look that up,you always have lots of info Smile thanks.
  • Suze35
    Suze35 Member Posts: 1,045
    edited December 2010

    Teka - oh, I so agree.  And I think I'm going to make a real effort to keep my thoughts upbeat and positive.

    My best moment of the day - my boys just came home from school, and we are going to decorate gingerbread cookies Smile.

    Peace everyone!

  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    kelben,

    Yes, think positive!Smile

  • friends
    friends Member Posts: 13
    edited December 2010
    Thank you laurajane,MBJ,Suze35 and swanny for your nice words,you are all so strong and brave,I can't believe the strenght my daughter shows when the rest of my family are falling apart.....about the drug companies holding it back I'm sure of it ,like I have heard said no money in a cure....MBJ I will look that up,you always have lots of info Smile thanks........ bastards!!!!!! (drug companies)
  • kelben
    kelben Member Posts: 269
    edited December 2010
    Oh ya, thanks      Teka         Embarassed
  • kelben
    kelben Member Posts: 269
    edited December 2010

    thanks Teka, I know I didn't sound it, but I am usually very positive, just frustrated I guess.    Undecided

    Kathy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    kelben- chances are you *are* good. It sounds like your doctors have confidance in their treatment. Try to do the same. More testing does not equate to better treatment, as it has it's own issues (scanxiety, as it is commonly called, being one of them). If you read through this thread you will see a wide variety of thoughts on additional testing and follow-up care.

    Take care.

  • Teka
    Teka Member Posts: 10,052
    edited August 2013

    kelben,

    We're a crazy but fun bunch.   The crazy train is about to leave the station.   Hop on!  You'll never be bored.SmileWinkLaughing

  • kelben
    kelben Member Posts: 269
    edited December 2010
    I'm there, thanks bunches.    Laughing
  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2010

    Kelben:

    We all have the exact same fears and anxieties - more time out and they will temper "somewhat."  So never fear to post what you are feeling we will ALWAYS understand.  We all just have to trust that we did all we could with our doctors leading us, and that all will be well.  And you must always remember - there are MANY triple neg ladies that never recur.  Just keep reminding your self of that.

    And welcome to our thread - glad to have you here.  Best always,

    Linda

  • jenn3
    jenn3 Member Posts: 3,316
    edited December 2010

    I just wanted to pop in to say hello and welcome to the new ladies. 

    I had my first real hair cut since starting chemo in Aug 09.  I love, love, love my hair.  I liked the curls that I had, but now that they're highlighted and I have a good shape and goal with length I LOVE it.  It turns out my hairdresser is very versed in chemo hair and curly hair - she takes classes and seminars.  I'll try to get an updated photo on over the weekend.

  • meglove
    meglove Member Posts: 267
    edited August 2013

    I think C in the dose dense AC might have given me a huge headache so on day one, I already vomit a few times because of that headache. Tried warm pad, in fact, not sure if cold would work better. Can not imagine what is ahead of me. Any insight about what I should do more? I took one anti-nausea pill but did not keep down. Now I am on suppository to use rectally. Hope it helps. Can I take tylenol? would regular be fine? thanks so much.

  • kelben
    kelben Member Posts: 269
    edited December 2010

    thank you all for the warm welcome. 

    Jenn3   congrats. on your hair.  Mine is on its way, about 1/4 inch long.  Mine was curly before it fell out so I'm not sure how it will come in.

    meglove sorry about your nausea... geez hopefully the suppository will help.  I'm thinking postive thoughts for you.    Undecided

  • MonikaV
    MonikaV Member Posts: 201
    edited December 2010

    Laurajane : So happy that your scan is clean!!!!!! I have to go in next Tuesday for bone scan....

    Jenn3 : I can't wait until I can have a hair cut too. :)Smile

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited December 2010

    Wow, this thread is so busy today.  I can't keep up.  I don't know where to start. 

    Welcome to all the new ladies.

    LauraJane - what wonderful news your scans being good.  Your posts are so uplifting and your great attitude is infectious!

    Jenn3 - glad to hear you had a nice haircut.  Looking forward to seeing it in pictures or live when I'm in New Orleans. 

    Roots canals and cancer...hmmm - I had a root canal 25 years ago and have another tooth that's kind of iffy for going that way in the future.

    Friends - so sorry to hear about your daughter.

    Nothing too exciting going on with me these days so I don't have a lot of add but I alway read your posts and love to hear what's up with everyone. Take care.

    Sherri 

  • moe0279
    moe0279 Member Posts: 200
    edited December 2010

    Hi ladies, 

    So I went for my appointment at UNC and it was great...So much different than what i have locally...I had everything completed that took me a month to do here...

    Has anyone participated in a Clinical Trial?  Pros and Cons?  

    We have a plan..Sentinel node biopsy if lymph node comes back negative, port, and clip... Chemo, possibly radiation, then surgery with reconstruction.. this is completely different than the original plan..we feel much better..Im definitely TN and UNC has a clinical trial for TN patients..not sure about the meds that it will add..

    thanks for listening and giving me guidance! 

  • MBJ
    MBJ Member Posts: 4,352
    edited December 2010

    meglove:  So sorry you are having this reaction.  Maybe the nurses need to get your dr to approve more anti nausea meds.  I threw up only the first round and that was because I didn't take the pill as directed.  After that I never missed one. I hope the suppository works.

    Jenn3:  Yay for great hair stylists!!! 

  • laurajane
    laurajane Member Posts: 321
    edited December 2010

    Wow! Busy, busy busy. I used to be able to try and catch up in one day on all of the posts. This is fun!

    MBJ- Root canals? Makes sense to me. I've had so many but I would need to go to dentures if I had all of my bad teeth removed. Really has me thinking, though. I bought a live tree also. Hope to stop procrastinating and decorate it tonight. I feel really pretty good today. Its a wonderful feeling.

    Suze35- Thanks for the note on Rena. I love hearing stories like that. As a matter of fact, if anyone else can share positive stories on TNBC survivors I would love to read them. I've beeb really nauseaus on this chemo cocktail too! Even the smell of chicken soup makes me want to hurl. I have been drinking ginger/peppermint tea and it really has helped me. What a wonderful feeling to feel your tumor shrinking. Mmmm! Baking x-mas cookies with my kids is one of my favorite traditions too!. I say kids but they are 17 and 25 LOL.

    Mitymuffin- I hope your pain diminishes soon. I find my pain more tolerable now that I know its not bonemets well that and the wonderful pain pills. Ha Ha!

    Jenn3 - Looking forward to your pic. I love hearing the happiness in your post.

    Monika- I'll be thinking of you next week and hoping you get great results. I know it is so terrifying going in to have that done. 

    Moe - Sounds like you're in good hands. It has to be a good feeling to have a strategic plan.

    My plan for the day: I'm going to bundle up and go outside to hang x-mas lights today, make a fresh cut on my tree bring it in and decorate it, and clean my house so it feels spic and spam. Lets all see how much of this I might actually accomplish today. I am still sitting in my robe and it is already 11:30AM. LOL. I hope everyone does at least one thing today to make themselves smile. Enjoy the moment!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Well, I finally finished putting up the Dicken's Village and am now working on the North Pole. Instead of climbing up and down on steps stools to light them I am now contorting myself under two trees hooking up all the lights and accessories on the colorful NP houses.

    Maybe when this is all done I'll take a little video (at night when it's all lit up) and put the link on this thread. I really enjoy picture taking. Tomorrow I have another field trip with my nature class--- hope my fingers don't freeze on the shutter button!

    Meanwhile, I am cleaning house for company, something I usually don't do (have housekeeper--- I know, I know...) and the d*mn vacuum is not working properly. It (doesn't) suck...Embarassed

  • laurajane
    laurajane Member Posts: 321
    edited December 2010

    Heiditoo- Sounds like so much work but I bet it is beautiful. I'd love to see it as I'm sure the rest of us would. Please don't let your fingers freeze we love the photos you so often post with us.

    -"Speaking of constipation" I know it sucks when the vacuum won't suck. LOL. 

  • slcst12
    slcst12 Member Posts: 161
    edited December 2010

    Hello ladies!

    Just checking in with everyone.

    I'm intrigued by the root canal discussion. I got one several years ago (my only one) and it's on the same side as my BC.

     Also wondering if anyone has had experience with the "volunteer" housecleaning?  It's a service that you can sign up for during chemo (your onc has to sign off) and they contract out with local services to do your house once per month for 4 months. Has anyone done this?

    I also wanted a quick thumbs up / thumbs down on wig vs. scarf.  A good friend who went through chemo said that she preferred wigs b/c she was working (and with scarf, everyone has to come up and tell you their cancer stories). I have another friend who loved the freedom of scarf :)

    Just wondering what you thought!

    Thanks!

  • kelben
    kelben Member Posts: 269
    edited December 2010

    I am wearing hats and scarves and I don't like them, but I think the wigs would drive me crazy.  I'm afraid I would be pulling and pushing it all the time.   I never wore anything on my head before I lost all my hair, even as a kid I wouldn't keep a hat on.  So, sorry I can't be very helpful, but the scarves are beautiful, inexpensive and easy to maintain.... wigs aren't

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