Positive discussion about TN

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Uma,

    I will be doing #8 of my 12 weekly taxol on Monday. I then have 4 of something else. Not sure what the last four are. I did shave my head but not completely bald. It is just buzzed all over. It still seems to then out.... Guess by the time it is all said and done I should be BALD. I too was wondering how long it takes for that hair to start to really grow??????

    Gillyone,

    I too am planning on reaching that milestone with Shirlann.

    GOD BLESS US ALL!!!!!!

    Let us keep that positivity flowing.......

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  • gloriam
    gloriam Member Posts: 2
    edited August 2009

    I like you have the triple negative thing going on.  I have had a lumpectomy and started Chemo

    2 1/2 weeks ago with number 2 session coming on Thursday.  Neulasta shot on Friday.  I am responsible for my 5 year old granddaughter as her mom my daughter is in jail.  My mother-in-law has been an angel and helping me a lot.  I am so glad I found this site I was sure this was going to be a death sentence and doing all of this would be for nothing.  All the people on this site have wonderful stories and when I finish this journey I will be happy to share my story.  Good luck to all my sisters with breast cancer we will overcome this disease.

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  • carolinachick
    carolinachick Member Posts: 387
    edited August 2009

    Welcome gloriam.  I'm sorry that you have to go through this, but you will find wonderful friends and support here.

    Pinkdove - I had my last chemo on April 22, so it's taken about three months or so to get to this point.  I was on a cruise last week and didn't wear a scarf the whole time.  I did wear a hat every once in a while because of the sun.

    I go back this week for my three month checkup with my onc and my one month checkup with my radiation onc.  It's been wonderful to have four whole weeks without a doctor's appointment!

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  • Dragonfly1976
    Dragonfly1976 Member Posts: 1,637
    edited August 2009

    Just wanted to say hello to everyone on this thread!! Finish my chemo next week, and had my follow up CT scan on Friday. So here's to praying it's all clear still and moving on to the next step in this journey :)

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited August 2009

    Hi all,

    I'm just back from vacation. 

    Cottonwood I was tested for BRACA I and II and it came back negative.  I was kinda of shocked that it was negative.  I had myself all ready for the additional surgeries.  I really had very strange mixed feelings.

    I have about 3/4 on an inch of hair now also and have quit wearing my turbans.  It took about two months after my last chemo infusion to really be able to tell that hair was starting to grow.  Initially it seemed like my eye brows were filling in and then when it seemed my hair was starting to grow all of my eye brows fell out again.  Now I'm 3 and 1/2 months post chemo.  I have eye brows which I had to have waxed for a good shape, short, but full eyelashes and hair.  With diet and exercise I'm planning to make those long term milestones as well. 

    Have a nice weekend everyone.

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited August 2009

    How great to read all your stories....have any of you joined tnbcfoundation.org (triple negative breast cancer foundation)?  Their forums aren't as easy to navigate as they are here but their info is helpful. Just wondering.

    Cottonwood---how are you? 

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    So glad to find this forum. I so need some positivity in all of this....I did join the triple negative foundation and there is some good information there. I also think it is a little harder to navigate there. I go to the boards and check often......STILL WAITING ON THE CURE!!!!!!

     God Bless Each and Every One Of Us.....

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited August 2009

     Hi all Positives

    Carolinachick- thanks.  I am looking forward to not wearing my scarf too....soon!Cool

    Debonthelake- gr8 to know that u have yr hair back. I too have read that weight control, diet and excersise will help in keeping the Bc in control.

     Rads have started....2 down, 28 to go.

    Hugs to all

    Take care

    Uma

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  • cazza
    cazza Member Posts: 43
    edited August 2009

    Hi there

    I have just passed my 4 year anniversary. Here is counting down to the 5 years. I have to say it's been a bit of a rough road for me. I have other health problems that get in the way sometimes but I'm so happy to be here. The 4 year anniversary is from the date of my masectomy. 

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited August 2009

    gr8 to hear about yr anniv Cazza.  we will soon celebrate the 5 yr mark too

    Uma

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited August 2009

    Hello Ladies.

    I am TN Stage IIA.  I am loving reading all of the positive posts.  I am very overweight and I know I have to lose this weight in order to live.  I do not want this cancer returning.  It is no longer about how I look or feel, but about staying alive.

    I start chemo AC/T on 9/3.

    Anita

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited August 2009

    Scooby Doo,  I know what you mean.  Now the motivation is not fashion or looks but survival.  It's an entirely different type of motivation.  That being said smaller clothes are fun too.  Good luck with your chemo.  The AC is the worst from what I've read.  So you'll start rough and life should gradually go up hill from there.  God Bless

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  • Diane48
    Diane48 Member Posts: 50
    edited August 2009

    Scoobydoo I have my final A/C this week and it has not been too bad. I too have to lose some weight, I am hoping that by eating more veggies and fruit some of the weight will just come off!!

    Good luck to all

    Diane

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  • jenn3
    jenn3 Member Posts: 3,316
    edited August 2009

    I just wanted to stop in and say I love reading the post - it helps to hear positive things about triple negative.  I just started my AC part of my treatment last week and am counting down.........

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  • Gorilla12
    Gorilla12 Member Posts: 63
    edited August 2009

    Hi Everyone!

    I wanted to post a link to an article from February 2009 that has very GOOD NEWS for Triple Negative folks :-) I realize that some of the newer people in the group may not have seen this. Just paste the link below into your browser and then hit the middle icon at the top of page marked "trip neg". Hope this makes you feel better - I know it did me :-)

     Take care! 

    http://bcwatchdigest.evidencewatch.com/

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited August 2009

    Thanks for that post Gorilla.  I just had a very sad moment after watching a clip from a CNN special regarding TN women.  I have been crying for the last 2 hours because of that clip and I desperately needed positivity.

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  • greytmom_17
    greytmom_17 Member Posts: 162
    edited August 2009

    Well ladies, here's a positive.  I had my 4th and LAST chemo yesterday.  Now time for the monitoring and follow up and the hoping that this beast will remain at bay.  Nice to hear the good stories!

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  • carolinachick
    carolinachick Member Posts: 387
    edited August 2009

    Gorilla - Thanks for the link.  It was great information and very encouraging. 

    I had my three month checkup with my onc yesterday, and it was a breeze.  Here's to keeping the beast at bay!

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  • rinna40
    rinna40 Member Posts: 357
    edited August 2009

    Nice to read so many positive comments. I just finished my fourth treatment, I did three FEC and now I have to do Three Docetaxol. This last treatment was not so much fun. I'm digging in to find the strength to show up for treatment four and five!! I'm living for November, when rads will also be done and I can put treatment behind me and start living the life of a cancer survivor. 

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Rhinna,

    I am doing 12 weekly Taxol first. I have completed 9 of those. I have 3 more Taxol. I will be doing FEC after the Taxol. I will have 4 of those treatments. They will be done once every three weeks. I am nervous about those. There is a forum here for FEC. I have been watching it. I am curious how you did on the FEC. Was it manageable. There is a lady on the FEC forum wanting to know about how long it would take to lose hair on FEC. I could not answer her due to the fact I am not doing that yet. Maybe you could give her some insight. I believe she is Karen09.

    May God Bless Us All

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Hey ladies,

    Wanted to know if ANYONE else has heard anything about a triple negative vaccine. I saw something on this. It seems it is in clinical trials. I know it is given AFTER treatment to help keep the beast away. I was just wondering......Did not know if it was accurate information.

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited August 2009

    Check out this article: http://www.sciencedaily.com/releases/2008/12/081212141847.htm

    Yay.  More positive news!

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited August 2009

    Oh and I am trying to get into the TN BC vaccine study by Joseph Baar MD.  I will let you know if I am able to get in.  That would be awesome.  I hope this vaccine is a success.  It would mean a lot for all of us.

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Scoobydoo,

    That is awesome. Where is that study at. I am trying to understand the way these trials work. I have heard about phases. Do you know what phase it is in. 

    I am in Arkansas, I am not sure if there are any trials here...I know my Onc. told me in the beginning when I was asking about the PARP she said that is in trials for stage IV only. 

    I have been curious if the PARP is just for BRCA positive women or if it is used for both.

    I am BRCA negative, Have you had the genetic test? 

    Let us know what you find out.

    May God Bless Us All

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited August 2009

    Hi Angelsabove.  I will know more next week.  The study is at the Case Medical Center with Dr. Joseph Baar.  There is a whole thread somewhere on here about this TNBC vaccine and how they wre going to start trials on people in Jan 09.  The lady that is involved in this trial is out of the office until Monday.  Once I talk to her I will know more and will make sure to post what I find out.

    Don't think I was tested from BRCA gene.  Is this a standard procedure when they do the pathology report or is it something I should request.  What is it and is it considered good or bad?

    Anita 

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  • tibet
    tibet Member Posts: 545
    edited August 2009

    Anita

    I would be also interested in this. Pls let me know your discussion with the Dr and the trial. thanks 

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Anita,

    Thanks for replying. I WANT IN ON THAT DANG TRIAL.....GIVE ME ALL THERE IS OUT THERE!!!!! LOL. The BRCA is a genetic test. It is not part of the pathology. The way it was explained to me it shows if you have a genetic mutation. They just took blood and sent if off to a genetic facility and they did the test. My Oncologist just requested that I do it. Girl keep us posted on that vaccine.....GOD BLESS US ALL.....

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  • Tassiechick
    Tassiechick Member Posts: 3
    edited August 2009

    Hi All Positive Negatives - does that in effect make us neutrals?? Undecided

    Been checking up on research recently and there's even a new Aussie one on BRCA 1 and basal cell cancers - which are frequently triple negatives I know mine was.

    Cut and paste to google below 

     www.wehi.edu.au/...lindeman_breast_cancer_nature_medicine_3august09.pdf

    Also in research I found very positive news if you are negative with no mets.

     "Compared to other Gr 3 tumours basal like tumours seem to have a relatively good long term survival!"   Whoopee!!Smile

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Tassiechick,

    How do we know if our tumor was basal like. I have my pathology report but it does not say anything about it........

    Thanks for the info...RESEARCH is what we need......LOTS OF IT!!!!!!!

    May God Bless Us All

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  • angelsabove
    angelsabove Member Posts: 363
    edited August 2009

    Anita,

    Hey I got a question. I was thinking they were going to start the trials for the vaccine this coming January. That would mean Jan. 2010. Ok I am just a bit confused. Atleast I can blame it on CHEMO BRAIN....LOL Just keep us posted girl....We hang on to knowing that SOMETHING must come our way....

    May God Bless Us All

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