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Calling all TNs

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Comments

  • Lovelyface
    Lovelyface Member Posts: 563
    edited December 2010

    Blindsided, MBJ & TifJ - thanks so much for the tips of taking Claritin, I will go take some right now, thank God I have some.  My cough is out of control, I finished the 8 or so antibiotics they gave me. I was certain it is a side effect of Taxol since the antibiotics didn't take care of it.  I have had a slight temperature all day today, just like 99.5 or something.  It says in the directions they gave me that it needs to be up to 100.5 then I should call them.  I hope the Claritin takes care of the cough and the temperature.  This is my second last Taxol, I am getting worried about the last one.  I have been feeling a lot of neuropathy this time and have been just lying down all the time.  I am giving myself at least 4 days of just lying down, doing nothing, but eating, lying and showering, that's it.  Tomorrow would be the 5th day, let's see how it goes.  Thanks all.

  • Swanny
    Swanny Member Posts: 118
    edited December 2010

    All - thanks for the congrats on finishing rads.

    mitymuffin:  I did get tired the last week to week and 1/2.  Couple of nights I went to bed at 8:30.  Last week I started walking slower around work which to me is a sign of me being tired.  They say to watch the skin closely for the week after finishing because I could still have problems - and of course still use the salve.  If after a week, no problems then they say I should not have any problems.  For me rads were so much easier than chemo. 

    Next week is see the BS and the Onc for my follow ups.  Mamo and Pap in March.

    Hope everyone is enjoying the holidays.  It is cold 14 degrees outside. 

  • laurajane
    laurajane Member Posts: 305
    edited December 2010

    Swanny- congratulations on finishing your rads. I'm so glad it was easier on you.

  • kelben
    kelben Member Posts: 199
    edited December 2010

    congrats. Monika and Swanny, thats a real nice Christmas present. 

    I will be getting my first mammo. since surgery.  Only one to do now so thats a postive.  being TN, what will they treat me with if they find something?

  • ChrissyMH
    ChrissyMH Member Posts: 21
    edited December 2010

    Hi MicheleS and all,

    Michele - I couldn't help but notice that we have nearly identical pathologies.  I was diagnosed on Oct. 12, 2010, with 1.5cm Stage I, Grade 3, 0/7 nodes, ER-/PR-/HER2-.  I had a lumpectomy.  I had my first of 4 TC infusions on Dec. 3rd.  My second will be Dec. 23rd, followed on the 24th by an injection of Neulasta because my WBC count fell lower by Dec. 16 than it was on Dec. 9.  I have had severe bone and soft tissue pain, mouth ulcer, and now painfully cracked skin around a couple of fingers and am nearly 95% bald.  I am immobilized with fear for the future - being TN and having no relatives with BC, and having run 5-6 miles per day for the last 30 years and 4 months.  It appears that you've survived two years - wonderful!  Any information or advice that you would be willing to share with me about your experience pre-, during and following this chemo-nightmare would be truly appreciated.

    Take care.

  • MBJ
    MBJ Member Posts: 3,671
    edited December 2010

    Amy:  I hope chemo kills all of your cancer, but unfortunately, the cancer can come back, hence the need for surgery as well.  Best of luck and have fun Christmas shopping--it can get pretty crazy out there this time of year.

  • MBJ
    MBJ Member Posts: 3,671
    edited December 2010

    Swanny:  Congrats on being done.  Take it easy and give your body some time to heal.

    Laurajane:  My Onc and Integrative Dr. told me nothing the day before or for 2 to 5 days total during chemo but then everything was fine after this.  I now some Oncs say nothing at all, however, my dr's told me chemo only does it's job for about 72 hours and then it is just waste in the body and you are trying to get it out of you as quickly as possible.  Do what feels right to you and your body.  I had some of the best doctors in the country who are triple negative specialists and my onc has over 37 years experience!  I was lucky to have them as they are also some of the moste expensive doctors in the country, too.

    Lovelface:  I hope that the Claritin works for you.  Keep a close eye on your temperature, and at any sign of it going any higher, get yourself to the hospital!  Hugs.

  • MBJ
    MBJ Member Posts: 3,671
    edited August 2013

    Monika:   I'm doing the Happy Dance!!!!!! Wahoooooo!!!!!

  • laurajane
    laurajane Member Posts: 305
    edited December 2010

    MBJ - Thank-you. What was recommended that you take to remove the excess? Since my chemo schedule is day1 then day 8 and then one week off. I dread having to go back again this Tuesday. 

  • mitymuffin
    mitymuffin Member Posts: 242
    edited December 2010

    Swanny,  Thanks for the words on your experience. I'm glad to know I'm not alone in the fatigue.

    ChrissyMH, I'm sorry you have to go through this right at Christmas. I hope you have some supportive family and/or friends. Its a tough road but most of us on this board have been through it.  Just take it day by day. I posted this link the other day, but I'm posting it again just for you. Take heart: http://www.webmd.com/breast-cancer/news/20101217/breast-conserving-therapy-better-than-mastectomy   Notice the part where the study says

    " Still, both treatments work well, with about 93% of 62,770 women who had lumpectomy followed by radiation -- and 87% of 51,507 women who had a mastectomy -- alive more than four years after diagnosis."

  • Claire82
    Claire82 Member Posts: 490
    edited December 2010

    I wouldn't use this one study to make my decision. I think talking to all the doctors involved and using their experience to make your decision is best. There are so many varibles to these studies.

  • MicheleS
    MicheleS Member Posts: 196
    edited December 2010

    Hi ChrissyMH! Welcome!  I was treated a bit differently than you but I will echo what Claire alluded to above... there are so many ways to go about treatment, you need to do what you and your MD feel comfortable with... It feels surreal that are asking me for insight.  I feel like I was diagnosed just yesterday!!  Sometimes I think that chemo is like childbirth.  It is so haaaaard and painful while you are going through it but then you forget.  I *know* that I was really, really sick but, honestly, I can't really put all of the details together.  And, that's OK.  With that said, I worked throughout (sort of) and was able to take care of my kids/family.  I know that right now, everything may seem overwhelming to you, but it gets better.  You'll even wake up 1 morning and cancer won't be the 1st thing you think of! Really!  Finally, the stats may seem bad (especially when you read about how much better they are for ER+) but most of us will be just fine. 

    xxoo

  • Claire82
    Claire82 Member Posts: 490
    edited December 2010

    I feel the stats are with us TNS girls. When we hit 5 years - we are better off than them :)

    Notice i said WHEN... not IF :)

  • Titan
    Titan Member Posts: 1,313
    edited December 2010

    Agree Claire!   Although this is just one study...it is good to know for those that had a lumpectomy and for the women that may question their decision..that this study gives them a basis for knowing that they made an OK decision..I had a lumpectomy (on the advice of my doctors)...I KNOW that a lump and rads equal a masectomy..but sometimes..reading on here..I questioned my decision...

    It truly is a personal decision...but even so you want to know you made the right choice...it's good to know that either a lump/rads or masectomy .whatever you choose is the right one FOR YOU and quite possibly the same results as for as reocurrence...I like that! 

    Oh..and Monika..tell us who that guy is with you..pretty cute! 

  • Claire82
    Claire82 Member Posts: 490
    edited December 2010

    My treatment was mastectomy and chemo - double blast of the gun!

  • MBJ
    MBJ Member Posts: 3,671
    edited December 2010

    Laurajane:  I actually took one them during the chemo and this was recommended by my nurse.  Instead of stool softeners which didn't work too well with me I used the Mag07 starting the night before and then tapered off completely within 4-5 days.  I had vit C and Magnesium IV's during my off weeks through my integrative dr.  and I also took Milk Thistle to help clear out the liver plus all of my other supplements: A, B's, C, D, E & K.  I think that I sent you my list of stuff I took, but I can always send it again.  I always dreaded my chemo appointments.  It felt like I was volunteering for having the flu--it sucks but it's a necessary evil.   

  • laurajane
    laurajane Member Posts: 305
    edited December 2010

    MBJ- Thank-you. It's interesting that my integrative doc I saw in NY was so against Vit C and expained in detail why one should not take it. It's surprising that docs differ so much from coast to coast.  How are you handling all of that rain I heard you are getting out there?

    MicheleS- You are so right about forgetting what chemo was like.

    This Carbo/Gemzar is not fun. Like MBJ said it's like volunteering for the flu. I've been asked if it is as bad as the AC I did and I can barely remember what the Taxol was like in August and September let alone the AC I did last June and July. When I see my onc tomorrow I will ask how long I will be getting it for. It was so nice having the time off of chemo when I had surgery I kind of got spoiled feeling so good for a while. Well heres to hoping it works!

    I'm going to bake Christmas cookies today with my daughter and try and put off thinking about tomorrow. I hope everyone has a great day.

  • TifJ
    TifJ Member Posts: 804
    edited December 2010

    I had my BRCA test sent off last week. Is there anyone out there that was dx before 50, had both IDC and DCIS in one breast and, of course, is TN? My onc told me that all these put me in a higher likelihood of being positive. There is no history on Mother's side, but did not know my father or his side. Still, he said my chances are only 15-20% of being positive.

    Would love to hear from any you on your BRCA results-either positve or negative.

    Thanks, Tiffany

  • MicheleS
    MicheleS Member Posts: 196
    edited August 2013

    Tiffany~ I was dx'ed at 36, IDC (1.4cm) and DCIS (5mm) in my left breast, and TN.  I'm BRAC-.  With that said... I *still* had a bilat and had my ovaries out.

  • TifJ
    TifJ Member Posts: 804
    edited December 2010

    Thank you Michele! I have had one mx, but I have considered having the ovaries out even if I'm negative. I have had a hard time finding anyone with our stats and being BRCA negative. I hope you are doing well!!

  • kad22
    kad22 Member Posts: 58
    edited December 2010

    Hi All,

    I have not been on here for so long - computer problems!!

    Today is my 3 month from Chemo - check up last week was good!

    Today I go in for my reconstructive surgery- excited but nervous - hate gong under!

    Tiffany - I am BRCA+ and had lump in one breast  but I have a strong history of cancer on my mother's side.

    Still haven't seen what has been all posted will have to take time and go back to look at the last 12-14 pages!! LOL

    Happy Holidays, Kelli

  • sugar77
    sugar77 Member Posts: 1,328
    edited December 2010

    Tiffany - hi, I was diagnosed at 45 and had both IDC and DCIS components.  I did not "qualify" for genetic testing due to no family history. I did Lx plus radiation after chemotherapy.

  • TifJ
    TifJ Member Posts: 804
    edited December 2010

    Sugar- As usual all Drs are different. Mine said testing was automatic for anyone dx before age 50. Having 2 different cancers in the same breast and being TN made it mandatory! I opted for mx as the two areas were on the top of my breast and my BS said it would leave me with a sinkhole. Thanks for your response!

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited December 2010

    Mitymuffin, I love your hair! Can't wait to start growing some hair back!

    TWO MORE TREATMENTS LORD GET ME THROUGH THIS!!!!!!! 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited August 2013

    Wow--- subbed today for high school and one of the classes had us watching "Food Matters." Anyone ever see this movie? I felt like slitting my throat after watching it, as everything we do as a nation wrt eating is all wrong according to these guys. Apparently, all we need to do to stay healthy is eat organic food and Superfoods (Gogi, Acacia, Noni, etc.)

     Now, I have to go Google it and get the real facts, as apparently chemo will give you cancer and what you really need to do instead is have high level infusions of Vit. C to cure your cancer.

    Yeah, right. I was reading something in BC.org about that very subject recently and recalled someone really debunked it with other studies.

    Don't get me wrong, a lot of it made sense BUT, as a cancer patient a lot of it seemed like NONsense too. I realize many in here are seriously into trying to prevent recurrence, but this film just struck me as a bit over-zealous or, at a minimum, over simplistic.

    I've got it. Let's all move to some remote mountainside, grow our own food, forget pharmaceuticals and take lots of Vit. C.

    Wish it were that simple...

    This movie got under my skin and, since I was the teacher, I couldn't turn it off! Undecided

  • retrievermom
    retrievermom Member Posts: 321
    edited February 2011

    Wow--trying to catch up with all that's been going on.

    Swanny:  Yeah for being done with rads!

    MonikaV:  Yeah for good scan!  Happy dances!

    Fighter:  You will get through this.  And will get hair back.  Hang in there.

    This time last year, I got my dx.  When I was going thru tx, I recall a woman telling me, "you will feel better."  I doubted it.  A year later, feeling much better, tho I have some nagging se's. 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited August 2013

    SAN ANTONIO (EGMN) - The addition of the PARP inhibitor BSI-201 to chemotherapy with gemcitabine and carboplatin in patients with metastatic triple-negative breast cancer resulted in a dramatic 50% reduction in the risk of death, compared with chemotherapy alone, in an updated analysis of a high-profile phase II study. 

    These impressive phase II results with the poly (ADP [adenosine diphosphate]-ribose) polymerase (PARP) inhibitor have led to an ongoing, definitive, phase III registration study involving a planned 420 patients at more than 90 U.S. centers. Accrual for the trial is proceeding extremely rapidly, Dr. Joyce O'Shaughnessy said at the San Antonio Breast Cancer Symposium.

    "The PARP inhibitors certainly look promising. The phase III study will be finished in the first quarter of 2010. If the phase III holds up and confirms the phase II, hopefully BSI-201 will be available toward the end of 2010," added Dr. O'Shaughnessy, codirector of the breast cancer research program at Baylor University Medical Center at Dallas. 

    The phase II study involves 123 patients with estrogen receptor-, progesterone receptor-, and HER2-negative measurable metastatic breast cancer who had received not more than two prior cytotoxic regimens. They were randomized to gemcitabine and carboplatin alone or in combination with BSI-201.

    Initial results were reported in a plenary session at the American Society of Clinical Oncology annual meeting in 2009. In the update,median overall survival was 12.2 months in the BSI-201 group, compared with 7.7 months with chemotherapy alone (hazard ratio, 0.50; P = .005). Roughly 20 patients in each study arm remain unaccounted for; final overall survival results will be available in the spring. 

    The therapeutic rationale for using a PARP inhibitor in the setting of metastatic triple-negative disease lies in the drug's ability to enhance chemotherapy-induced DNA damage. The PARP1 protein is the most abundant protein in the tumor cell nucleus. It plays a critical role in the repair of breaks in single-strand DNA. 

    Inhibiting PARP1 results in single-strand breaks going unrepaired. They degenerate into double-strand breaks, which the tumor cells find particularly difficult to repair. So the cells die, Dr. O'Shaughnessy explained. 

    BSI-201 didn't potentiate the familiar toxicities of gemcitabine and carboplatin. The frequency and nature of adverse events in the two study arms were similar. 

    The PARP inhibitor was given intravenously at 5.6 mg/kg on days 1,4,8, and 11 of every 21-day treatment cycle. Gemcitabine and carboplatin were administered in standard fashion on days 1 and 8. 

    BSI-201 is being developed by BiPar Sciences Inc. Dr. O'Shaughnessy is on the speakers bureau for Sanofi-Aventis, which has acquired the compan

  • KELL414240
    KELL414240 Member Posts: 3
    edited December 2010

    Hi TifJ

     I am BRAC- also. I had both IDC and DCIS in one breast. I am 44. Is your doctor recommending you have your ovaries removed?

  • PinkPeeCA
    PinkPeeCA Member Posts: 25
    edited December 2010

    monika>  gorgeous photo.  congrats!
    Diagnosis: 9/25/2010, IDC, 2cm, Stage IIa, Grade 3, ER-, HER2-

    brac1-2 both negative

    wrapped CA 4x 1 taxol, allergic, start abraxane tomorrow X3, surgery, then rads. no known lymph nodes...... Anyone else have it under arm?

  • TifJ
    TifJ Member Posts: 804
    edited December 2010
    Kell- My Dr. is only recommending it right now only if I prove to be positive. I may choose to have them them taken out even if i turn out to be negative. I certainly don't need them anymore-why risk another cancer. I won't have my results until mid-Jan. Thank you for sharing-it gives me hope that I can be negative!!