Anyone with knowledge of TNBC?Scared of chemo

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crselby
crselby Member Posts: 441 Member
edited March 2014 in Breast Cancer #1
Making new topic for Darlene?Mays who posted to the end of a thread that is over a year old.
Hello
Hi, I am responding to your email yesterday or recently (Jan 16, 2010). I am recently diagnosed with TNBC, and this is my second go round w/breast cancer; my first with TNBC however. This seems much more serious than the first bout, and I am scared stupid with the prospect of this chemo, Taxotere + cytoxan every 3 wks, or I could do cytoxan + taxol and adriamycin...not sure which one the ocologist recommends...both sound horrible. I understand you are well along in the treatment program, and I hope you can help me out. I am 62 and look forward to hearing from you, or anyone in a similar situation.
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  • MAJW
    MAJW Member Posts: 2,510 Member
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    Chemo cocktail....
    I had taxotere and cytoxan....4 infusions, ending the end of August......They are VERY doable...I was never sick one time, not even the first wave of nausea.....they have come a long way with anti nausea drugs which you take at home, along with a steroid and also they pumped me full of them plus benadryl before each infusion. Chemo is scary no matter which drugs you are to receive........I am so sorry you are going through this once again......if I can answer any other questions, please feel free to ask.....I am sure you will have plenty of advice and support on this board.

    Peace be with you
  • carkris
    carkris Member Posts: 4,553 Member
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    MAJW said:

    Chemo cocktail....
    I had taxotere and cytoxan....4 infusions, ending the end of August......They are VERY doable...I was never sick one time, not even the first wave of nausea.....they have come a long way with anti nausea drugs which you take at home, along with a steroid and also they pumped me full of them plus benadryl before each infusion. Chemo is scary no matter which drugs you are to receive........I am so sorry you are going through this once again......if I can answer any other questions, please feel free to ask.....I am sure you will have plenty of advice and support on this board.

    Peace be with you

    ? TNBC

    ? TNBC
  • Marcia527
    Marcia527 Member Posts: 2,729
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    carkris said:

    ? TNBC

    ? TNBC

    I think it stands for Triple
    I think it stands for Triple Negative Breast Cancer. Correct me if I'm wrong.
  • carkris
    carkris Member Posts: 4,553 Member
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    Marcia527 said:

    I think it stands for Triple
    I think it stands for Triple Negative Breast Cancer. Correct me if I'm wrong.

    thank you Marcia. Many
    thank you Marcia. Many people here have had TNBC and received sucessful treatment and tolerated the chemo. you will get support here. I did not have that.
  • boppel
    boppel Member Posts: 26
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    Hi !
    I am sorry you have to go through this again. In my first chemo I had adriamycin, to be honest, yes I was very sick, but that was 10 years ago, the second chemo(3 1/2 yrs later) was more tolarable cytoxan,5FU and one other drug, can't remember at the moment, was sooo long ago, also steroids before the chemo and anti nausea drugs. They have come a long way since then. I wish you the best, it will get better, I am still here, doing well at 66.
    Hugs emmi
  • hamish1
    hamish1 Member Posts: 34
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    chemo drugs I'm taking
    crselby, I'm pretty sure the chemo drugs I'm taking are Taxel and cytoxen every 3 wks, times 4 times. I had my first treatment on the 7th. And I am SCARED TO DEATH OF CHEMO TOO!!! I did great following the treatment,except I did get some diarreha, which was stopped w/ Immodium. However, I had to return to the Onco. yesterday for a check on my blood, and my white blood count was down to 2.4, so I had to take a shot of Neulasta. That shot has totally kicked my butt. I really feel terrible today, and wondering if this always happens to everyone who has to take that shot?
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
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    Darlene
    Hi, Darlene, I was treated for triple negative breast cancer last year. Had mastectomy, then chemo, and finally, radiation. The chemo I had was 6 rounds of TAC, one chemo infusion every three weeks. TAC is: taxotere, adriamycin, and cytoxin. It sounds like that is what you will be getting. I can assure you chemo is very do-able. For every side effect, there is something that can be done to help.

    One big thing you can do is research this board. The wealth of wisdom, experience, and compassion that I found here helped me through every step of my treatment. My husband and I found a lifeline in CSN and its members. You will, too. You can also research past posts. Just enter a key word in the Search feature at the top right of the main page. Or, post your question.

    As for TNBC, you will find several women diagnosed who post here. Beware what you read, get the best care you can, and have faith. You can make it, Darlene. You did once, and you can again.

    My best to you.
  • Skeezie
    Skeezie Member Posts: 586 Member
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    Moopy23 said:

    Darlene
    Hi, Darlene, I was treated for triple negative breast cancer last year. Had mastectomy, then chemo, and finally, radiation. The chemo I had was 6 rounds of TAC, one chemo infusion every three weeks. TAC is: taxotere, adriamycin, and cytoxin. It sounds like that is what you will be getting. I can assure you chemo is very do-able. For every side effect, there is something that can be done to help.

    One big thing you can do is research this board. The wealth of wisdom, experience, and compassion that I found here helped me through every step of my treatment. My husband and I found a lifeline in CSN and its members. You will, too. You can also research past posts. Just enter a key word in the Search feature at the top right of the main page. Or, post your question.

    As for TNBC, you will find several women diagnosed who post here. Beware what you read, get the best care you can, and have faith. You can make it, Darlene. You did once, and you can again.

    My best to you.

    Hi Darlene
    How awful to have to go thru this a second time. I was dx with TNBC in July 09, clean Sentinel Node Biopsy, had simple mastecomy, pathology showed no remaining cancer cells. Had 4 cylces Cytoxin/Taxotere (every 3 weeks) and finished Dec 11. (No radiation) To be honest the chemo kicked my butt. But I too am in my sixties and many on this board are much younger and I think perhaps that makes a difference although it's all miserable. But although I was never nauseated or vomited I had the big "D" practically the whole time. I got some dynamite pills from the Onc, Lotomil (not sure of spelling and the Rx is upstairs) and that stopped it. You may or may not have side effects but it's only 12 weeks and we can do anything for 12 weeks. I am hoping you feel great.

    Regarding the TNBC there is a thread that should only be 1 or 2 pages back that has a terrific article on it. It is an agressive cancer but it responds very well to chemo. At first I was terrified of it but I Googled and got a lot of info and now I don't regard it as the Boogie Man of bc. And the good thing is we don't have to take Tamoxifan for 5 years!

    I am so sorry you are facing this again, once should be enough. But I am sure you will notice things have improved over ten years and the drugs to counteract side effects are pretty good. You can do this and this will be over by springtime!

    Hugs, Judy :-)
  • Mama G
    Mama G Member Posts: 762
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    Skeezie said:

    Hi Darlene
    How awful to have to go thru this a second time. I was dx with TNBC in July 09, clean Sentinel Node Biopsy, had simple mastecomy, pathology showed no remaining cancer cells. Had 4 cylces Cytoxin/Taxotere (every 3 weeks) and finished Dec 11. (No radiation) To be honest the chemo kicked my butt. But I too am in my sixties and many on this board are much younger and I think perhaps that makes a difference although it's all miserable. But although I was never nauseated or vomited I had the big "D" practically the whole time. I got some dynamite pills from the Onc, Lotomil (not sure of spelling and the Rx is upstairs) and that stopped it. You may or may not have side effects but it's only 12 weeks and we can do anything for 12 weeks. I am hoping you feel great.

    Regarding the TNBC there is a thread that should only be 1 or 2 pages back that has a terrific article on it. It is an agressive cancer but it responds very well to chemo. At first I was terrified of it but I Googled and got a lot of info and now I don't regard it as the Boogie Man of bc. And the good thing is we don't have to take Tamoxifan for 5 years!

    I am so sorry you are facing this again, once should be enough. But I am sure you will notice things have improved over ten years and the drugs to counteract side effects are pretty good. You can do this and this will be over by springtime!

    Hugs, Judy :-)

    Just wondering...
    what did you take the first go round? I pretty much thought that these were the "chemotherapy of choice" for all b/c.
  • Lynda53
    Lynda53 Member Posts: 210
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    I am taxol and cytoxin no adiramycin
    my no adriamycin is due to heart issues.
    Hydrate yourself daily.
    take pre chemo pills
    Take antinausea
    take antidiarrea
    take laxative
    rest
    Peace
  • TLynn0102
    TLynn0102 Member Posts: 86
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    TNBC Confusion
    I've read the original post a couple of times because I thought I missed something but I did not. I am a triple-negative BC survivor, and am wondering this: Crselby has BC for a second time but this is the first with TN diagnosis. TN is a make up of genetics. Is it possible that the testing for this is new (from the last time she was diagnosed) or could the original treatment have caused a genetic make up change? I am confused...
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
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    TLynn0102 said:

    TNBC Confusion
    I've read the original post a couple of times because I thought I missed something but I did not. I am a triple-negative BC survivor, and am wondering this: Crselby has BC for a second time but this is the first with TN diagnosis. TN is a make up of genetics. Is it possible that the testing for this is new (from the last time she was diagnosed) or could the original treatment have caused a genetic make up change? I am confused...

    TLynn, unfortunately, bc can
    TLynn, unfortunately, bc can be either. Woman can have a primary hormonal cancer and later, a hormone-negative primary (or vice versa). All cancers have a genetic component, but it is also possible that an error was made with her original diagnosis. Testing of bc has increased as new aspects are identified and tests are developed for those aspects.

    Confusing, I know.
  • Darlene_Mays
    Darlene_Mays Member Posts: 20
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    Hi
    Yes, I have been diagnosed w/TNBC, and will begin chemo on 2/1/10. I am very nervous about the chemo and potential side effects. Everything I read on this type of BC seems to be negative (no pun intended) Any uplifting info would be most welcome. Looking forward to some input.
  • Darlene_Mays
    Darlene_Mays Member Posts: 20
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    Skeezie said:

    Hi Darlene
    How awful to have to go thru this a second time. I was dx with TNBC in July 09, clean Sentinel Node Biopsy, had simple mastecomy, pathology showed no remaining cancer cells. Had 4 cylces Cytoxin/Taxotere (every 3 weeks) and finished Dec 11. (No radiation) To be honest the chemo kicked my butt. But I too am in my sixties and many on this board are much younger and I think perhaps that makes a difference although it's all miserable. But although I was never nauseated or vomited I had the big "D" practically the whole time. I got some dynamite pills from the Onc, Lotomil (not sure of spelling and the Rx is upstairs) and that stopped it. You may or may not have side effects but it's only 12 weeks and we can do anything for 12 weeks. I am hoping you feel great.

    Regarding the TNBC there is a thread that should only be 1 or 2 pages back that has a terrific article on it. It is an agressive cancer but it responds very well to chemo. At first I was terrified of it but I Googled and got a lot of info and now I don't regard it as the Boogie Man of bc. And the good thing is we don't have to take Tamoxifan for 5 years!

    I am so sorry you are facing this again, once should be enough. But I am sure you will notice things have improved over ten years and the drugs to counteract side effects are pretty good. You can do this and this will be over by springtime!

    Hugs, Judy :-)

    Thanks, Judy
    Hi, just read your posting, and am comforted by it. Since we are both "boomers" I'm sure you can understand my apprehension on having chemo (again). The choices are few, however so that made it easier. I will begin chemo on 2/1/10. I will brose this site for info and strength..so glad I found ya! Darlene
  • Darlene_Mays
    Darlene_Mays Member Posts: 20
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    Moopy23 said:

    Darlene
    Hi, Darlene, I was treated for triple negative breast cancer last year. Had mastectomy, then chemo, and finally, radiation. The chemo I had was 6 rounds of TAC, one chemo infusion every three weeks. TAC is: taxotere, adriamycin, and cytoxin. It sounds like that is what you will be getting. I can assure you chemo is very do-able. For every side effect, there is something that can be done to help.

    One big thing you can do is research this board. The wealth of wisdom, experience, and compassion that I found here helped me through every step of my treatment. My husband and I found a lifeline in CSN and its members. You will, too. You can also research past posts. Just enter a key word in the Search feature at the top right of the main page. Or, post your question.

    As for TNBC, you will find several women diagnosed who post here. Beware what you read, get the best care you can, and have faith. You can make it, Darlene. You did once, and you can again.

    My best to you.

    Hi Moopy23
    I have read so many of your postings, both by you and your husband. You're a lucky woman! I, too, have a wonderful husband and family, and although I hate to call upon them for this type of support, I know they are all there. I believe I am going to have the same chemo that you did, and it will begin 2/1/10, I postponed it from Jan 25th, because we are having a baby shower for my daughter in law on Jan. 31st, and I just wanted to be able to enjoy that afternoon, and I hope the few days won't matter. Will check in again! Darlene
  • Darlene_Mays
    Darlene_Mays Member Posts: 20
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    didn't notice "old" posting
    Thanks for pointing out the fact that I respnded to an old posting,and thanks, too for responding. Looking forward to checking in from time to time for some comfort and support during the next few months....or more.
    Darlene
  • Aortus
    Aortus Member Posts: 967
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    didn't notice "old" posting
    Thanks for pointing out the fact that I respnded to an old posting,and thanks, too for responding. Looking forward to checking in from time to time for some comfort and support during the next few months....or more.
    Darlene

    Actually...
    I'm glad you did respond to the old posting, Darlene. Moopy and I both routinely scan for posts referencing TNBC... and what should we find but our dear friend Mimi's first ever post from December 2008.

    This was a lucky find. Understandably, Mimi was very shaken up; Moopy was dxed about the same time and I know for a fact that *our* world had gotten knocked out from beneath us.

    But in the year or so that have passed, Mimi has not only gotten through an aggressive program of chemo and radiation (and she had to fight some really nasty side effects), but she has also gotten on with her life. She has become a learned and compassionate counselor to her sisters in pink, especially her fellow TNBC survivors. She has been aggressive in her efforts to keep off recurrence. She has earned a promotion and a great big raise at work. Most impressively, she has even danced on the tables at Willard's Hotel in Washington, DC (you'll have to ask Mimi herself about that).

    The point is that the nervous young woman from December 2008 got dxed, fought bravely through her TNBC treatments, and is now back full force, cancer free and badder than ever. The same can be said of my beloved Moopy, who is at work unleashing her inner saleswoman even as I type, and driving me berserk with travel plans and honey-dos once she gets home. I'm praying for another 30 years of being driven berserk.

    Where Mimi and Moopy are today, you can be too. And you will be there, this time next year. Stick around, ask questions, share experiences, vent, whatever. You couldn't have invented a more engaging and supportive group of comrades.

    God Bless!
    Joe
  • ConnieRB
    ConnieRB Member Posts: 3
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    Triple Negative Breast Cancer Survivor
    I also have Triple Negative Breast Cancer. I finished my treatment on October 15 2009. TNBC is more agressive that a breast cancer that is receptor positive. TNBC has a higher percentage rate (32%) of return in a 3 to 5 year period that a receptor positive breast cancer (5-15%). The chemo mix is the same for both both breast cancer. I did very well through the treatment but my side effects after have lead to arthritis in most of my joints that does come with pain. I noticed this joint about a month and a half after chemo was complete. My Oncologist said discomfort after chemo is normal but the level of pain I have is not normal. I survive on pain killers for the arthritis and I have a full body scan scheduled to see what level the arthritis is at, or if it may be something else. Will keep posted on this.
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
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    ConnieRB said:

    Triple Negative Breast Cancer Survivor
    I also have Triple Negative Breast Cancer. I finished my treatment on October 15 2009. TNBC is more agressive that a breast cancer that is receptor positive. TNBC has a higher percentage rate (32%) of return in a 3 to 5 year period that a receptor positive breast cancer (5-15%). The chemo mix is the same for both both breast cancer. I did very well through the treatment but my side effects after have lead to arthritis in most of my joints that does come with pain. I noticed this joint about a month and a half after chemo was complete. My Oncologist said discomfort after chemo is normal but the level of pain I have is not normal. I survive on pain killers for the arthritis and I have a full body scan scheduled to see what level the arthritis is at, or if it may be something else. Will keep posted on this.

    Sending Good Thoughts and Best Wishes
    ConnieRB, wishing you good results on the bone scan(arthritis only!). Darlene, I remember very well my first chemo treatment, a year ago Jan. 8. The first was the worst, just because it was the first and I did not know what to expect. I and all of us I am sure will be ready to answer any questions you have, and keep you in our thoughts on your first day. You can PM me if you would like.
  • mimivac
    mimivac Member Posts: 2,143 Member
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    Hello Darlene,
    As you can see there are several TNBC survivors on this board. Any cancer diagnosis is scary, but this one has received especially negative press lately. But my friends Aortus and Moopy are right: chemo is do-able and this disease is definitely survivable. In fact, chemo works best on the aggressive tumors like triple negative ones. And there's even a positive aspect to having hormone receptor negative cancer: after a few years your recurrence rate goes down drastically. Moopy and I were diagnosed at around the same time and went through the same kind of chemo. I can't say we had a ball through chemo and radiation, but we made it through with flying colors. Now, we are 14 month survivors and going strong. Moopy brokers high-powered deals at work every day, and I, well, according to Aortus, I spend my time at hotel bars. The point is, we are living our lives and thriving.

    You will get through the chemo. Feel free to ask any questions.

    Mimi