Anyone choose not to do chemo?

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RJ62
RJ62 Member Posts: 58
Anyone choose not to do chemo?

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  • RJ62
    RJ62 Member Posts: 58
    edited March 2008

    Hi all. I was wondering if anyone has chose/chosen not to do chemo being trip neg. Here is a brief run down on my past.

    DX'd 2000 38 yrs old left side IDC trip neg, 4cm tumor, stage 2, grade 3, 2 out of 5 nodes pos. mast, chemo, rads.

    8 yrs clean Woo HooLaughing

    DX'd 2008  46 yrs old right side (other side) IDC triple neg, 1.5 cm tumor, stage 1, grade 3, mast, waiting on results of SNB. Also waiting on reslults of BRCA testing

    I am thinking of not having chemo if my SNB comes out neg. Doc said they looked good and healthy at time of removal). I know most trip negs are destined to have chemo but I don't know if I want to go through it again. Is there any triple negs out there that have chose/chosen not done the chemo and how are you doing?  

  • NarberthMom
    NarberthMom Member Posts: 615
    edited March 2008



    Before you decide against chemo, you should think about a couple of things:



    With triple neg, the only fight we have is chemo. And, cancer can travel through the bloodstream in addition to the lymph system.



    In addition, the anti-nausea drugs are much, much better than they were 8 years ago!



    Hugs,

    Hillary

  • slanderson
    slanderson Member Posts: 152
    edited March 2008

    I don't think you will find many triple neg's who didn't do chemo, especially as young as you are.  I mean, just think, it worked the last time, right?

    It's your choice, but I would urge you to do it.

    Shannon

  • StefS
    StefS Member Posts: 157
    edited March 2008

    As previously stated, chemo is the only meds that triple-negs have. Plus, chemo works really well on triple-neg. So sorry you ended your dance with NED. But that is just an interuption.

    ((Healing hugs to you)) 

  • RJ62
    RJ62 Member Posts: 58
    edited March 2008

    Thanks all for the advice. I am leaning towards chemo. Just scared right now in having to do it again.

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited March 2008

    It's understandable that you are scared to do chemo again.  But you can beat it again. 

    Teresa

  • chumfry
    chumfry Member Posts: 642
    edited March 2008

    I had a 4.5 cm triple-negative tumor in 2005 followed by a 1.2 cm second primary (also triple negative) in my other breast in 2007. I had mastectomy both times, so no rads. Onc said I was "young," and insisted on chemo both times. (I turn 50 this summer.)

    Chemo in 2005 was four rounds of AC (every other week), followed by four rounds of taxol. Chemo in 2007 was 12 weekly rounds of carboplatin and taxol. The weekly chemo was MUCH easier on me than my 2005 regimen, because each week's dose was less than what you'd get on an every-other-week schedule.

    Even in 2005, I only threw up once. Had a lot of aches and pains and fatigue, but it was all manageable. I was terribly afraid of having to have chemo again, but you slog through. In fact, I think it actually was easier the second time because I was more familiar with it.

    My onc gave me no options re skipping chemo. I think I went at it like, "Well, if I did it once, I can do it again."

    --CindyMN

  • RJ62
    RJ62 Member Posts: 58
    edited March 2008

    Thanks all for the encouragement. I got the results of my SNB today. Guess what....... I am positive. So there is no choice now, I will do the chemo. Weekly doses sound better and I hope to work through them. Thanks again everybody.

  • Nanahanan
    Nanahanan Member Posts: 1
    edited May 2013

    Stage 2 grade 3 lumpectomy, have chosen not to undergo any further medical treatment. now one month after lumpectomy. 

  • Regia7458
    Regia7458 Member Posts: 1
    edited May 2013

    Tnc stage 2a has not spread to body. Port blocked at first infusion; after doctor approve intravenously which require my approval, I am hesitant now to do it. Nurse explained that any liquid that will spill out of vein will destroy the surrounding skin. Even 1 drop. I refused treatment intravenously.

  • Luah
    Luah Member Posts: 1,541
    edited May 2013

    regia: What about a PICC line instead of a port? This is very commonly done in Canada; you have to be careful not to get the area wet, but other than that, it's not inconvenient. 

    Alternatively, talk to another doc or chemo nurse about intravenous... it can and has been done, but probably requires a highly experienced hand. Or ask about alternative chemo (it's adriamyacin that's highly toxic).

  • Linda2907
    Linda2907 Member Posts: 1
    edited June 2013

    I have chosen not to have chemo. The oncologists were very persuasive and determined to treat me, but I'm just not doing it. I have been diagnosed with triple negative breast cancer. I'm 55. Stage 1a, grade 3, 1.6 cm, zero margins, zero nodes.

    The chemo oncologist said I had no choice and I would have 16 weeks of treatment. I do have a choice, and I choose no. The department head came to see me and said that chemo is the standard of care for TNCB, and she didn't understand why anyone would decline. I could go into all my reasons, but that would be boring. It's not my goal to try to convince anyone to agree with me, I'm just reporting my decision in this thread. 

    I will be having radiation. I had a CT scan and the radiation oncologest prescribed 16 regular treatments plus 4 intense (high dose) treatments. This is the minimum radiation that was on the table. She did not believe I needed more.

  • grateful29
    grateful29 Member Posts: 3
    edited July 2013

    Hi, this message is for Linda2907.  You said to list all the reasons you are not doing chemo would be boring.  Not to me I would love to know.  I am 48 and was diagnosed in April with Tnbc, stage 1A, clear margins , clear lymph nodes.  I had a lumpectomy and have done 4 rounds of AC due to do 4 rounds of Taxol.  Seriously considering stopping now because I did not have the courage at the beginning to do what you are doing....but I wanted to. 

  • TeeDills2013
    TeeDills2013 Member Posts: 11
    edited July 2013

    Linda2907 I'd like to hear your reasons, too. I am like grateful29 - 47, diagnosed in april stage 1a clear margins clear lymph nodes. I had a lumpectomy and have had 3 rounds of TC with 3 more to go. There are days I would like to stop now. No one wants to hear me say it, but that's how I feel. It's comforting to know I'm not alone.

  • grateful29
    grateful29 Member Posts: 3
    edited July 2013

    Hi TeeDills2013, I think I have made my decision.  Just finished 4 rounds of AC am going to do the next 2 rounds of dd Taxol and that is it.  I am not doing the last 2.  I am also talking to my surgeon and want a bi-lateral mastectomy done.

    Unfortunately, the chemo has taken such a toll on my body I have a lot of concerns about what side effects I will possibly live with forever.  I feel I have done my due diligence as a preventative measure by doing the six rounds instead of 8.

    I want to get my body back healthy and strong.  Just wanted you to know you are not alone.  As I keep hearing....you know your body and you have to do what is best and feels right to you.

  • TeeDills2013
    TeeDills2013 Member Posts: 11
    edited July 2013

    thanks, grateful - I will have my 4th dose of TC on Wednesday. I see my MO on Tuesday and will talk about 4 versus the original plan of 6. You are right, we do know our own bodies. I feel as though I have physically aged 10 years, lost all muscle tone and with the fatigue wonder if I will ever get back to being half as fit as I was. 

  • grateful29
    grateful29 Member Posts: 3
    edited July 2013

    Good Luck TeeDills...had first round of taxol yesterday.  Spoke to my onc. and obviously she doesn't agree with my decision of 6 in total versus 8 but seems to understand.  She did tell me by doing at least the 1st 2 rounds of taxol I am getting really the most out of it.  Personally I think the last 2 are just to cover protocol.  Not everyone fits into the same box.

    Interesting I just received an article from the cancer centers of America.  There is a big forum being held in Chicago end of this month to discuss more pinpoint and tailored treatments using genetics and dna testing.  The best part is that the reason they are doing this is because of the concern of the high levels of toxicity of chemo treatments being given which might not be always necessary especially in diagnosed early stage cancers.  Apparently the long term effects of these high dosages of chemo are beginning to be somewhat more concerning than the possibility of recurrence.  In Europe they take a much more wait and see and monitor closely approach using genetics and dna testing.

  • anamerty
    anamerty Member Posts: 195
    edited July 2013

    Just curious I had 3 of 4 tx of tc had an alergic reaction after 3rd so it was stopped due to 2 weeks in hospital with chemo caused pneumonia I can say for me it has aged me too and 8 months after my last chemo I still have hand and foot syndrome and it is very dibilitating.if the spot they found turns out to be mets im not sure I could do it again, but then right now there isnt any other tx for tn

  • gonegirl
    gonegirl Member Posts: 1,871
    edited July 2013

    They can test your cancer against various chemos to see which work best. My cancer spread by bloodstream and I was stage iv from start. Chemo saved my life. I can build my strength back up but can't get my life back, if I die.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited July 2013

    Okay, I hope it is okay if I jump in here.  I was Triple Positive.  I write a Breast Cancer Blog and hear from ALOT of Trip Neg women.  The most interesting thing I find is that some have amazing results with AC and with others, it doesn't work.  But the ones where the AC didn't work, have amazing results with Taxol.  I am finding this more and more after hearing from many, many women.  Just observation.

    Okay chemo toll on body.  I had an AC heart attack.  I didn't know it.  Thought it was side effects.  I was 55 yrs old at the time and in good health other than BC.  Never had any heart issues.  That being said, I am now 13 months out from Chemo.  I have made a comeback.  With medication, exercise and cancer rehab, I have really turned around.  I went from feeling 85 years old back to my age.   Don't get discouraged.  Your body will come back!!  Again, I have heard from HUNDREDS of women.  Most of them get better.  But it takes time, time, time.   

    Sending encouragement!    Denise

  • Luah
    Luah Member Posts: 1,541
    edited July 2013

    Yeah, I feel a need to jump in too. I respect that each woman can and should make her own choices, but the research/analyst junkie in me desperately wants those choices to be at least primarily evidence-based, especially when it comes to matters of life and death.

    It's a fact that AC works wonders on some TN tumours, and not on others. It's a fact that Taxol has been highly effective for some TN tumours. This is why oncs, depending on the women's pathology (size of tumour, lymph node involvement, age etc.) like to throw both heavy guns at TN.

    With concern and respect, grateful29, I don't know your situation, but it appears that your decision to go with 2 taxol instead of 4 appears a bit arbitrary, based on your reaction to AC. Many women (myself included) found that taxol was far easier on our bodies than AC. It may be the case for you too. I am wondering, what is the downside of waiting and seeing how your body responds.. and then deciding? You may conclude that two more treatments and four weeks (and risk of side effects) is a relatively small price to pay for, potentially, a long natural life-time to come. And however your treatment turns out, I wish you well. 

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