Herceptin or no Herceptin?

Options
Vavoom10
Vavoom10 Member Posts: 60

Hi everyone:

I am currently waiting to find out if I am HER2 or not.  If I am, my Onc wants to put me on a year of Herceptin after my chemo treatments.  From what I have read about this drug, it is worse than chemo.  I have decided that even if I am HER2 I don't want to do this.  Any thoughts pro or con?

Comments

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited February 2009

    Well ultimately YOU are the one who gets to decide..  Herceptin for HER2+ breast cancer has saved or extended thousands of lifes thus far!   It can be tough on the heart, but so can chemo - perhaps if you are wanted to reduce risks you might ask your oncologist (if the test comes back positive) if you can eliminate the chemo?  I would put my trust into the drug that most directly effects my tumor if I was going to limit my treatment - and I would put my life into the hands of Dr. Slamon producer of the drug Herceptin in a blink of an eye - he fought for women/men with bc for years when it really was on the back burner for many.  But please remember you have put your comment up into the DCIS board and honestly it's a bit easier for me (if anything is EASY in this cancer thing - my dx was true DCIS) as our risk are lower than yours.. Good luck and I wish for you much good health in the future!

  • azsunn
    azsunn Member Posts: 201
    edited February 2009

    I had minimal side effects with Herceptin, and am immensly glad to have the benefits of it.

    Only you can decide what is right for you.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2009

    You may want to post this question in the "Hormone Therapy" and/or "HER2/neu Positive Breast Cancer" forums - you'll find lots of women there who've had to make the decision about Herceptin.  Because Herceptin is not approved for women diagnosed with DCIS, you won't find many women here who have any experience with this drug or even who've had to make this decision.  But you'll get lots of relevant advice on the other two forums.

  • Maire67
    Maire67 Member Posts: 768
    edited July 2010
  • roseg
    roseg Member Posts: 3,133
    edited February 2009

    I agree that you are in the wrong forumn.

    But everything I've heard about herceptin is that it's pretty easy to tolerate and very effective against her2+ cancer, which is aggressive.

    Wait for the results to make up your mind.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Worse than chemo? Did you read this from people who have had Herceptin therapy, or from some other kind of source?

    On chemo, I lost my hair, lost my appetite, lost weight, lost energy, my legs hurt and swelled, my butt hurt, my mouth hurt, my nose ran constantly, and other stuff I'm sure I've forgotten (mercifully).

    On Herceptin ... nothing. No side effects. Oh, ok, my joints hurt, but that's not clearly linked to Herceptin. Could be long-term chemo SEs, could be age and heredity.

    What terrible things are supposed to occur from Herceptin that you have read?

  • mke
    mke Member Posts: 584
    edited February 2009

    Probably the wrong forum, but I too am curious about what side effects of herceptin are worrying you.   It certainly can adversely affect cardiac function, actually my results improved over the course of treatment.  It did give me a runny nose, which is pretty common.  The first treatment I felt a bit feverish but that was the only time.  I'm inclined to blame it for a deterioration in vision, but that is probably just denying age.

  • Navalex
    Navalex Member Posts: 19
    edited February 2009

    I was diagnosed in 2006 with DCIS HER2neu/er+, stage 1, and had a lumpectomy, then mastectomy. Making a decision on what treatment you want can be overwhelming when you are concerned about cancer. LJ13 is expressing the same thing that I was thinking when I saw your post: "Where are you getting your information from?"  I once had a doctor that I worked for tell me "If you read about all of the side affects that an aspirin can cause, you would never take another aspirin again in your life!" I still take aspirin - and I am still alive. The point is this:  The side affects listed in the pharmaceutical information on Herceptin tells you what the possible side affects are, which doesn't necessarily mean it will happen to you.  I recieved Herceptin while simultaneously being treated with Taxol and Carboplatin. My Herceptin treament ended in May of 2008. My decision to move forward with these drugs was based on 1) getting a second opinion, 2) reading the pharmaceutical information on each drug & writing down the questions that I wanted to ask my doctor, 3) and speaking with other women who have been through this regimen. Any side affects that I experienced were very minor with the exception of an infusion reaction (it was adminstered in 30 minutes instead of an hour-read the "Infusion Reaction" paragraph of the pharmaceutical information). My heart function rebounded and is actually in the 'normal' range when it wasn't before I started treament. Any minor side affects that I had have gone away. I'm with LJ13 - Herceptin is a breeze compared to chemo as some chemo drugs permanently cause damage to the heart. At least with Herceptin the odds of your heart function rebounding is good and you will have given yourself a better chance of survival. I am continuing to exercise without problems and am comfortable with the thought that I have given myself every opportunity to be a survivor.  I wish you the very best in your decision making and good health.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2009

    Navalex,

    You mention that you had DCIS but were Stage I.  In order to be Stage I, you must have had invasive cancer as well - DCIS alone is always Stage 0.  It is quite common to have both DCIS and IDC together, but when that happens, the staging is based on the amount of IDC; the DCIS, as the less serious condition, becomes incidental.  So this means that your treatment - and the fact that you were given Herceptin - would have been based on the fact that you had HER2+ IDC. 

    Given all the discussion above about DCIS and Herceptin, I just wanted to clarify this for the sake of the DCIS women.  It is great to hear that you made it through your Herceptin treatments so well.  Congratulations!

  • Navalex
    Navalex Member Posts: 19
    edited February 2009

    Beesie,

    I am sure you mean well and I appreciate what you have offered. I noticed that you post on these forums frequently and others who read your advice probably feel the same way.  I am a little uncomfotable when I see people responding to what you are offering as if it were serious medical advice. Each persons circumstances differ significantly and only experienced oncologists with that person's medical information, test results, genetic data, and other specific information should render advice that is to be taken seriously.  I am a big advocate of people coming together in these forums to share experiences and emotional support.  However, many of the people here are facing extremely tough decisions where the information they have received does not take their personally relevant factors into account, which could lead them into a decision that endagers their health. Even if we refer people to their doctors in these forums, doing so after having given information or advice that may or may not be entirely factual or relevant to their specific case could give that patient false hope or fear.  I truly appreciate your obvious care for the people here in this forum, but would suggest when offering advice that an emphasis on personal experience and emotional support is offered rather than what many may interpret as as hard medical facts and advice that is fully relevant to their cases.

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited February 2009

    Hi MI - I read ALL the threads (I use the Active Topics button) so I stumbled across yours. I've been on Herceptin since April of '08 (only two more months to go - yay) and I have had very little side effects, if any. The Navelbine I took for four months was considered "mild" chemo - but wow, that was enough for me! My hair got thinner (but I didn't go bald) my veins and arms hurt, I had diarhea and my fingernails were ruined. Since then, I've returned to my normal self - my hair is thicker, no more pain or diarhea - my fingernails are still not normal, but much less painful. My heart function decreased only slightly - my muga score started at 67% and went down this past month to 64% - really nothing. I'm so grateful that this drug was made available to early Stage 1 patients like myself - it gives me so much confidence that I'll be dancing with NED for the rest of my life, God willing! I hope you'll get better information about Herceptin - it is NOT "worse than chemo" - I hope your oncologist didn't tell you that, I'd be SHOCKED! Surprised

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited February 2009

    Navalex, what is it specifically that bothered you about Beesie's posts?  I have gone back over them several times now and can't find anything that would be a directive to another person - this is a support arena and anyone who comes here knows (or should know) that the main portion of bc.org clearly states the medical standards of care - if that is what they need.  Although many of the women come here because they are confussed (myself included when first dx'ed) - I don't find anything that might even suggest Beesie is putting her voice where an oncologist's should be (or any other doc for that matter).  I appreciate her voice very much and find it to be well informed, caring and sometimes clarifing.  So what shouldn't she say?  And please know this is asked with the best of intent, I truly don't understand your concerns!  Best

  • PSK07
    PSK07 Member Posts: 781
    edited February 2009

    Navalex

    Sometimes factual stuff helps. We try - in all the discussions - to emphasize that personal experience is just that - personal.  The factual info from papers/studies/publications plus medically-accurate websites helps us in other ways.

    For all of us, understanding standards of care is important. The personal is nice, but seriously - if misinformation is given, then gently refuting with factual backup is incredibly important.

    If one gave a casual read, one would assume that the standard treatment for DCIS and LCIS is bi-lat mastectomy. One would assume that all biopsies are found to be malignant. In reality, neither are true. There have been women worried - terrified - that their DCIS would turn into Stage IV. It's important to know the medical rationale why that is probably not going to happen.

    Few of us are doctors or medical professionals. Some of us rely on anecdotal information, some of us look for facts. I, for one, appreciate both sides. 

    One of my personal bugaboos is seeing a dx of DCIS or LCIS with something besides Stage 0 next to it. Or it being presented as irrefutable fact that mastecomy is always appropriate and necessary. Or lumpectomy is always appropriate and necessary.  Even that one has to have radiation and/or tamoxifen. But eh. Seeing in black and white, the NCCI (or is it NCCN?) guidelines or a published study is as vital as a personal reflection.

    I would hope that no one would look at BC.org and take my experience as the be-all and end-all of DCIS/LCIS/ALH. It is simply a jumping-off point for discusson with docs.

    take care

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2009

    Navalex,

    One of the things that I usually try to do in my posts is support whatever information I provide with links to medical studies and/or reliable breast cancer websites so that people can read the information for themselves and make their own decisions.  And although I provide general information about whatever the topic may be (supported by the medical links), I usually try to remind women that they have to check with their surgeon or oncologist to get the specific information about their situation - every case is different.  I certainly don't want anyone to think that what I am saying is medical advice and I wouldn't want anyone to make a decision based on what I'm saying.  I suppose like so many others here I could instead simply offer personal anecdotes about my treatment but the fact is that I usually don't consider my personal experience to be particularly relevant to what someone else is going through and I'd rather try to direct someone to information that is relevant to them.

    One other thing that I do is try to ensure that whenever treatments are discussed, the information is put in the context of the diagnosis.  Most of us know little about breast cancer diagnoses and treatments when we are first diagnosed.  I sure didn't know much.  So someone with DCIS might not fully understand the difference between DCIS and IDC, and someone with IDC might not understand how DCIS differs from IDC.  Because of this, if someone with IDC posts in the DCIS forum and talks about treatments that are not appropriate for someone diagnosed with DCIS, treatments such as chemo and Herceptin, it might lead some women who are newly diagnosed with DCIS to believe that they are not getting adequate treatment because these treatments were never mentioned to them.  In fact I know this is the case, because I've seen happen - quite a few times. 

    So in the case of this discussion thread, since this is the DCIS forum, when Vavoom initially posted about Herceptin, rather than offer any advice (which I am completely unqualified to do), I tried to direct her to other forums that might be more appropriate. And because you mentioned that you had DCIS and took Herceptin, I thought it was important to clarify that in all likelihood you were given Herceptin because you were Stage I - in other words, you had IDC along with your DCIS.  The fact is that Herceptin is not approved for women who have DCIS only.  And the NCCN treatment guidelines (which are the guidelines supported by the American Cancer Society and used by most doctors in North America) do not make any reference to HER2 status or Herceptin for women who have DCIS.  Since this is the DCIS forum, I think it's important to clarify this for women reading this forum who are newly diagnosed with DCIS.  I'm sorry if you took offense at my clarification of your situation - and I can appreciate why you did - but I think it's important that women with DCIS understand that Herceptin is not a treatment which is given to those who are Stage 0 (pure DCIS).  

    Deirdre and Pam, thank you! 

  • co1214
    co1214 Member Posts: 11
    edited February 2009

    When I log in to the discussion boards, I read all of Beesie's new posts, and although I know she is not a doctor, her comments always are clear.  (A lot of times more clear than some physicians' explanations.)  I don't think I've ever come across anything questionable in any of her posts.   

    From this site where the diagnosis of DCIS is explained, it clearly states that if one is diagnosed with DCIS and later an invasive component is found, the diagnosis changes to invasive cancer:  

    It's important to remember that a diagnosis can change from the first biopsy to the final surgery. For example, the first biopsy may show just DCIS. Later biopsies may show an area of invasive cancer (not just microinvasion). When both DCIS and invasive breast cancer are present in the same cancer, the cancer is considered invasive. The DCIS part of the cancer should also be described in the pathology report, but it becomes less important than the invasive cancer.

    In this case, the treatment plan would be for invasive cancer.

    Beesie, thanks again for all your wonderful posts.  You've kept me straight for the past nine months!

  • louishenry
    louishenry Member Posts: 417
    edited February 2009

    Same goes for me,  Beesie. You have been so helpful with my DCIS questions. And alot easier to get a hold of than my docs.  Nada

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2009

    Nada and co1214, thank you both!   I know that often my posts can be overly detailed and analytical but that's just how my mind works - it's how I think.  I can't change that.  That approach doesn't work for some people but it's always nice to hear that it can be helpful for others.  I will also say that I really do worry and find it uncomfortable when I post contradicting or questioning what someone else said, but in the end I usually think about what Pam said, "if misinformation is given, then gently refuting with factual backup is incredibly important" and I decide to press the 'submit' button on the post.  I really wish that the medical profession was better at explaining all these things so that everyone who came here understood their diagnosis, their risks and the role of each type of treatment in their overall treatment plan, but unfortunately that's not the case.  So while as a layperson I don't think that it's appropriate to offer medical advice, I do think there is value in sharing both our personal experiences and our learning about breast cancer risks, tests, treatments, etc..  I've noticed recently that there are quite a few others who seem to share my concern about the misinformation that's out there and who also try to ensure that the correct facts about breast cancer are communicated.  I'm glad to see that and I thank all those others.  I believe that everyone needs to have accurate and correct information in order to make the decision that's right for them.  

  • Vavoom10
    Vavoom10 Member Posts: 60
    edited February 2009

    Thanks all for your comments!  I have not been on a while as my chemo treatments keep me out of commission for a few days.  The information I got on herceptin was what I read about on the info pamplets I was given.  I was fearful of the side effects it mentioned, even causing death upon infusion.  I was personally worried because I am hypersensitive to medication of any kind.  If it has a side effect, I usually get it and that scared me.  The side effects of chemo scare me. 

    But, I did find out that I am NOT HER2 positive, so that is one less drug I have to worry about.

    And please forgive me if I end up in the wrong forum, I'm still trying to find my way around in here!

    I have found these forums very insightful, thank you all for responding to my question.  The main thing I was thinking about when I posted this question was the weight and alcohol factor because things I have read and things I have been told by doctors suggest that being overweight and drinking plays a factor in breast cancer development.   What I am reading about and seeing though is that there a lot of healthy slim people who get breast cancer. 

    I have never heard about the left breast cancer thing until my question was posted.  Again thank you all for responding!  This was interesting.

  • airstriptrip
    airstriptrip Member Posts: 13
    edited April 2019

    I did the chemo but not the herceptin. ended up with neuropathy in my hand and feet. they still are pushing to do the herceptin but I understand it's only a 6%.

  • airstriptrip
    airstriptrip Member Posts: 13
    edited April 2019

    I did the chemo but not the herceptin. ended up with neuropathy in my hand and feet. they still are pushing to do the herceptin but I understand it's only a 6%. My diagnosis was DCIS 1 cm with clean margins Her2+. I ended up doing the chemo taxol with herceptin for 12 weeks.

Categories