Herceptin or no Herceptin?

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.

.

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?

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,

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.

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

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! 

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

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.