Herceptin - making the decision

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Dakini51
Dakini51 Member Posts: 7
edited June 2014 in HER2+ (Positive) Breast Cancer

I am a new cancer patient - had a lumpectomy on 11/24, just found out yesterday that I am HER2+.  I am an alternative health kind of gal, and while grateful to have choices, I am very skeptical of pharmaceutical companies and their hype.  I am also having a hard time adjusting to working with medical professionals, many of whom are wonderful people, who have such a totally "un-holistic" perpsective.  Like preventing recurrence by taking a drug that might well give me congestive heart failure when I currently have a healthy, happy, functioning heart?   I am wondering if others have this perspective, and can give me some information on where to find balanced and un-biased information and discussion from a more holistic perspective. Thanks, and many blessings!

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  • InTwoPlaces
    InTwoPlaces Member Posts: 354
    edited December 2010

    I think you will get more responses if you post this in the forum "Alternative, Complementary & Holistic Treatment".

    The most people on this thread sees Herceptin as their life saver...I am one of them!

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  • Twinmom77
    Twinmom77 Member Posts: 303
    edited December 2010

    So sorry you have to be here but yes, there's lots of info in the Alternative thread.  Although I was strictly alternative oriented when I was diagnosed, I did end up doing chemo with Herceptin and rads and then returned to alternative treatment instead of Tamoxifen.  I worked with a Naturopath throughout everything and he had me on lots of supplements and a nutrition regimen that really cut down on side effects and protected my body and heart.  I had no problem with my heart during Herceptin, and very few side effects none of which were lasting.  I don't want to write a big long boring message here about everything I did so feel free to PM me and definitely check out the Alternative thread.

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  • Dakini51
    Dakini51 Member Posts: 7
    edited December 2010

    Thanks. I am new to this site and just trying to find my way around!

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  • Dakini51
    Dakini51 Member Posts: 7
    edited December 2010

    Thanks - I feel okay about choosing anything that makes sense to me, given my diagnosis.  I just like to have lots and lots of info from all angles!  Hope you are doing well, and thanks again for the info.

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  • misfit
    misfit Member Posts: 60
    edited December 2010

    If I remember correctly the cardiac side effects of Herceptin are largely reversible, it's those of anthracycline chemotherapy that are more concerning. Sorry that you had to join us, but welcome and good luck.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Hey - another triple positive ILC - welcome to the club, there aren't many of us as you will see.

     Because you have no positive nodes, they should recommend TCH. I didn't want AC-TH due to the side effects of Andriamycin and my onc agreed and said he only gives it to node positive patients.

    I am about to have my last herceptin treatment and my heart is fine. I just had my (hopefully) last echo yesterday and will get the results today.

    Herceptin is the miracle drug for HER2 and a very doable treatment. Once you get through the chemo part, the herceptin for the rest of the year is easy.

    We are very lucky that this treatment is available to us and not so long ago it wasn't given to early bc patients - probably the reason why so many people had recurrences.

    Sue

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Also, make sure you get a portacath put in for your treatment - makes life a lot easier given the number of treatments.

    Sue

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  • flash
    flash Member Posts: 1,685
    edited December 2010

    Sorry you had to join the BC club.  I'm one who did the herceptin route.  Part of why I decided to do it? I researched the stats on her2 + recurrence without herceptin and then looked at the recurrence rate with herceptin.  It convinced me that it was worth all the chances and money.  You do have to do some digging to get the info and I wish I had saved all the links but I would say go diggin into the research, look at the stats and make sure you check out how the study was done, exclusions, inclusions and statistical significance for all of the info.  Being a sceptic is a good thing but you really have to do the research and then make the decision for yourself and your personal situation.  I can say I did have the complications of herceptin including the ejection fraction problem but it did reverse and I did keep on with the herceptin to the end.

    good luck

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  • lago
    lago Member Posts: 17,186
    edited December 2010
    misfit wrote:

    If I remember correctly the cardiac side effects of Herceptin are largely reversible, it's those of anthracycline chemotherapy that are more concerning.

    This is correct. Also you may want to look at the studies. It can happen but most of the time does not. 

    I'm a triple positive IDC. Just had my 4th tx of THC. So far my heart seems fine. 2 tx more to go.

    I'm not sure at your stage with no nodes if Herceptin is a given. Personally I think it should be but I don't know if that is the standard protocol for Stage 1, no nodes, Grade1.

    Have they done a FISH test for HER2? It's more reliable. Usually HER2+ is a higher grade and not lobular but it does happen.You just want to make sure because if you do decide to go this route you shouldn't take a drug you may not need.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2010

    Daikini, i would bet that most people on this thread have chosen to take Herceptin.  I did and I found it very doable.  Be aware, they will not give Herceptin alone and you will need to take a chemo with it.  

    The first thing I would suggest is to learn more about HER2.  It is a very agressive cancer.  Ask your oncologist what the recurrence rate would be with and without Herceptin.

     Be sure to post on the alternative medicine site -- there will be lots of information there and many liked minded people there.

    Good luck. 

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  • Drim
    Drim Member Posts: 302
    edited December 2010

    I have IDC w/lobular features, not ILC but I am also triple positive, stage 1, grade 1. After reviewing the herceptin studies, there was no question in my mind this was the route to go for me. As Cowgirl says, herceptin is very rarely given without chemo but with a stage 1, grade 1 small tumor you may be able to get something like taxol/herceptin or taxotere/cytoxan x 4 with the herceptin, instead of some of the harsher treatements.

    For me herceptin has been a breeze. My heart is fine so far and I'm half way through. My only side affect seems to be a runny nose - most notably when going from inside to outside and vice versa. Otherwise nothing.

    I applaud you for wanting to take a holistic approach. You will definitely want to do all that you can do to stay healthy and strong during this time. There are many great threads on this board to help you along.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    My final echo results were perfect!!! No damage from the herceptin at all.

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  • Joannem65
    Joannem65 Member Posts: 14
    edited December 2010

    I too was worried about possible side effects however, I felt I needed to do everything to decrease my chances of recurrance.  I was 42 @ diagnosis w/ Stage II IDC and DCIS multifocal disease, ER/PR neg and Her2+++.  My oncologist described this as an buying an insurance policy - it provides a little extra coverage over chemo alone.  I also had a PURPLE POWER PORT which I suggest every patient looking at long term treatment ask about.  It offeres easy access and should you need any further CT scans they can power inject thru it.  (Mine was used too often, but Thank God it was there!)  In addition they can draw your blood thru it - much easier than venous sticks during / after chemo.   I am now 2 1/2 yrs from my diagnosis and NED.  Good Luck and I'll pray for all of you here for continued health. 

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  • ferretmom
    ferretmom Member Posts: 103
    edited December 2010

    I keep seeing posts that say Herceptin is only given with other chemos, never by itself.

    That may be true in Canada with their health care system. Here in the US, Herceptin is given by itself. I just had my 11th infusion yesterday. 

    I am  comfortable with my decision to forgo other chemo drugs, and my onc is OK with the decision for my particular BC.

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  • Leslie1962
    Leslie1962 Member Posts: 233
    edited December 2010

    I am HER2+ and I initially started Herceptin along with Taxol way back when. Once all the chemo was done, I have been getting Herceptin ALONE since April 2010. I get the infusion every three weeks and it is all I get. Heart function is monitored every three months, so far I am just fine. My last Herceptin will be sometime in February.

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  • Dakini51
    Dakini51 Member Posts: 7
    edited December 2010

    Thanks everyone for all your help - this is all good information for me.  My oncologist IS recommending Herceptin without chemo for me. He is also re-checking with the FISH test to make sure I am for sure HER2+.  I am 59 years old so maybe a bit more worried that my old bod might have more trouble with side effects than some of the younger folks.   I am lucky to have a daughter who is a research biologist - she really knows how to read the studies and knows which ones are the most reliable and well-done.  Thanks again, and hope you all are having a good week.  Blessings!

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    Dakini51 - I'm 58 and had my last herceptin this week - hooray for me - I have had absolutely NO trouble with SE's from it - the worst has been a very occasional drippy nose. Interesting some of your oncs over there are giving it without chemo - maybe you are about to become part of a study :)

    I am so glad you are going ahead with it. Also, I wish my pathology had been retested as your's is going to be. After I found out how unusual it is for lobular to be HER2+ve I really wondered if they had made a mistake. We are a very special bunch - 0.1% of breast cancer patients.

    You'll have to check out the ILC forum and introduce yourself.

    Sue

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