HER2+

barbiecorn
barbiecorn Member Posts: 437
edited June 2014 in Alternative Medicine

Is there anyone that has HER2+ and not done conventional medicine at all and just alternative medicine.  If so, can I hear from you.  I really am looking for long term as I need to make a decision about my course of treatment in the near future.  Thank you. 

· Share on FacebookShare on Twitter

Comments

  • maggiesuzanne
    maggiesuzanne Member Posts: 63
    edited February 2012

    A well informed decision could be made by good questions with your traditional medical team and finding a good naturopathic oncologist within a good integrative cancer system......that question is a good one that needs a real professional to help you.....the type of cancer, your age, overall health, and many other things are factors to assess........alternative and complimentary care is available but go to a reputable naturopathic oncologist that can give you fair and balanced opinions.....I recently switched to a conventional medical team that includes a naturopathic oncologist and oriental medicine....so I have a balance that feels safe and comfortable for me and I am not out there doing crazy things.....larger cities would have a good selection for you to get opinions....I hope this helps...Mine was diagnosed at late stage so the medical community nor the naturopathic community is responsible for my late stage...I am sure other ladies will jump in and help as this discussion unfolds.....

    · Share on FacebookShare on Twitter
  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

    If there is alternative to herceptin, I am interested. I forgo the chemo, but due to the aggressiveness of this type of tumor, I'm taking herceptin hoping my immune system killer cells will see the herceptin locked onto any possible micromets and kill it.
    I just don't understand why you have to do it for a year. It seems if you take it for 3 or 4 months it would had killed all abnormal cells with herceptin...at least for those who are early stage cancer.

    My alternative way in dealing with her2+ cancer is to build a STRONG immune system, which includes a good diet, and exercise (and hercepting for awhile).

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    Thank you Eveberry and Maggie...very good responses...I am going to a Holistic M.D. very good references and I am in contact with a neuropathic oncologist in NYC...I am doing the diet, exercise, etc. for now...I just had my BMX on 2/1 and am recouping from this but have appts. within the next two weeks for both reg. onc. to pick her brain...and other drs. following...I am early stage - no lymph node involvement - I am Stage 11a due to two facts - 1) my cancer was 2.6 cm instead of 2 or under.  I don't feel that 2.6 should make that much of a difference but that is how they do the staging and the fact that I am HER+.  My BS said the treatment would just be for insurance purposes only.  All my margins clear, etc.  My family history is not good for heart issues and I am a senior.  That is why I am holding off on Herceptin for now. So I am going the alternate route for now but never say never.  Thank you.

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    I started a thread called 'Breast Cancer and the Immune System," which talks about the fact that breast cancer is not an immunologic disease.  It might be helpful when creating a plan.  Just trying to build up your immune system is problematic because breast cancer has a way of cloaking itself and hiding from your immune system.  So you can have a great immune system, never get a cold, and still have cancer in your body.

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2012

    Good explanation, sweetbean, thanks.

    A.A.

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    From what I've read, in Finland they only give Herceptin for 9 weeks and it is working well...I think in England, it is six months....yes, why does the US do one year?  Who knows, they may change the time frame down the road..maybe??

    · Share on FacebookShare on Twitter
  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited February 2012

    I think the studies done in Finland were done with chemo, and likely the ones in England were too. I wish we had better info too.

    · Share on FacebookShare on Twitter
  • Laura5133388
    Laura5133388 Member Posts: 577
    edited February 2012

    barbiecorn, I think it is one year here, only because there have not been enough studies on shorter term. Herceptin has not been around too long. If you decide on Herceptin, they will monitor your heart. It is too bad that heart problems are a possible side effect, because you would not notice any other side effects.

    · Share on FacebookShare on Twitter
  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

    barbiecorn...I'm wondering as well why in some places they have shorter terms of herceptin. Wasn't the year trial meant for those who had more advance cancer. I'm a senior as well, and right now my heart concerns me more than a recurrence. Since the first infusion at times, I feel my heart racing. I see the need to do it in light of what sweetbean said, but for a year?

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    That's what scares me - I am 66 with history of heart problems in my family...father, uncles and aunts passed in their 60's due to heart related problems.  Evebarry - I am too more afraid of the heart problems with the Herceptin than a chance of a recurrence. It is weird, I was talking to someone yesterday whose mother had breast cancer 30 years ago...had BMX and nothing else and is still here in her 80's.  This is like going to the casino and putting all your money on black or red at the roulette table.  UGGGG!!!

    · Share on FacebookShare on Twitter
  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

    I am in the same boat in dx, except I am 1a due to the dx being solely on surgical path report. If I had mets then it would be a whole different ball game.

    My older and younger brother had a heart attack, my younger sister had a heart defect and had to have a heart transplant. After several years her new heart is giving out. My two other siblings have their heart concerns. I had rheumatic fever as a child. So, likewise, I too am concerned about heart problems. I am figuring to go for the three month mark with herceptin and have my heart look at...then decide if I can or need to continue. It is a gamble either way.

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Have you considered supplements like fish oil and CoQ10 to help prevent heart toxicity?  Dr. Block goes over supplementation in relationship to preventing SE's in his book, Life Over Cancer.

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    Evebarry - I was told by my BS that I am Stage 11a because I had a 2.2 cm - anything over 2 cm they give a class to and because I have HER2+ - I had no node involvement - My BS said that is why I am staged at 11a.  If my cm was under 2, I would have been a Stage 1a.  by mine was just .2 over.  I don't consider that much higher.  I take C0Q10 all the time because I take Lipitor for my high chelesterol.

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    2.2 is a fairly large tumor.  

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    It can't be that big - I checked it out - it is a little more than a dot over 2 and under 2 they would have not given me a stage for that.  That is what my BS told me.  Who determines the staging anyway?  Drs. do what they want to do...next week the staging will be 1.5 cm and they will consider that stage 1 - I now heard that they are going to lower the HER2+ ratios also to include those who were thought to be HER2 negative by lowering the ratios....I guess they need to get more people on Herceptin....that should really shake up the HER2 negative people.

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    In comparison to what, though?  In  the world of cancer, 2.2 cm is fairly large.  Even if you don't care about the stage, the size of the tumor remains the same.  

    I believe the standard now is that Herceptin is given to everyone who tests above 2.2.  It may be that they are discovering that people who are 2.1 and 2.0 would also benefit.  Being Her2+ used to be a veritable death sentence, but Herceptin has changed that.  We have a much better prognosis now.  It is a chemo drug with very few side effects - if more people benefit from it, that's cool with me.   Hopefully, they will come up with more drugs like Herceptin.  

    · Share on FacebookShare on Twitter
  • negirly
    negirly Member Posts: 318
    edited February 2012

    I asked my onc why we get herceptin for a year and she replied "the drug company makes a lot of money on the drug and therefore all the inital research was based on one year". they are doing some studies looking at herceptin for shorter and longer terms.  She also implied that one year is probably more than what is needed.

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    Absolutely whoever benefits from it should definitely use it....I totally agree...but in my case, considering my age, my family history,it may not be beneficial to me - at least not at this time - in the future who knows...BC can reoccur with or without treatments - so I never say never.  Herceptin is probably the only treatment I would consider.  I know a chemo nurse who developed BC and refused chemo...she is probably on other treatments but refused chemo...maybe she knows it only works in 1.4% of breast cancers not to reoccur. That is why I do not want to do chemo.  I just would like to know if any of the BC survivors prior to 2004 are now being testing in some way for the HER2+ - otherwise they are not protected with Herceptin...they should do some sort of study on BC survivors prior to the HER2+ otherwise it is still a veritable death sentence (as you say) for them.

    Does anyone know if any tests are being done on BC survivors prior to 2004 to see if they are HER2+ and what their prognosis/reoccurence is with BC?  I am sure there are BC survivors prior to 2004 who would want to know if they are HER2+ or maybe not??  Or are they claiming that Herceptin only works for newly diagnosed HER2+ positive women???  Lots of questions here.

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    In Finland they give it for 9 weeks and it seems to be working well.  GB I think it is given for six months.  Maybe it is given with chemo, that I don't know but I did read it is work for a shorter duration.  Good old drug companies...gotta love em!!!

    · Share on FacebookShare on Twitter
  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    I don't know the answers to your questions.  Perhaps Google can tell you.

     In order to test someone for the Her2 protein, you would need some of their tumor.  I can't imagine that the doctors keep that stuff.  So I doubt you can be tested for it unless you develop another cancer.  However, Her2 ladies tend to recur very fast -within two years.   

    · Share on FacebookShare on Twitter
  • barbiecorn
    barbiecorn Member Posts: 437
    edited February 2012

    I thought that was the case - you need the tumor  in order to test for HER2+ - so it may be that if someone had HER2+ prior to 2004 and were not treated for that and then get a second occurrence of cancer..then they would be tested for the HER2+. That makes sense. 

    · Share on FacebookShare on Twitter

Categories