Any Naturalists Views On Her2+ treatment??

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chonkala
chonkala Member Posts: 22


Hi all. My doctors at Sloan Kettering are pushing me into Chemo & Herceptin and I am sick over it- I'm considering alternative therapies even. I have zero regard for the hair loss, fatigue & the other temporary effects of Chemo...its the LONG term effects of early menopause, potential other cancers from the Chemo etc. So I am wondering if anyone else struggled with this decision. Chemo only works 30-40% of the time, thats 60-70% that it DOES NOT WORK...it just seems so risky to me- even being HER2+...Let me know your thoughts and experiences :)


Here's my stats:


40 years old


Stage 1


ER-/PR-


Her2+


1.1 cm tumor removed


I just had surgery yesterday in an attempt to get clear margins, also ordered the Mammaprint. I previously posted this in another area, but i'm new to this so I apologize for double posting :) just looking for similar experiences or thoughts.

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Comments

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited November 2013

    Chonkala - when it comes to HER2+ve breast cancer, you really cannot take the chance to not have chemo and Herceptin. Some ladies are now being offered Herceptin only - that may be something for you to pursue. Personally, I'm glad I threw everything at it.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited November 2013


    Chonkala,

    Back when I was diagnosed, several years before Herceptin (trastuzumab) was even available outside of clinical trials as standard treatment for "adjuvant" treatment, I did not want chemotherapy for the same reasons you have given.

    I did the chemo, and it makes no more sense to me for my diagnosis today than it did then. Please keep in mind that your diagnosis is considered higher risk than mine due to you being younger than I was at the time, and due to you being hormone receptor negative.

    I did the chemo at the time because I wasn't as sure then as I am now about how unclear the basis for adding chemotherapy to the treatment is. What I didn't want to happen to me and my life, happened due to the treatment. And I never have had trastuzumab, either. But again -- my diagnosis is different than yours is.

    What is so hard to accept, no matter what treatment you do, is that whatever physical circumstances about us bring about breast cancer, the present "weapon" used against it IS the use of surgical or chemical reduction of ovarian function. 

    It is quite popular to believe the theory that the primary function of chemotherapy is intended to destroy any cancer cells that have "spread" in the body. Based on fear, that sells quite well.

    While chemotherapy kills cells (of most kinds, healthy or cancerous), the effect on ovarian function is often what is effective in reducing whatever stimulus it is that drives the cancer. And chemotherapy does not kill stem cells, so if your cancer happens to rely on stem cells, chemo won't "wipe out that last cancer cell that spread elsewhere in your body". The younger one is, the harder it is and the more it takes to achieve reduction of ovarian function.

    So that is one-half of the answer to your question. The other half involves the trastuzumab, not the chemo. Originally it was given only to those with metastatic cancer, and when given without chemothearpy it wasn't effective enough for that patient group. That may have been due to the tumor burden being greater with metastatic cancer than with non-metastatic cancer.  In any case, the only trials that had been done since then were done by giving trastuzumab and chemotherapy. So for the most part, we don't know if there are patients who don't benefit from chemotherapy but do benefit from trastuzumab used alone. Again, you have to remember that a primary target of chemotherapy is to reduce ovarian function. It may be true that using trastuzumab and other mechanisms of reducing ovarian function (such as removal of the ovaries) may achieve the goal of preventing recurrence, WITHOUT chemotherapy.

    More recently a trial for those over age 65 for adjuvant treatment is offering trastuzumab used alone. Theoretically, ovarian function for that group is less of an issue, and that group may also not tolerate both chemotherapy and trastuzumab as well as younger patients do. Hopefully that trial will have enough applicants and results will favor the use of trastuzumab alone for patients who don't need ovarian ablation of one kind or another.

    Hope that helps some.

     

  • Albertan
    Albertan Member Posts: 38
    edited November 2013

    My heart goes out to you.  I was in EXACTLY the same situation last year.  It was agonizing making the decision - and the fact that I didn't like my oncologist didn't helpl either. 

    I live in Canada, and here we have to get chemo with Herceptin.  I had read on this forum about women in the States getting Herceptin without chemo and sure asked about that, but no go.  Not an option.  The stats are overwhelming and so confusing - and the advocates on both sides (conventional and alternative) are absolutely sure that they are right.  So, what to do?

    In the end, I went conventional and also went to a naturopath.  So I had a single mastectomy (since I had had DCIS 15 years ago with a lumpectomy and radiation, I now needed a mastectomy), four rounds of chemo and am just about to finish up one year of Herceptin - get that every 3 weeks.  In addition, the naturopath gave me mega doses of intravenous Vitamin C, and in comparison to others, I did pretty well.  Interestingly, while I lost my hair, my husband shaved it off and while the stubble thinned out, I never got as bald as a billiard ball.  Was that the Vitamin C?  I don't know. 

    If I had to do it over, I would try the "cold caps" in an effort to save my hair.  I didn't find out about them til after my first chemo and by then it's too late.  Losing my hair was rough for me.  And cold caps seem to be more available in the States, although they are pricey. 

    Your decision is difficult to make because weighing your options means dealing with variables and stats that are not clear.  There IS no clear answer in your situation and that ambiguity drove me nuts. 

    Keep asking questions.  You must be comfortable with your answer. 

    Susan

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    thank you so much for all of your repossess. Your words & experiences are so important to me. I've decided to "opt out" of chemo. I've been reading everyday, all day, watching documentaries, learning so much. That is what feels right to me now. There is no easy decisions with cancer ... Only time will tell. Xox

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


    I believe one of the questions to ask is this...if you have a recurrence will you be sorry you did not do the chemo now? I've met so many women sitting in the chemo chairs who were Stage 1, no chemo, now it is back and they regret they didn't do it when the doctors were telling them to do so.


    I write a BC Blog. I hear from literally hundreds if not thousands of women. Many have regrets...it is heartwrenching to read some of the stories of regret.


    One last question: You are young and potentially have a long life. You are fortunate to be going to Sloan Kettering one of the best cancer hospitals in the world. I'm curious why you chose to go to a great hospital like Sloan Kettering if you don't want to listen to what the doctors think is best for you.

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    hi Denise! I understand what you are saying about stage 1 and breast cancer coming back without chemo. As well it may come back WITH chemo. As my doctor from Sloan says "it's a crap shoot." And after researching chemo I have decided for me, at this time of my life, the crap shoot is just not worth it. You speak of regret of not doing chemo. There are many, many, many people who have regret for doing chemo and what they believe it has brought into their lives as well. It goes both ways. I'm not sure if you've seen Dr. Wongs name on some of these posts- he's a 4th generation Chinese Herbalist who worked at Sloan Kettering for 10 years as a cancer researcher (pretty impressive if you ask me), on our first phone call he told me " do not put chemo in your body- it is carcinogenic. Sloan is very, very conventional. You will easily get leukemia. Whether or not you work with me, please do not put that in your body." And guess what? A man with his stature, education, and research only has to say that to me ONCE. Would I NEVER do chemo? I don't know. I'll cross that bridge when I get there. Right now this is a choice that me and my family feels works for us. One day at a time.

  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited November 2013


    I'm just wondering where the stats that chemo doesn't work 60-70% of the time?? I've never heard of that statistic.


    Trish

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    Hi Trish. I've read it many times, but here is a link to Chris beat cancer- he has done extensive research and he can probably explain it better than I can :)


    http://www.chrisbeatcancer.com/how-effective-is-chemotherapy/

  • pupmom
    pupmom Member Posts: 5,068
    edited November 2013


    Chonkala, if you are ER/PR negative, and HER+, chemo plus Herceptin are the only treatments that will save you.

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    Really Yorkie? I have spoken to many a woman who have had their best friend, mother, sister do herceptin and chemo comb and still not be "saved". NOTHING is a guarantee.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2013


    Chonkala, I think you would be more comfortable with the responses if you moved your question to the Alternative Medicine thread.

  • pupmom
    pupmom Member Posts: 5,068
    edited November 2013


    Of course nothing is a guarantee, but if you want to beat the VERY huge odds against your diagnosis, you will take chemo/Herceptin. But I am done with this thread. If you want to commit suicide it is your choice. God bless and keep you.

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    Hi Melissa! Thank you, I thought the title said it all, but I guess not :)


    Either way I am comfortable with my decision and I TOTALLY GET others opinions.

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    wow Yorkie. Ok then.

  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited November 2013


    Chonkala


    That study is almost 10 years old now, many, many things have changed. I for one would not want to place my trust in someone who beat colon cancer, which is a completely different disease to the one you are facing.


    Why don't you research more medical based studies to do with breast cancer and ones that are more up to date.


    It does seem that your mind is made up, however, so I doubt you will do this.


    I truly hope that your course of action will be the best one for you.

    Trish

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    of course Trisha-Anne, I wouldn't choose ANYTHING that I didn't feel was best for me and my family. Thank you :)

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited November 2013

    Chonkala - have you enquired into having Herceptin by itself - there are lots of women here who have had it alone. Herceptin is NOT chemo by any means and the side effects are very minimal - you certainly wouldn't lose your hair or be sick with it.

  • chonkala
    chonkala Member Posts: 22
    edited November 2013


    hi Suzieq!! Yes, I have been inquiring about herceptin alone. Not given here in the states without chemo- it is given without chemo in Europe and with success. I'm still searching for an oncologist to work with me & perhaps allow herceptin alone- which is not illegal, just frowned upon.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited November 2013

    I'm sure there are women here who have had it by itself in the US.

  • BlueFox
    BlueFox Member Posts: 99
    edited December 2013


    If you are not sure about treatments, ask the oncs the risk of recurrence (or death) with treatment and without. This makes it much easier to decide.


    I've put you diagnosis into an online risk calculator http://www.predict.nhs.uk/predict.shtml and it looks like chemo nearly halves the risk of dying of cancer - definitely worth doing.


    I wasn't sure what grade your cancer is so I put unknown (stage and grade are different things) and assumed node negative.


    You can get a more refined estimate by putting in more data, but the best estimate of the benefits will come from your onc who has the most information about your cancer.

  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited December 2013


    I have not read alll of the replies but I will say with regard to "crap shoot" that indeed in some cases it really is. Breast cancer is not all the same though. With regard to triple negative, it is a crap shoot to know which chemo (if any) will work and for how long. With estrogen positive, it is hard to know which hormonal treatment will be the one that works. However, with HER2+, you are dealing with a very aggressive cancer. It is not a crap shoot with regard to Herceptin. Most of the time, it works. I was 41 when I was diagnosed and I went from stage II to stage IV within a month's time. After my surgery, it spread to my liver (4 lesions), all my right ribs, left hip, chest nodes. However, chemo plus Herceptin cleared it up and I have been NED now for 5 1/2 years. I still get Herceptin every three weeks. I also get treated by a naturalist too. I don't think just one or the other saved me but both. I just throw out there that I think Herceptin is important whether you elect to do chemo or can get it alone. Or, maybe Tykerb. You willnot lose your hair on these alone. My opinion being 41 when diagnosed and having it progress so fast, hair was not a consideration .. not for a minute.


    All the best to you.


    Jennifer

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited December 2013

    I think where most people get confused about chemotherapy is its intended use.  One of the issues that people who decide upon alternative therapies use is that "... so-and-so had chemotherapy and still died of cancer ..."   And that can be true.  Chemotherapy cannot cure cancer.  Neither can radiation or hormonals such as tamoxifen.  But chemotherapy as a adjuvant treatment can decrease your chances of a cancer recurrence.  That is its primary purpose.  Not to cure, but reduce risk.

    Your primary "curative" treatment will be surgery.  Removing that tumour from your body is your best option for survival.  Leaving it there will kill you.  So, if you have the tumor removed, then you've taken the single, biggest step toward recovery

    Radiation therapy is used to decrease your chance of local recurrence, and chemotherapy- and hormonal therapy is used to decrease the risk of a systemic recurrence.  These are not primary treatments like the surgery; they are adjuvent treatments, i.e., treatment in addition to the surgery.  No oncologist will ever tell you that adjuvent therapies will cure you; that is not the role of adjuvent therapies.  Sure, surgery will reduce risk the most and, in some cases, prove "curative".  But adjuvent therapies can reduce risk further.

    Another misconception is that adjuvent therapies will cause more cancer or destroy your immune system.  The risk of adjuvent therapies causing more cancer is very small compared to the risk of the cancer returning if adjuvent therapies are refused.  This fact has stood up to repeated testing, research, and clinical trials.  Those who do adjuvent therapy in addition to surgery have better survival outcomes.  And, as for adjuvent therapies destroying your immune system?   Some chemo drugs temporarily suppress the immune system, but don't destroy it.  Our immune systems always rebound after chemotherapy.  If they didn't, the common cold would kill us post-cancer.

    Cancer doesn't recur because your immune system has been destroyed- or compromised by adjuvent therapies; cancer recurs because our primary surgical treatments and/or adjuvent threatments aren't good enough to root out and destroy every, single cancer cell.  Alternative treatments don't have that ability either, but conventional treatment has a better track record of reducing risk than alternative-only treatments.  And reducing risk is what cancer treatment is all about.

    Only you can decide what is right for you and what you are comfortable with.  But, please, do not dismiss adjuvent therapy under the belief that "... it doesn't work..."  It does work.  It will increase your chances of surviving long-term.  It just won't cure you.

    .


     

  • oranje_mama
    oranje_mama Member Posts: 260
    edited December 2013


    I asked my MO about Herceptin-only treatment. She said that it is highly unlikely to be recommended in the US because there are so few if any recognized studies. She also said that it seems to be the case that Herceptin plus chemo is most effective - she described the Herceptin as identifying the cancer cells with the extra copies of the HER2 protein and then chemo finishing the job by making sure they are killed off.

  • BlueFox
    BlueFox Member Posts: 99
    edited December 2013


    From what I've read chemo gives a much greater benefit than Herceptin. Herceptin is great because it has far fewer side effects, but doesn't provide the same level of risk reduction. But it works well as an additional treatment - can almost halve whatever risk remains after all the other treatments.


    The rationale against Herceptin only is that if your cancer is aggressive enough to need Herceptin, it certainly needs chemo as well.


    However there have been some promising studies of using two different anti-HER2 drugs as adjuvant treatment. For some cancers this dual HER2 blockade can work as well as Herceptin and Chemo, but they don't yet know which cancer types.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    The benefit of chemo is generally less for those who are HR+ and greater for those who are not, whether given with trastuzumab or not.

    Ever since the initiation of the original trials for trastuzumab over a decade ago, we remain stuck in limbo about which patients need chemo in addition to trastuzumab and which ones don't, simply because the trials were done on just the higher risk adjuvant patients (2 cm or greater, or positive nodes), and they were done using both chemo and trastuzumab. So for over a decade now we have continued to subject all adjuvant HER2 positive patients (even low-risk adjuvant patients, which make up the greater number of adjuvant patients as a whole) to all the risks and expense and hassles of chemotherapy and its support drugs, without scientifically verifiying whether it is necessary or not. That is what is apparently considered "playing it safe".

     

    And that is despite also knowing that chemotherapy is thought not to kill stem cells.

     

  • ruthbru
    ruthbru Member Posts: 57,235
    edited December 2013

    Some doctors actually do look at the individual. A friend of mine did Herceptin without chemo; she was 68 years old, Stage I, and very highly ER/PR positive. Her oncologist said that Herceptin was a must, but since anti-hormonals should work very well in her case, he was comfortable skipping chemo (although if she would have been younger, chemo would have been in his recommendations).

    Chonkala, you are very young. You are HER2+, which is very aggressive. You are also ER/PR negative, which means that whatever you do now is your only shot to beat this disease. I would do the standard of care and add all the complementary things to help you get through your treatments and beyond. Best wishes.

  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited December 2013


    Hi sweet lady, I'm not a naturalist but I am terminally stubborn which is my natural state so I'm going to give you my thoughts.


    First: I don't think you accidentally posted here. The forums are very well marked. I think you want someone to talk you into doing what you know you need to do, so I'm volunteering for that role.


    Second: there is no naturalistic treatment for HER2. No targeted therapy, no vitamin mix, no nothing. There are, to my understanding, naturalistic therapies to other permutations and combinations of breast cancer, but not HER2.


    HER2 is a beast.


    In the early stages of development, breast cancer patients did a sit in at Genentech. They were desperate women who were on the last legs of actually dying from this horrible disease -- a concept that those of us who roll our eyes at the outsize reaction to the diagnosis conveniently forget -- pulling up onto the lawn and otherwise disrupting the operations of the company.


    Those women got nothing.


    I suggest you watch this movie about the cancer researcher who discovered Herceptin. http://www.mylifetime.com/movies/living-proof/video/fighting-for-herceptin


    I vigorously resisted every single step of treatment from the biopsy on. I am not one who takes well to being told what to do. AT ALL.


    Beesie arguably saved my life in consistently and calmly redirecting my attention to the HER2 diagnosis -- "well, yea, that's all good and well and interesting, but LadyGrey, HER2 is a different kettle of fish and so perhaps you should reconsider your 'no cancer doctor will ever touch me again' stance."


    That's an exaggeration, but not by much.


    My sense is that you think you will lose far more than you will actually lose. Sit down and write out what you think you will lose. Your convictions about natural medicine, your hair, your libido -- all real losses, then see if there is a workaround.


    I hope you hold your head up high (my head was down low, crying like a 2 year old), grit your teeth and do the chemo/Herception.


    Or, don't. But know to the very marrow of your bones that that is the right choice for you.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    Chonkala,

    Because you are young and HR-, one major item I don't think you can avoid and still survive is the loss of ovarian function through one means or another. I do understand how hard that is, and that anything like that still IS a choice, but a bleak one. I don't know how much or how little "cell kill" by chemotherapy plays into your picture as a person who is HR- versus how much the loss of ovarian function achieves for you. At the very least, chemical ovarian suppression might be a choice until you are older, as one combination with trastuzumab.

    A number of people have been able to get Herceptin alone by allowing the onc to offer chemo + trastuzumab, which gets the onc off the hook, and then refusing the chemo, in which situation oncs are in the position of offering trastuzumab as at least some protection in your behalf. However, some insurance will not pay for it if it is not given with chemo (go figure -- it is a lot more expensive for the insurance company to pay for the chemo and the endless lab testing with chemo too, yet some still won't pay for trastuzumab used alone).

  • rozem
    rozem Member Posts: 1,375
    edited December 2013


    AA - while I respect your opinions and we are all entitled to them, I have read many of your posts and you are very forthcoming that chemo may have not been the best choice for you with your diagnosis. For the original poster -I wouldn't be advocating Herceptin without chemo. The "high risk" being over 2cm does not apply to us her2 gals and certainly not the hormone negative plus her2 positive, that's why they give chemo and Herceptin for any tumor over 5mm (and in some cases less than that) because there are MANY studies that tell us that even the tiniest of her2 tumors the potential that it has already spread is greater than her2 neg disease. I'm in Canada and they changed the guidelines years ago on who gets Herceptin from 2cm and over to 5mm and over. In a country with public healthcare they don't spend money unless there is HARD evidence of benefit


    Chonkala - you are hormone negative and her2 positive which unfortunately is more aggressive (even more so than er/pr/hr positive) Chemo and Herceptin is your only adjuvant therapy as you will not have any hormone therapy once your treatment is done. This is your best shot at a cure - you are young and you will get through it. Use natural therapies to help you get through treatment. If you want a gentler chemo ask for TCH which spares you the "A" (anthracyline)


    Like Lady Grey said - her2 is a different beast then your garden variety BC

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