Questions about her2 +

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Hindsfeet
Hindsfeet Member Posts: 2,456

Hope you ladies can tolerate my thoughts and questions regarding her2+ and treatment.

2007, 2008 dx dcis highgrade, Jan 2011, mucinious stage 1, Sept 2011, IDC high grade
Diagnosis: 10/4/2011, IDC, Grade 3, ER+/PR+

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  • nagem
    nagem Member Posts: 353
    edited October 2011

    A gene mutation causes your type of cancer to overexpress a certain kind of growth factor, her2. No one knows what causes that gene mutation. I haven't read your earlier posts and don't know why you're opposed to chemo. But most women tolerate herceptin very well, and it has become literally a life saver for women diagnosed with this particular kind of cancer. I had no side effects from herceptin and felt strong and healthy throughout. Of course, it is more powerful when used in combination with chemo ...

     Good luck to you.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited October 2011

    Evebarry,

     I haven't been having problems on the Herceptin.  3+ is very aggressive.  Is chemo totally out of the question for you? 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

    I am open to herceptin, but the heart issues does concern me as my family has a strong history of heart problems, plus I had rheumatic fever as a child. My younger sister had a heart transplant about six years ago.

    Diagnosis: 10/4/2011, IDC, Grade 3, ER+/PR+

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited October 2011

    Eve: In January of 2008, at age 54, I was dx with ER-/PR- Her2+ IDC. I had a mastectomy (after two lumpectomies), 6 treatments of Taxol/Carboplatin/Herceptin, then Herceptin every 3 weeks for the rest of the year.

    I tolerated all of the treatments well and am doing great today. I was healthy before all of this however, with none of your immune system problems or heart problems. Obviously, this is your decision, and I wish you well whatever your choice.

    Could you try Herceptin and see if you can tolerate it?

    Best wishes to you, Sue

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

    Question...if I took herpecin for a year would that destroy the her2+ gene?

    2007, 2008 dx dcis highgrade, Jan 2011, mucinious stage 1, Sept 2011, IDC high grade her2+ (3+)er + pr+
    Diagnosis: 10/4/2011, IDC, Grade 3, ER+/PR+, HER2+

  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited October 2011

    evebarry - such a hard decision but you know what you can tolerate...I never questioned chemo once I found I was HER2+ however I have chosen not to take tamoxifen for the ER+ (I tried taking it for 9 months and my joints and bones ached so bad I felt like I was 90 - not good when I was only 38, it aslo made me very moody and erratic)

    Herceptin is typically only given in conjunction with chemo and with all med's there is no guarantee that it will eradicate all the cancer cells however it has proven to be extremely effective in shutting down the HER2 receptors that cause the cancer to replicate so aggressively...it is given in IV form...given your current immune issues perhaps you can find an oncologist who would be willing to go against the norm...

    Whatever decision you make, I wish you the best...

  • lynbell73
    lynbell73 Member Posts: 5
    edited October 2011

    Herceptin can be given without chemo.  I just finished a year of treatment (every 3 wks). Few side effects: insomnia (more likely from the aromasin) and a little stiffness in fingers. I also lost 20 pounds. I was very worried about this but it was very gradual over the course of the year and has stabilized at 130!  Just in time for my son's wedding.  Smile

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited October 2011

    Where do you live, Evebarry? I agree that you might be too challenging for a brand new onc, but surely you can start interviewing some and see if they are open to Herceptin w/out chemo if you are sure you won't do chemo. I know that some are given a "milder" chemo with Herceptin than the more usual taxane.

    I was postmenopausal when I was dx, and the Herceptin did my heart no harm - my ejection fraction actually improved slightly at times. But certainly other women on this site had to stop due to heart issues. I honestly felt no side effects.

  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2011

    Herceptin works with chemo - they are symbiotic.  It can be given without,  but the efficacy is not proven in early stage women and it's recommended that they be given together.  Your surgeon said you can do it without but many oncologists disagree.

    You are against chemo because of personal experience with a few people you know?  You do tens of housands of women are diagnosed with breast cancer each year and do chemo, right? And, that most of them go on to live normal lifespans because of chemo?  

    Saying you don't want to do chemo because a couple of friends progressed is like saying that you once saw a Mercedes get in a car accident, so all Mercedes get into crashes.  It's just not true.

    Did you think that maybe your immune system is not strong because cancer is growing in you?  Cancer takes a while to grow and get large enough to find - years, so you have had it the entire year and a half you've been sick  That's why many woman are so sleepy and don't feel well for a long time before they are diagnosed but don't really know what's wrong.  

    During chemo, your immune system (white count) will be watched closely and boosted if necessary, and it's very possible you will end up feeling better than you thought.  

    If you do get mouth sores and thrush again, you can be treated - and there are ways to prevent it -  and I think it's better than dying of cancer.  Chemo is a short experience - four months, and you'll be done.  Herceptin goes on for a year but that doesn't affect your immune system.  It will give you a runny nose though. :)

    I did TCH and never got any nausea, mouth sores - anything.  I went to work and chaperoned my son's field trips and was fine.  I was tired at the end of the treatment but recovered quickly and felt great afterwards.  I am not alone and I am not rare.  Most people end up doing very well. 

    I understand your fear of chemo - everybody has it.  But it's not anywhere near as hard as you are imagining.  It's very doable as we say, and there are lots of ways to make it easier.

    The heart problems were when they gave herceptin with Andriamycin.  They don't give them at the same time anymore, and not only that, they often don't use that chemo anymore unless you are really young.  Odds are you'll be put on the TCH regimen, and there are few issues with that, and you can request it if you want.  You will be monitored closely and have a heart test every three months.  If you do develop heart problems, they are reversable.  You will see that hundreds of women who post here have done chemo and herceptin successfully.

    There is no guarantee your cancer won't return - not for anybody.  But, you have a VERY good chance of living a long life since you are only Stage 1.  But, HER2+ is so aggressive that without treating it you are almost sure to have a metastatic recurrence.  I would strongly rethink my stance if I were you.  Read all the stories here, see how well most women do, read statistics of women who are treated.

    Good luck to you, I hope you do well.   

  • Lady_Madonna
    Lady_Madonna Member Posts: 472
    edited October 2011

    I just wanted to strongly "second" what coolbreeze had to say!  Chemo wasn't anything like I imagined it would be.  I think the worst part was feeling weak and losing my hair (so that tells you a lot about the s/e's, or lack thereof,) but I can look back now and know that I did everything I could to kick that cancer to the curb! 

    You sound like you are feeling discouraged, understandably so, but DON'T GIVE UP!  Herceptin is a game changer.  Hit the Her2 with everything you can, if you have intolerable s/e's they can back off your treatments.  

    Wishing you all the best.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited October 2011

    I have insommia tonight...can't stop my racing mind. This whole her2+ dx has sent me into a tail spin. I do appreciate your perspective and that most women here has had success with the dual chemo/herpecin therapy. Coolbreeze there are other probably more rational reasons for not wanting to do chemo. I really don't want to make this thread a pro/con chemo conversation. I fear if I went further into my fear of chemo that it would be controversial and it's not my intent to step on anyone's toes.

    Lady Madonna...questions again...if you take herpecin for year is that enough? Are there ladies who take it longer?

    For early stage cancer, hopefully I am early stage,  the cancer hasn't gone elsewhere so  if I have the mx the cancer and her2 gene is removed then why the need for the therapy? 

    How do you know if cells have escaped from the original tumor? Are there markers via blood which would indicate the her2 gene?

    I just hate having to do more if I don't have to.  

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    evebarry - what Coolbreeze said is spot on. HER2+ve is very agressive and who knows if some cells haven't escaped already - this cannot be measured. Surgery alone will not remove the risk for you.

    The standard time for herceptin is 18 treatments - ie 1 year. There are trials in Scandanvia trying 9 weeks - personally I would rather more than less.

    Sue

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

     feel like I'm on a roller coaster ride.  

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited October 2011

    I was told without chemo that I had a 50/50 chance of my Her2+ cancer coming back.  I was told that by having Chemo I reduced my odds to a 30/50 chance of it coming back. Not really much of a difference there but worth the effort for me.  I think Herceptin works best when it is given with Chemo. I suppose its possible you could get good results with Herceptin only. Good luck with what-ever choice you make. This must be very hard for you. I find the whole Her2+ thing terrifying as well. It is very aggressive.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011

    Herceptin is a monoclonal antibody - it is not chemo and the SE's are as CoolBreeze said - a slight runny nose if that - a total breeze to have.

  • dragonfly1
    dragonfly1 Member Posts: 766
    edited October 2011
    evebarry It's so frightening to find out that you are Her2+ but Herceptin really has changed our odds dramatically. I had a very small tumor and it had not spread to the lymph nodes (stage 1) so I remember asking my oncologist, "then why in the world would I need chemo?". Her answer was that Her2+ tumors don't behave the same as others and they don't really understand why but their best guess is that it can travel through the blood. My hope is that my cancer was gone at the time of surgery but the way I look at it, chemo/Herceptin is my insurance in case I'm wrong and Her2+ is not something to gamble with. You have a difficult decision to make and I know you have to factor in your existing immune problems but you can get through the treatment and still have quality of life. By the way, they will monitor your heart very closely if you are receiving Herceptin-I have a MUGA scan every 3 months to ensure there is no problem. I managed to work full-time through chemo even though it was really tough and the year of Herceptin is easy in comparison-it is manageable. I wish you all the best with your decision.
  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited October 2011

    Ladies, I've appreciated your patience, and support. Thank you. I am happy to say that I got back my mri report today. The concern new large lump is nothing more than a large blood clot...whew! Second, the cancer area is small. The biopsy vacuum out 2 C. I wonder if they vacuum out most of the invasive cancer? If they did then perhaps they also took the her2+++ gene? Perhaps just a few high grade dcis cells are left (also found in the biopsy)? The final biopsy after surgery will tell the complete story. If there is no actual tumor or blood supply going into the tumor then I see no need for herpectin. The mx of the infected breast is preventive enough. But, if there is a blood supply going into the cancer cells then yes, herpectin would be a strong consideration...(now a consideration).

    I am so relieved. Maybe I've dodged another bullet. The whole idc is a scare.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited October 2011
    Eve - no one really knows how cancer spreads - possibly through lymph nodes and/or blood. A node negative person can end up stage IV. My first tumour had no LVI - lymphovascular invasion which I thought was good - I was told it is good but only in relation to local recurrence. I presume that's what you mean about blood supply. Surgery will remove the visible tumour but we can never know what is left floating around in our system. That is why chemo/herceptin is ordered for even stage 1 small HER2 tumours.
  • cheery
    cheery Member Posts: 311
    edited October 2011

    Hi Eve

    I hear your reluctance to do Herceptin and respect your decision. Just want to share this with you so that you can make an informed decision about Herceptin. 

    http://her2support.org/vbulletin/showthread.php?t=50781&highlight=pertuzumab+herceptin+tykerb 

  • pejkug3
    pejkug3 Member Posts: 902
    edited October 2011
    EVEBARRY - WHen I had my core biopsy, they removed a total of 8 samples and the biopsy removed all of the invasive cancer cancer in my breast.  When I had my lumpectomy, all that remained was .5cm of DCIS.  So, yes, a biopsy can remove all IDC. 

    The problem comes in when some cells, too small to be seen by current imaging technology, escape and take root somewhere else in your body.  My onc said that chemo was my insurance policy to avoid having metastatic BC take up residence in my liver and explode into a monster in 5 years.

    I agree with the previous posts.  Herceptin is well tolerated as far as SE and could be the drug that ends up saving your life in the end.  No one can say for sure. 

    You have to make a decision taht you can live with.  Which way will help you sleep better at night?
  • LeapFrog39
    LeapFrog39 Member Posts: 101
    edited October 2011

    I also did the TCH regimen (taxotere, carboplatin and herceptin). there are some uncomfortable side effects, of course, with the chemo part of this, but you will only feel unwell for a few days every three weeks, if  you tolerate the drugs fairly well. I think most people do. The herceptin is a breeze for most people as well. I had a runny nose and a facial rash for a few days after the infusions, but the success of the treatment for most early stage cancers is well documented. also, they will monitor your heart regularly while you are on herceptin.

    As others have said, Her2+++ is very aggressive and herceptin is your best bet IMO. 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited October 2011

    Pejkug3, I hear you. I've been trying to wrap my head around all this since the biopsy report. The biopsy removed 2 C of tissue. I watched the rad doctor separate it into several long strands. It was the first time to see the biopsy tissue...interesting. It looked like fat. I said to the doctor, looks like you took out the whole thing, why not just remove it all. She said with a smile, I left a little in there for the surgeon. They did another mammo to see if the clip was in the right place. Then they let me see the mammogram, and I noticed that most of the califications were gone...as I got to see the first mammo as well. So I'm not surprise that what is left is small...just don't know what is left..the invasive or the dcis, high grade.

    The biopsy reported that it was strong for idc, strong for piliferating, strong her2+, but also it include high grade, como dcis cells. Also 96% Estrogen, and 32% Pr+ ...

    So...I will see an oncologist and do further testing. If there is any question that cancer is elsewhere then I am open to doing more. Because my immune system has been exhausted this past few years, I want to do all that I can to build up my immune system and body.

    Besides, if your immune system is strong doesn't the immune killer cells destroy cancer cells floating throughout your blood system?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2011

    hi, my situation is simular to yours and I am three wks away from finishing up Taxol while continuing the Herceptin. I was wondering what check-up regimen you had after completing chemo and while continuing Herceptin for one year?

  • ALK
    ALK Member Posts: 46
    edited December 2011

    Please discuss your fears with your oncologist.  She/he will have some sound advise.  I wouldn't wait unless doctor tells you it is for the best.  I found my lump in May and was diagnosed in June.  Surgery was July and tumor had grown from 1mm-over 3 mm.  Depending on your her 2, it make spread quickly.  Please don't take this as a scare, but talk to your doctor.  You will be put on different chemo drugs.  

     I just finished my last "hard" treatment.  I had some days that I didn't think that I could go through it, but I did. You will get through this as well.  You can send me an email and share your fears, vent, or just need a friend to talk to.  

    On my last treatment, I had an allergic reaction to one of the three chemo meds.  Nurses are right there to get you through a reaction if you would get one.

     Herceptin, from what I'm told, is a lifesaver.  I will be on that until next August.

    Good luck and let me know what you decide. 

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    I just want to add that I was one of those who was exhausted and sick so often before diagnosis. I, too, kept getting yeast infections and took probiotics to help, but that did not get me through it. I was so tired all the time and not keeping up with life. I kept getting colds almost monthly. I did 4 AC and 4 Taxol DD. I had a hard time with joint pain more than most of my MO's patients, but overall, I feel better than I have in years. My last treatment was 10-07-11. 

    I would second ALK. I would make a list of your reasons for not doing chemo and take it to the MO. They certainly can give you sound medical reasoning to show you your odds on some of the SE's. Also, my MO did a muga scan for the heart every two treatments. This was very reassuring to me as there are lots of heart problems in my family. My daughter has a congenital heart problem as well. Tell them all of your concerns and they may find ways to help you do treatments that accomodate them. It is your life and you will never know if you don't go in with that list and a friend who can help listen with you.

    I am not asking you to try a treatment that you don't want. I am saying that they may have options that you would be willing to try. I wish you all the best!!! 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2012

    My daughter said I jump ship here at bco too soon in regard to questions I'm wrestling with about herceptin. I left bco  because I felt corner on my treatment decision and sometimes misunderstood. Plus, I needed to get back to work full time...posting here had become a distraction to my job and life. I needed to move on ... but Monday, I am scheduled for my first herceptin infusion. I have a knot in my stomach over doing this procedure or infusion. I still have a few questions that I am wrestling with and thought perhaps a few of you with all your herceptin knowledge might answer the questions I have. It may seem silly to you all that I'm still wrestling with all this when it's just days away I'm scheduled to have it. So, I'm climbing back on bco ship with the discipline to only come here or post when I need to. Not roaming to other threads for awhile. Just need to get through this herceptin treatment with a little support.

      1. If no evidence of cancer tumor (scans show no mets or tumors) will the herceptin bind on to rouge idc cells (with the her2+)? I read somewhere that herceptin only binds to cancer tumors.
    2. Does the herceptin attach itself to healthy cells with the normal amount of her2 on them? If so, what will this do to my natural cells with her2?
    Thanks.

  • Beesie
    Beesie Member Posts: 12,240
    edited February 2012

    Eve, I don't have any advice for you and don't have the knowledge to answer your questions, but I just wanted to welcome you back and wish you all the best for your Herceptin infusion on Monday.

    ((((Hugs)))). 

  • jap62
    jap62 Member Posts: 1,385
    edited February 2012

    hello all,

    I just found out that my insur denied my ct & bone scans, they say since I have no pain in my bones and my alkaline ph look ok they denied it.  So has anyone not have any of these (bone pain & ok levels)and bc had spread and only found because of the test?  I say I am stage 1 but not sure, I did that based on what I saw others say regarding the tumor size, my bso said she can't stage me until they get in there and take it out, but my oc wants me to do chemo first then bimx.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2012

    eve - some info for you, from Genentech's site.  Note the last paragraph:

    Role of HER2 in Tumor Growth

    In approximately 25 percent of women with breast cancer, there is a genetic alteration in the HER2 gene that produces an increased amount of the growth factor receptor protein on the tumor cell surface.

    This overexpression can cause cells to divide, multiply, and grow more rapidly than normal. Research has shown that women with HER2-positive breast cancer have a more aggressive disease, greater likelihood of recurrence, poorer prognosis, and decreased survival compared to women with HER2-negative breast cancer.

    It is important to understand that the HER2 gene abnormality is only present in the breast cancer cells, not in the rest of the cells in the body, and cannot be passed onto other family members.

  • jap62
    jap62 Member Posts: 1,385
    edited February 2012

    very depressing special K

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