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Her2 Positive - life without chemo

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Anush
Anush Member Posts: 9
edited November 2016 in Just Diagnosed

Hi,

Would never think I will be in this community, but seeing the support you guys give each other, I am even happy to find you. I have been diagnosed with Her2 positive Bilateral Invasive Carcinoma just 2 weeks ago, which means I have tumors in both breasts.

My doctor suggests 10 rounds of herceptin+ chemotherapy, but... First I live in a country where the treatment is too expensive and covered exclusively out of pocket and I am afraid of 10 rounds of chemo. With the "advanced" medicine that we have I am more likely to die of chemo than of the cancer. So my question is how long will I live if I just decide not to do anything??? Any statistics on that?

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  • moderators
    moderators Posts: 8,067
    edited August 2016
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    Dear Anush, Welcome to the community. We are sorry about your diagnosis but glad that you reached out here. While you are waiting for some of our members to respond to your question, you may want to check out some of the information on HER 2 Positive on our main site. Please stay connected here and let us know if we can help you with navigation around the boards. The Mods

  • Smurfette26
    Smurfette26 Member Posts: 269
    edited August 2016
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    Hi Anush, Sorry you have found yourself joining this community. You will find a wealth of information and incredible support here.

    Every person is different, every cancer is different. Some throw all they can at their cancer and still progress or recur. Others chose minimal treatment options and do very well. There are no definitive answers and statistics can be very general. Stay away from Google.

    HER2+ cancers are more aggressive and only you can decide what is right for you. There are so many other things to consider. Your age, your general health. Are you well otherwise?

    Yes chemo is horrible and I did feel like my body was a "toxic waste dump" for a time but many people tolerate chemo very well. I never feared that chemo was going to kill me and side effects can be very well managed. I was more frightened of not seeing my grandchildren grow up than I was of treatment but it is a very scary thing to go through.

    I live in Australia and I didn't have huge out of pocket expenses. We are fortunate to have universal health care here and most of my treatment was covered under Medicare. Cancer treatment is very expensive but no one should die because they can't afford it.

    There are funds, groups, grants and charities that can provide financial assistance. A Social Worker at your local hospital should be able to connect you with these resources. Have you discussed your concerns with your Dr or Breast Nurse?

    Wishing you peace with whatever decision you make but if it was me I would follow the Oncologist's advice. Hugs Donna.

  • edwards750
    edwards750 Member Posts: 1,568
    edited August 2016
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    I didn't have chemo but I did have radiation. My BC was IDC, Stage 1b, Grade 1. It was HER negative so not as aggressive as yours. Also I do have health insurance although a large deductible too. I met that deductible in 2 months so everything after that was covered 100%. Fortunately for my husband and I radiation was included. The cost to do radiation was in the 30k range. 33 treatments. We could not have afforded to pay that.

    Smurfette gave you some really good advice about funding your cancer and treatments. I do live in the USA so things are different here to be sure but I can't imagine there aren't agencies that offer financial assistance. It is unthinkable that someone who has been DX with BC doesn't have every resource available to treat the disease. Granted it is expensive but there is a lot of press out there of groups and agencies offering help. We shouldn't have to endure financial worries on top of fighting this disease.

    Since I didn't have chemo I can't speak to the side effects but I know women who have. They said it was no walk in the park but it was the go to treatment to prolong their lives so no question they were doing it. Your doctors can advise you how skipping chemo can/will affect your condition now and in the long run.

    Frankly if I had your DXI would be afraid not to but it's your life and your body and your decision. There are no guarantees even with chemo. Just don't look back and say I wish I had.

    Good luck and keep us posted.

    Diane

  • Anush
    Anush Member Posts: 9
    edited August 2016
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    Hi girls,

    Thank you for your support and heartwarming answers. I live in Armenia and YES the government and social care institutions (if there are any) offer no help. The only thing covered are painkillers, the worst possible ones.

    As for your question about breast nurse, no one knows any here, sad, but the reality. I am sure there are some charity funds but only singles out of thousands find any financial support from them and I am too weak now to start breaking the doors.

    Anyways, I am not here to complain about my country, we have what we have.

    What I would like to know is how long do statistics show people can live with aggressive bilateral cancer and if there are any minimal hormonal therapy I can take to prolong life or maybe feel better. I don't won't the chemo that they can offer me (poorly chosen and killing). I am 62 and I want to face death on my legs.

  • Anush
    Anush Member Posts: 9
    edited August 2016
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    Dear Hydranne,

    Your example gave me much hope and I realize I should be proactive to find a way out. I checked the link you provided but Genentech clearly states that they offer solutions only to US residents. Do you think there is any hope to write to them from Armenia?

    Thank you so much for your support, I wish you all what we all here need the baddest, which I think is hope.

  • specialk
    specialk Member Posts: 9,226
    edited August 2016
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    Anush - Genentech is an arm of Roche, which is based in Switzerland. Here is a link for Roche in Armenia - maybe you can contact them and inquire about patient assistance. Click on the little blue locater and the contact info comes up.

    http://www.roche.com/about/business/roche_worldwide/roche_worldwide-countrysites.htm?country=AM

  • Beatmon
    Beatmon Member Posts: 617
    edited August 2016
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    Anush, so sorry you are facing this and having to worry about financing on top of that. Hopefully the link SpecialK provided will help you find hope for treatment.

  • FaithAndTrust
    FaithAndTrust Member Posts: 14
    edited August 2016
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    Dear Anush am struggling to know what to say to you..but so glad to hear you respond to Hydranne post about hope and that you must be proactive to find a way out ....I believe there is always a way out. Get as much information as you can that applies to you in your country ... Listen to your gut instinct and trust it (I believe this is The Holy Spirit guiding us....Make a Plan...a Plan can always be made or remade if need be.

    If you have faith in God Pray like you've never prayed before and God will be there for you...

    We will continue to be here for you so keep posting..

    Wishing you strength faithand inspiration.

  • Anush
    Anush Member Posts: 9
    edited August 2016
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    Thank you SpecialK for being concerned, thank you all girls.

    I checked each and every option here in my country (no hope at all) and send 2 requests to international organizations, which might be providing herceptin to patients like me. I am now waiting for their response and checking my email every 5 minutes.

    Looking at the list of treatments some of you have already gone through I realize there is a lot in front of me and if some people survive I can also do if I find the necessary funding.

    I am determined not to lose faith and hope and struggle to the end. Actually i was feeling different the very first days I got to know to the diagnosis, but this community gives me much power and hope, so thank you once again.

    Anybody knows if BC causes terrible pain and if I should start looking for some painkillers if after all I don't find the means to start chemo?


  • Smurfette26
    Smurfette26 Member Posts: 269
    edited August 2016
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    I have been thinking of you Anush. I can't begin to imagine the anguish you are going through. A cancer diagnosis is devastating enough without the worry of accessing affordable treatment. So glad that you are finding some strength and hope here.

    Wishing you success in your search for treatment.

    As a last resort could you consider a "Go Fund Me" page?

    Sending love and light, Donna.

  • denise-g
    denise-g Member Posts: 353
    edited August 2016
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    I had Stage 3 Her2Pos++++++ cancer. Plus, I had to stop Herceptin after 3 months because of complications with

    my heart. I had 16 chemo treatments and radiation. That being said, I am 3 months shy of FIVE YEARS out. I NEVER

    thought I would still be here, but I feel better with every day that passes!

    It was worth every moment of suffering. I was self-employed, had health insurance with HUGE deductibles, but had no money comingin for a LONG time (2 years). I made it, I did it. My breast cancer blog is read by women all over the world. I started a business to help others going through cancer. I was determined to make something good out of a very bad situation. My mom and sister then had breast cancer within the last 3 years. My sister went through it all again. My mom was early stage.

    I AM HOPING AND PRAYING THAT YOU CAN FIND A WAY and life can be VERY GOOD again!!!

    Please do call Roche as suggested!! They do help!

  • bluepearl
    bluepearl Member Posts: 133
    edited August 2016
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    If you can, contact the United Armenian Fund and Nelly Gasparyan head of the pharmacy at the National Oncology Centre in your country. They, apparently, can help you. It is a good organization that helps people afford drugs and treatments from cancer to diabetes to heart disease. I hope you can get in contact. XOXOXOX

  • denise-g
    denise-g Member Posts: 353
    edited August 2016
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    This Armenian young woman has raised half of the money for her breast cancer treatment:

    https://www.giveforward.com/fundraiser/q78b


  • Anush
    Anush Member Posts: 9
    edited August 2016
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    Dear Denise, your example is amazing and heartwarming. I am happy you beat the cancer and are feeling fine now.

    All the women here are sending me links to the funds, suggest some funding options but what you don't realize, girls, is that I live in Armenia, where even Roche EXCLUSIVELY sells medication, while the price of one ampule of Herceptin is all of my salary for a year. You must be shocked, I know. As for other charity organizations in Armenia they can hardly raise funds for children and young people. So what I want now is die without pain.

  • denise-g
    denise-g Member Posts: 353
    edited August 2016
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    Oh Anush, I have been reading more about the horrible struggles of the women with breast cancer in Armenia.

    I am so very sorry. You know, people of the world are very generous. You never know if you post your

    story to one of the funding sites, like giveforward.com you might be able to raise the money. Sending love, Denise

  • BarredOwl
    BarredOwl Member Posts: 261
    edited August 2016
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    Dear Anush:

    I don't know if you are still trying to obtain patient assistance from Roche or other sources. If you exhaust all possible options for access to trastuzumab, please seek additional advice from your medical oncologist regarding other possible treatments.

    Although clearly less effective than a trastuzumab-containing regimen, please ask your medical oncologist whether there are some chemotherapy regimens (without trastuzumab) that could reduce the risk of distant recurrence in your case. Chemotherapy regimens were used in HER2+ disease prior to the development of trastuzumab, and your medical oncologist can advise you about their risk / benefit in the HER2+ setting.

    In addition, if you have hormone receptor-positive disease (e.g., ER and/or PR positive disease), please also discuss approaches to endocrine therapy with your medical oncologist. If chemotherapy is used, endocrine therapy would be used after chemo.

    I realize there may be barriers to chemotherapy drugs or some approaches to endocrine therapy, but they are likely to be much cheaper than a biologic like trastuzumab. Patient assistance for these may also be available.

    BarredOwl

  • Anush
    Anush Member Posts: 9
    edited August 2016
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    Dear Hydrenne,

    I can't find words to thank you for the research you make for me. In fact I have already contacted Roche and what they answered me was that they no longer provide the fourth ampule for free, and even if they did I still wouldn't be able to buy 3, since my salary for 1 year is not enough even for half an ampule. I am a teacher of Maths, who spent 42 years at school, but now the state says they can offer me nothing but waiting for 4 months for a simple CT, which i will still have to pay for partially. That's absurd. But I am tired of talking to angry and mischievous "social workers", actually telephone assistants, who tell me that there are is no funding available for cancer patients. I can't hear that any more. They are making me even more angry and desperate. I called Genentech in the U.S. and though they still told me that they provide medication only to US citizens, but they were so kind and patient (even if trained to be so), it doesn't matter. What I am most angry at is the voice and tone that they chose for speaking with cancer patients. Now I am more angry with the state, country and doctors than the cancer itself. I want the whole world to know how they work here, what they do here and how cruel is being sick in Armenia. Sorry for such an angry post. I know all of you are there for me just like for others and I am very thankful to you. I will also appreciate if you contact any funds you know, That will be HUGE support for me....

  • Anush
    Anush Member Posts: 9
    edited August 2016
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    My phone is +37495484936 and my e-mail is anush.tamazyan@mail.ru

  • car2tenn
    car2tenn Member Posts: 132
    edited August 2016
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    Oh I would not go without any chemo. for me it was not too bad. It put me in remission and my hair is long enough now to not need a wig. So hope you stumble on the decision that you are confident is the right one for you.

  • Anush
    Anush Member Posts: 9
    edited August 2016
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    Hello girls,

    Thank you for being concerned for me, thank you all your support and efforts to find some help for me. Thank you for advice and sharing experiences. I have some good news, which I am happy to share with you, since I know all of you will be glad for me. One of the women from BCO helped me with the funding and I took my first chemo yesterday. I am still in the hospital but quite fine. A little dizziness and nausea, nothing serious though. I hope to be well in the future as well, but they say it's quite improbable. Anyways, with the help of this generous and kind woman I can now afford chemotherapy and obtain hope for a positive outcome for me.

    Thank you so much, all!

  • HelenWNZ
    HelenWNZ Member Posts: 404
    edited August 2016
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    Wishing you all the very best in your treatment. What a wonderful gesture from your guardian angel.

    Take care

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2016
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    Anush, how absolutely wonderful for you! And God bless the woman who helped you get this life saving treatment! This story gives me hope for humanity, which I have very little of anymore. (((Hugs to you and your guardian angel!)))

    Hug

  • Anush
    Anush Member Posts: 9
    edited August 2016
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    Hello girls,

    I think the name of the topic should be changed to "life with chemo". It is not very bad though:) everything as promised:) I am trying to stay optimistic despite all the annoying and unpleasant side effects and I know most of you have gone through this nightmare but are still strong, optimistic and fine. I would like to have some statistics as doctors never name any. How many of you have had her2 positive tumors? How many rounds have you gone through? What was it all like? Any lasting or continuous side effects? And most importantly the results, what are the results? Recurrence rates?

    Too many questions... I will appreciate your answers at least to some of them.


    Thank you all,

    Anush


  • 33triple
    33triple Member Posts: 48
    edited August 2016
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    Dear Anush,

    Congrats on the support!

    As a cancer survivor (July 1st 2016) I have this message to share, one that I shared with my personsl network April 12 2016:

    "On Dec 15th 2015, a week before my 39th birthday, I was diagnosed with Stage 2A Grade 3 , ER/PR/Her2+, IDC Breast Cancer after discovering a one inch lump via a self breast exam. Jan 10th, (the day of David Bowie's transformation), I had surgery to place the port that would receive the chemotherapy scheduled to enter my body over the next few months. February 9th marked the first infusion and today April 12th, marked the fourth. I told myself I would not share this information publicly until all six sessions were complete and I knew I had conquered the task I perceived most difficult in this journey. I had fear of chemo's effects on my body. I had fear of others' perceptions of my ability to fulfill my impassioned obligations. I had a fear, above all, of the unknown path ahead of me.

    Over the past few months all of this has changed.

    I've been reminded of the importance of slowing down, taking care of myself, and receiving back the love I put out into the world. I have physically and spiritually witnessed the power of collective positive consciousness through this journey of healing. I am living proof that holistic Eastern practices integrated with modern medical advancements, and the power of positive thought, visualizations, prayers, and meditations practiced individually and with one's circle of loving support, together yield exceptional results. Intuition combined with attitude is everything.

    This aggressive, fast growing, "triple postive" tumor disappeared to touch after only one chemotherapy session. Last week during my midway chemo check up it was confirmed via ultrasound the tumor was gone. My medical doctors are overjoyed and amazed by my progress as they now refer to me as a poster child for the "TCHP" chemo regimen.

    Today is an important day.

    Although a long journey still lies ahead, I do know one thing, I am here to challenge the face of cancer. So many of my fears were based on how I knew and saw cancer in my mind's eye, exactly the way society placed it there.

    What face do you see when you close your eyes to the word Cancer?

    We are all not doomed and gloomed. We do not always wear the face of death.

    We are full of life, health, heart, and sun no matter how difficult or positive our journeys.

    The face of a cancer patient can also look like this.

    image

    IMAGE: Left: Feb 9th | day of the first infusion. Right: March 31st | the week before the fourth infusion and they day it was confirmed that the tumor is gone. There are two more chemotherapy sessions to complete, a lumpectomy, and 6 weeks of radiation AND the entire way through I will curse cancer's old scary face because this too is what cancer looks like!"

    Sending you love, light, and peace as you make your way through this journey.

    Sincerely,

    Neda

  • BarredOwl
    BarredOwl Member Posts: 261
    edited August 2016
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    Hi Anush:

    I am very relieved to hear you have started treatment and are doing okay so far.

    Recurrence rates may vary based on the drugs received, tumor size, lymph node status, etcetera. You should not hesitate to ask your doctors to explain your estimated recurrence risk (local and distant), and by how much each treatment may reduce one or both of those risks.

    People here can direct you to other threads or useful information if we know more about your situation. Factors such as histology (e.g., ductal, lobular, etc), actual or estimated tumor size, lymph node involvement, ER, PR, and HER2 status, tumor grade, as well as age and menopausal status are useful information to share, if you are comfortable doing so. Planned treatments are also useful information (surgery, radiation, specific drugs).

    Are you receiving drug treatments prior to surgery (i.e., "neoadjuvant chemotherapy")? What drugs are you receiving? For HER2+ disease, "TCH" which is docetaxel, carboplatin and trastuzumab (HERCEPTIN), is quite common here. Or elsewhere, perhaps a FEC-based regimen plus trastuzumab and a taxane (docetaxel or paclitaxel)?

    If you wish, you can share such information in a post or in the profile section.

    As mentioned above, you may wish to check out the HER2+ (Positive) Breast Cancer Forum here:

    https://community.breastcancer.org/forum/80

    BarredOwl

  • dragonsnake
    dragonsnake Member Posts: 24
    edited August 2016
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    Dear Anush,

    I'm so glad that you started treatment. It's just amazing that someone kind and generous stepped in to help you. As a fellow survivor of the Soviet Union collapse myself, I can relate to your anger and frustration over the struggling economy and the ways our countries are run after gaining independence (not that it was good before that). I know that the burning question for you is the disease-free survival statistics in the absence of chemo treatment or with an incomplete treatment. I really do not know if such statistics exists because most women here receive chemo. The place to look for it might be Russia, but I doubt that there are registries there that keep tracking of bc patients. In any case, something may have been published in Russian medical journals, but I think that you already thought of that.

    Sending you healing thoughts.