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Looking for Her2 Positive survivor stories

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  • Youngwithbc
    Youngwithbc Member Posts: 45
    edited June 2015
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    Congrats Jill!

  • Leighku
    Leighku Member Posts: 1
    edited June 2015
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    I do not have Her+, but my dear friend who helped me through my journey did. She is almost 11 years out. Had stage 3c....large tumors and many LNs (exploding with cancer). She was pregnant at the time and assumed it was milk duct issues. Herceptin was just coming out and saved her life. NED ever since surgery. She knows lots of survivors that were fortunate enough to have Herceptin save their lives. It truly is a miracle drug.




  • suladog
    suladog Member Posts: 837
    edited June 2015
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    Congrats Jill, great to hear!

  • CassieCat
    CassieCat Member Posts: 863
    edited June 2015
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    Thank you all for sharing. I hope more will chime in!

  • Freygea
    Freygea Member Posts: 217
    edited June 2015
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    WoW! These stories are amazing. Jen you have giiven me HOPE!

  • Pbrain
    Pbrain Member Posts: 773
    edited June 2015
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    I'm almost at 3 years. The fears slowly fade, but will never go away. They just become more manageable. Many hugs! Oh, and I found it very odd, but at the beginning of my journey, the very first day I met with my onc, I had a nurse doing my intake. She asked what my receptor status was. I told her ER/PR+. She then asked if I was Her 2+ and when I said yes, she gave me a thumbs up and a high five. Now how far have we come? :-)

    For now, I have a nutribullet and do vegetable/fruit smoothies for breakfast. I was already a vegetarian at diagnosis, but that doesn't mean I ate well. It was just and excuse for more carbs and cheese...so I'm trying. I've lost 22 lbs at Weight Watchers, and still struggling to lose more.

  • youngsurvivorsister
    youngsurvivorsister Member Posts: 1
    edited June 2015
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    Hello,

    I know the feeling when every ache and every pain makes you think of metastasis, I have been there and still catch myself thinking about it.

    As the years pass, you fear less and live more, it does get better with time..:).

    Hang in there !!!


    Dx in Nov 2009 @ age 31. Stage II A.

    Crossed by 5 year mark last year.

    Happy and healthy...:)

    Blog: https://youngbreastcancersurvivor.wordpress.com


  • Fitz33
    Fitz33 Member Posts: 123
    edited July 2015
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    In 2 months I'll be 5 years out! Still on the AI ...

  • cowgirl13
    cowgirl13 Member Posts: 778
    edited July 2015
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    I'm 6 years out and feeling great! I am on my second 5-year round of Arimidex...without any side effects.

  • lago
    lago Member Posts: 11,653
    edited July 2015
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    Just found this thread. I'm almost 5 years from diagnosis and still NED. Started on Anastrozole switched to Exemestane a little over a year ago.

    Congrats to everyone

  • sheila888
    sheila888 Member Posts: 9,611
    edited July 2015
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    I'm 10 years & 3 months out

    I took Femara for 5 years from March 2006 to 2011

    Doing well.

    Congratulations to all

  • AliceS
    AliceS Member Posts: 74
    edited July 2015
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    To Jill, Leigh, for her friend, and Fitz---Congratulations!!!! SOOOO happy for you. I have a similar diagnosis and YOU GIVE ME HOPE--thank you-- still have 4 months of Herceptin and will be finished with treatments and then just to HOPE and PRAY--and try to live a healthy lifestyle I guess is all one can do. Would love to hear more success stories--

  • MANORAMA
    MANORAMA Member Posts: 4
    edited July 2015
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    mine is same as yours .Diagnosed in oct 2014 ,masectomy, 8 cycles of chemo now 2 cycles of herceptin over . The fear of recurrence is there. Pray to God

  • gcinny
    gcinny Member Posts: 2
    edited August 2015
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    It's so good to hear the her2 pos BC positive stories :) I was just diagnosed 2 months ago at age 26 which was quite a shock. The word "very aggressive" about her2 pos terrifies me everytime I have to read or hear it. it chills me into a panic fit. I started chemo and trying to keep my job as a research assistant and graduate student going but it's proving to be hard to keep the motivation and spirit and energy...

  • moderators
    moderators Posts: 8,177
    edited August 2015
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    Welcome to our boards lavender89. We are very sorry to hear about what you are going through, especially at such a young age. We're here to support you and hope that you can continue your graduate school !!


  • suladog
    suladog Member Posts: 837
    edited August 2015
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    I like all of you on here with time under your belts. I'm 25 years out from Triple Negative , but this time I was Triple Positive and HER2 really scares me. My tumor was small, only 7mm no nodes but then I hear people say that doesn't really mean anything that HER2 can jump all over the place and it scares the crap out of me. I like seeing all of you NED after time, I finishe herceptin at the end of Dec and I'm scared what happens then. Even though I've done this before each time is different

  • DSW1976
    DSW1976 Member Posts: 34
    edited August 2015
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    Just wanted to say thank you to the ladies for posting there stories and giving us who have just started this journey hope when we here alot of bad things. It really scares me that I can't find much on tripple positive stories but I tell myself they got thru it and never looked back. Thanks again you all are making a big difference in many people lives.

    Diane

  • Stephmoen
    Stephmoen Member Posts: 184
    edited August 2015
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    have you seen the triple positive thread there are lots of women on there I feel lucky we have so much to combat our disease anti hormonal and targeted therapy perjeta and herceptin

  • Sweettooth
    Sweettooth Member Posts: 1
    edited August 2015
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    Hi to everyone here. I also have a story, so far it is one of survival, but I am still optimistically cautious. Here's my story:

    In March of 2011, I found a lump. It happened to be at a time when my hubby was working out of town so I decided to catch up on some outstanding chores - spring cleaning, finishing some sewing projects, getting together with some friends that I hadn't seen for a while, and oh year, a breast self-exam. As things would go, I did find a lump. I had previously had mammograms regularly and was not due for my annual mammogram for another two months. I hummed and hawed over the weekend I was overreacting and should wait for my mammogram, or whether I should deal with it right away. There is a learning point here that I would like to emphasis:

    Learning Point #1: Do regular self exams. Even though the statistics indicate that they are not necessary anymore, if I had not done a self-exam, it would have been too late.

    On the Monday, following the initial weekend, I had a moment at work, so called my doctor. I explained that I had perhaps found a lump and thought maybe I should have it checked out. He booked me for 1:00pm that afternoon. He confirmed a lump and I started the process for confirming breast cancer the following morning.

    Learning Point #2: Even if you are doubtful about having a lump, or the possibility of having breast cancer, be sure to have it checked out. Better to be safe that sorry.

    The following two weeks confirmed breast cancer and I began the long journey of treatment and recovery. But more on that a bit later.

    I work in a university faculty that teaches and researches health related issues. One of the researchers in the faculty does research into women's health and coincidentally had been diagnosed with breast cancer the previous year. I asked her if she would meet with me to discuss the process and what I could expect to happen. She was delighted. During our meeting she described her experience and decision points that she encountered and how she made the decisions that she did. However, being a researcher, herself, she told me that it was difficult to give me specific information since everyone is different, but she did give me one piece of advice that I will pass on.

    Learning Point #3: If you have a chance to participate in a research project. Take advantage of everything in which you qualify to participate. My first thought was that she would encourage participation because she is a researcher, but she did qualify her statement by adding: You will not get better care by not participating in a project, but you will receive better follow-up.

    Within a month of my diagnosis I underwent surgery and a radical mastectomy including the removal of 12 lymph nodes. Following that, I met with my oncologist who happened to be the head of the breast cancer unit in the hospital in my area. He advised:

    • When the lump was first measured during ultrasound, it was approximately 2.5 cm. At the time it was removed exactly one month later, it was 10 cm.
    • The cancer is HER2 positive (which meant nothing to me at the time).
    • It is the most aggressive form of breast cancer there is and we are not sure it hasn't metastasized.
    • There would be some addition testing to determine metastasis. If the cancer had not metastasized, I would be given a treatment protocol that would focus on a cure. If it had metastasized, I would be given a treatment protocol to prolong life.

    I pretty much quite listening at that point. Needless to say, the next month was very stressful, but at the end of the month and the additional tests, it was determined that the cancer had been caught in time and the treatment protocol would be aggressive and focus on a cure. As many of you know, the treatment involves radiation, chemotherapy and numerous other procedures. I had some complications that I won't go into because they aren't relative to this blog, but it seems like I was busier being sick than I had ever been as a well individual.

    One of the drugs given to me during chemotherapy was Herceptin. It was explained to me that one of the side effects of Herceptin is congestive heart failure. Fortunately, I was accepted into a research project that was monitoring the effects of Herceptin on heart function. During the following year I was given 2 echo cardiograms and 4 cardio MRIs as part of the project. For me, this removed a bit of stress from the possibility of developing heart problems since I was given a clean bill of health after each session. If not for those, I would have stressed about every little thing that happened over the year. In addition, I have access to these researchers to ask heart related questions for the rest of my life. As an aside, the nurse practitioner involved in the research project is now a professor in the faculty in which I work.

    This next section focuses on a side effect of treatment that some people may acquire, but I think is important to know right from the beginning. During my radiation sequence, I was sent to an educational session on lymphedema. It was explained there about the effects of surgery, lymph node removal and radiation and the possibility that lymphedema could develop. Yes, I had noticed that my arm was getting heavier, and sure enough, was diagnosed with lymphedema. This diagnosis involved another set of medical issues that needed care. My lymphedema has never been at a critical level, but I will explain my scenario, since it leads up to an important learning point.

    At the time I was diagnosed and measured, my fluid level was rated at 19%. Still mild, but it is enough for the size difference in my arms to be noticeably different. I underwent the initial 4 layers of wrapping for three weeks and it was determined that my base fluid level was 11.9% and it would really not get much better. I was prescribed with a compression sleeve that was to be worn during the day, then taken off and nothing worn overnight. A simple philosophy is that during the day, you are using the arm and fluid can build up during the day, but at night, with inactivity of the arm, the fluid will continue to drain. I purchased the prescribed sleeve and diligently wore it for the next three months. After three months, I was measured and the fluid level had increased to 15%. Clearly the compression sleeve was not working. I went back to the four layers of wrapping for four weeks to see if I could get the lymph fluid reduced

    At that time, nurse practitioner from the heart research program came to visit during one of my chemotherapy sessions. As we were chatting about my lymphedema problem, she advised me that she had a friend who specialized in lymphedema and was starting a research project. She passed on her contact information for me to call to see if I qualified for the study. I met with her the day that I had the four layers of wrapping removed, and found out that I was a prime candidate for her study. When my arm was measured that day, it was at 11% fluid level. I entered the lymphedema study that lasted 4 months. The research project was studying the impact that wearing a nighttime lymphedema garment would have on lymph fluid build up. I was issued with a nighttime garment and given instructions on transitioning into wearing one and given appointments to return for re-measuring.

    During meetings with the researcher, I picked her brain about lymphedema. Here are some learning points that I picked up from random conversations:

    Learning Point #4: I wanted to know why my lymph fluid increased when I had diligently worn the compression garment that was prescribed. She looked at the compression garment and advised that the fabric from which is was made was originally designed for venous edema and had too much stretch for lymphedema. She further explained that, with venous edema, there was still a pump - the heart - to assist with pumping fluid, but with lymphedema, there is no pump. Of course, I asked what I could do. She advised that I should be wearing a custom made compression sleeve, not the variety that is sold off the shelf. I did go to purchase custom made sleeves. They are heavier, more rigid and made to fit the specifications of my arm. A little more uncomfortable, but accomplish what they are meant to accomplish.

    Learning Point #5: The researcher advised that lymphedema is not just a result of having lymph nodes removed and is not always immediate. Lymphedema can be the result of any type of trauma to lymph nodes. She advised that her husband had a mole removed from his leg which resulted in some minor problems with lymphedema. Soooo, the learning point involves knowing that, even after breast surgery you are at risk of developing lymphedema. Do some reading and ask lots of questions. For instance, the physiotherapists that I see advised that they see many ladies develop lymphedema years following flights of 4 hours or more due to the change in air pressure. This can happen even years after breast cancer. From my experience, I wish that I had known that I was at high risk from the moment of surgery. I often wonder if I could have taken action that would have prevented the development of lymphedema. Unfortunately, I will never know

    Learning Point #6: With lymphedema, I was advised to carry nothing over 10 lb. I find that difficulty since my lymphedema is in my dominant arm. The research advised that it is safe to limit the amount of carrying one does with the arm, however, it is not essential. The only essential part is that you must build up to carrying larger amounts. For instance, if you limit your carrying to 10 lb., then decide to got canoeing, you have a recipe for disaster. However, if you train to do that a maintain the amount of weight that you are lifting, there is not problem. The mantra to lift more is start low (light) and proceed slow.

    Learning Point #7: Don't get lymph nodes transplants. I must qualify this...for lymphedema that is severe, this may bring some mild relief. The typical process is to remove lymph nodes from the groin and transplant them under the arm. This may increase the activity of the lymphatic system in the area, but increases the risk of developing lymphedema in the limb where the lymph nodes were removed and may result in lymphedema in two limbs, not just one. However, she was advising that there are clinical trials at the present time where they are performing lymph node bi-passes. This may be viable since it would remove the lymph fluid from the system much faster. For those suffering with lymphedema, watch for the studies and results on this.

    That is my story. I am blessed to have survived the type of cancer that I had...now into my fifth year of survival.


  • moderators
    moderators Posts: 8,177
    edited August 2015
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    Dear Sweettooth, Thank you so much for sharing your story and experiences. It sounds like you have been a good advocate for yourself and have done a lot of good research yourself to forge your path. We wish you the best in your recovery and hope that you will stay connected here with this supportive and knowledgable group of others with shared experiences. The MOds

  • debic
    debic Member Posts: 4
    edited August 2015
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    I was you 7 years ago. Same dates down to the last herceptin. I spent many hours on this site getting support and advice. This was my lifeline. The thing that is hard to believe right now is in time you will move on with your life and a time will come when you don't think about breast cancer every minute of the day. The day after my last herceptin treatment I was in the delivery room when my first grandchild was born, since than I have seen two more grandchildren born! I have been blessed with much happiness and have learned to appreciate it more. The reason you don't see a lot of post from people 7,8,9,10 years out is because they are busy living their lives. I recently had a health issue Not related to breast cancer which made me think of all the love and support I got on this site and felt I needed to pay it forward and tell you it will get ok. Life can be great after breast cancer.

    I was in a group on this site with five other amazing ladies who to this day stay connected through Facebook.

    Debi



  • AliceS
    AliceS Member Posts: 74
    edited August 2015
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    Debic--what was your diagnosis?

  • debic
    debic Member Posts: 4
    edited August 2015
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    Alice

    I too live in Florida .

    Dx 2/14/07

    Left breast 1 cm

    Stage 1 Grade 3 er/pr ++ her2+

    Lumpectomy, chemo ACT,radiation herceptin 1 year 5 years arimidex

    It does get better I promise.


    Debi

  • CassieCat
    CassieCat Member Posts: 863
    edited August 2015
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    I got a clear mammogram this week, so I'm coming up on one year now since diagnosis with no sign of disease. I hope to come back to this thread for many, many more years to come and say the same thing! I have what I believe is my final Herceptin next week. I'm so grateful to have that as a treatment option. Tamoxifen has been fine for the past 4.5 months or so.

  • Yoshi_Falls
    Yoshi_Falls Member Posts: 8
    edited August 2015
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    I was recently diagnosed. I was put in contact with a Her2+ 'survivor' for support by my local cancer society. She had a 5cm+ tumour and 15 out of 25 lymph nodes positive. That was over 7 years ago and she is still NED. She had chemo and a year of herceptin. I am not sure about hormone treatments if any. I found her story very inspiring and know that it made me hopeful so wanted to share it here.
  • AliceS
    AliceS Member Posts: 74
    edited August 2015
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    Thanks for responding, Debic--amazing that you get on this website regularly still--I probably will too. Very comforting to know others share the experience and they're coping well. I just tell friends I'm fine (and I feel great!). Am very confused about different types of BC. My oncl said mine is not hormone sensitive at all and some people have a combination (many subtypes), so guess that's why no arimidex for me, which must be a type of Tamoxifin? My ER and PR are both - instead of +.

    Was diagnosed last fall and in total shock, thinking how healthy I was--exercise, good weight, etc. Now better at dealing with it all and getting on with my life, but think about it every day. Hope I do well as it looks like you have, :) Not putting things off that I enjoy...just in case! Very scary stats--and so much worse than being "estrogen positive", which 80% of BC women are. Found this lump before my regular annual mammogram and already stage 3a.

    Interesting that you are in FL, also. Enjoy! Life is good--

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited August 2015
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    I have had 14 of 18 herceptin / perjeta infusions and may have to stop short of the full year of 18 due to heart damage. I am very concerned about the increased risk of reoccurance. Anyone here have to stop early and still ok? Love, Jean

  • AliceS
    AliceS Member Posts: 74
    edited August 2015
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    Jean--Check out under Search Members: Denise-G and read her DX, treatment, etc. She had the same problem several years ago and is cancer free. She was Her2 ER+PR+ , Stage IIIa (Triple Negative, I think) so a little different than we are but similar situation.

    Best wishes to you--

    Stephanie

  • lago
    lago Member Posts: 11,653
    edited August 2015
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    zjrosenthal I too am triple positive. I didn't have to stop but when I was treated Perjeta wasn't approved. I will be celebrating 5 years NED in 2 weeks. You got most of your treatments. Also doing Femara will also greatly reduce your risk of recurrence.

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited August 2015
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    Thanks for the encouragement dear ladies. I am on a 3 week vacation from femara,at my chemo doc's reccomendation to see if it is,causing my severe joint pain. If so she will switch me to a different AI. Limping through life at the moment. Love, Jean