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Newly diagnosed stage IV triple positive

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kimt179
kimt179 Member Posts: 13

I am 43 old mother of 13 and 9 year old girls and former police officer who was recently diagnosed with stage IV Breast Cancer. In the last two month I had a mammogram with a biopsy performed same day, been to a surgeon, received my pathology reported saying I'm triple positive with undefined cells, and told I was stage 2 with high survival rate. Then called into to our local oncologist to be told that the routine body CT revealed I have mestasis disease in my lungs and liver and am Stage IV. My husband and I flew to Houston from Detroit for a second opinion at MD Anderson. All of that after a cleared mammogram in Aug of 2016.

I was shocked by the diagnosis, I had mammograms starting at 30, 35, and every year after turning 40, due to family history. A couple spots were biopsied and marked in Jan 2015, as non-cancerous. In Aug 2016, those markers had faint shadowing, which was believed to be scar tissue, not cancer. Finally, they discovered 2.5 mm tumors near the markers in Feb 2017

As I said I was shocked by the diagnosis, but even more shocked by one of the original statements an oncologist told my husband and I. She told us that on average, women with my factors will survive a year or two even with treatment. I then explained the following to her with a great sense of disapointment, but not in my diagnosis anymore.

I have had enough incredibly dangerous things happen to me over my 20 year career as a Police Officer, that I don't scare easily. In the last five years, in addition to a shoot out with suspect who shot a fellow Officer right in front of me, I had my knee severly bitten by a pit bull while chasing an armed robbery suspect into a backyard, I have injured my sciatic nerve taking a suspect into custody who outweighed me by 100 pounds.

Even worse, I had to also overcome a horrific scout car accident that ended my career with a traumatic brain injury, broken right hip socket, pelvic cradle breaks, and broken foot. I was told I would never walk without pain again, if at all.

I was in a wheelchair for 6 months, couldn't do conventional physical therapy because I couldn't stand or put weight on either leg for five months after my reconstructive surgery. I sought out and completed five months of aquatic therapy to keep moving without weight bearing in a pool. Then I had 6 more months of physical therapy 5 days a week to learn to walk again. Completed 2 years of cognitive therapy for my brain injury because of short term memory issues, emotional libality, and vertigo. Tell me what can help me and I commit 100% and never give up. I'm also the most positive optimistic person you'll ever meet with a strong faith.

I told her that if I were an anxious person with any type of negativity and despair, I may take 1 to 2 year average and give up.

I then asked her what the record for the longest survival with my factor would be because I intend to surpass it. I would not take average when I have spent my entire life exceeding expectations. There was no answer. She told me that she felt compelled to let me know the average survival rate.

When she left the room, the nurse practitioner told me that they have a patient with my similar factors who is still being treated after 10 years of her diagnosis. Thank goodness for those who are willing to give you hope. I was very pleased to find this site and see the support. I begin my treatment plan tomorrow and intend to live with cancer.

Comments

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    So Kim. When do you see your NEW ONCOLOGIST?

    https://www.nccn.org/members/network.aspx

    (Link to list of NCCN Institutions)
  • kimt179
    kimt179 Member Posts: 13
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    It was in Houston, my local oncologist in the Detroit area told me there's always hope and new meds. Both treatment plans were the same so I'm home to do treatment here. Sometimes the smartest aren't tge most kind.

  • pajim
    pajim Member Posts: 930
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    Since the current median survival time of HER2+ women is 5 years, and it's longer for ER+ women. Sure, that means half the women die before 5 years are up, but take a look at the survival data for the Cleopatra study.

    http://www.nejm.org/doi/full/10.1056/NEJMoa1413513#t=article

    I think she's crazy. Did I mention nuts? I just pointed you to the literature. Advice for anyone -- if a doctor says something like that, ask for the evidence on which they base their estimate.

    She may feel that because it grew fast it's a problem, but on the other hand you haven't been treated before, which always helps.

    Don't give up. knock those cancer cells dead.

  • Fitztwins
    Fitztwins Member Posts: 144
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    I live in Michigan too, I am going on 9 years as a triple positive. I know a lot of ladies long term. So, that is a BS statement.

    and I just posted a new article about how there someone newly diagnosed with today's meds average 5-10....

    Glad you told that doctor off.

    Here is the article

    http://www.curetoday.com/articles/advancements-con...




  • kimt179
    kimt179 Member Posts: 13
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    Thank you for the article, I appreciate it. The oncologist that told me that info was at MD Anderson in Houston where we went for a second opinion. My oncologist here works out of St John Providence Cancer Center in Rochester Hills. She is great and has been going out of her way to call every other cancer center nearby to find any new treatments or backup plans for any scenario that may come up while on my current treatment plan. We went to Houston because it was her suggestion to go to the #1 research hospital in case clinical trials come out that I can get into later.

  • Fitztwins
    Fitztwins Member Posts: 144
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    I am really shocked that the oncologist told you that. Anyhow, you have an awesome new doc, which I think makes the difference.

    We have so many drugs to try. The key is / if your cancer responds to therapy, then the outlook is very good.

  • kimt179
    kimt179 Member Posts: 13
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    Thanks Fitztwins,

    By the way I love that area of Michigan. We try to take a trip there every summer. All of the beaches and none of the salt or sharks.


  • shutterbug73
    shutterbug73 Member Posts: 284
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    Welcome from another Michigander. I live about 20 miles from Ann Arbor, and I was also diagnosed stage IV from the start, 6 months after a mammogram.

    I am appalled that your doctor said that to you! Many women have a great response to Herceptin, and 10 or more years is not unheard of. I am also triple positive, and Herceptin, Perjeta and Tamoxifen have kept me stable for 2.5 years with excellent quality of life. I plan on many many more, and so should you!

    Good luck with your treatment plan.


  • jackboo09
    jackboo09 Member Posts: 780
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    Kim

    My new onco told me about a patient who is now 13 years out and on Herceptin only. Hope this helps.

    Best wishes

    Liz

  • bestbird
    bestbird Member Posts: 232
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    I'm glad you have found this site, although I am very sorry for the circumstances that brought you here.

    The resilience and determination that have served you in the past will stand you in good stead with regard to mbc, and since your cancer is triple positive with many viable treatment options, there is every reason to believe you will do quite well for a long time to come!

    I too was misdiagnosed - twice. The first time for four years when the breast lump I found didn't show up on a mammogram or ultrasound (and felt "normal") to my breast surgeon, and the second time for four years when my chronic cough was misdiagnosed as GERD, asthma, and post nasal drip by 3 separate Ear, Nose and Throat doctors. By the time it was correctly diagnosed in 2011, I had lung mets, malignant pleural effusion, and malignant pericardial effusion.

    You will find wonderful information and support from participants on this website, and if you might wish to request my complimentary 134-page MBC Guide which contains comprehensive information about the disease as well as standard and supplemental treatments, please feel free to visit: https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_73

    With best wishes!

  • ssinuk
    ssinuk Member Posts: 63
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    apologies for crashing here, I am triple +ve 3C - but wanted to let you know Kim I have a friend Stage 4 de novo who is 13 years out and NED on Herceptin. Hope you don't mind me posting in your forum, justwanted to share an experience of hope.

  • SugarplumFairy2010
    SugarplumFairy2010 Member Posts: 13
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    Bestbird I was wondering how you were correctly diagnosed finally? I am a stage 2 survivor 7 years out with new onset throat pain, hoarse voice since last fall. I have 2 nodes on my lungs that are stable since 2014. An ENT just diagnosed me with left vocal cord paralysis and I'm waiting for an MRI. She said it must be investigated why the vocal cord is not moving

  • Wiegp22
    Wiegp22 Member Posts: 167
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    where in Michigan do you live?


    Paul

  • kimt179
    kimt179 Member Posts: 13
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    Thanks for the encouragement Shutterbug 73, we're not far away in Rochester Hills. I never doubted that the information that I got from that Dr was horseshit from the start. I had already decided that I wasn't excepting any stats or averages because I know I'll fight to the end. Good luck on your journey too.

  • kimt179
    kimt179 Member Posts: 13
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    Wow, I can't believe I have updated in over a year.

    Good news in my journey. I jave been NED for a year now and it appears I am one of the lucky ones that respond well to Herceptin. I was also kept on Perjeta to try and avoid resistance build up. Also had my ovaries removed and started taking Anastrozole.

    Hope those checking in as newly diagnosed with triple positive Metastatic Stage IV Breast cancer find hope in my story

  • beach4me
    beach4me Member Posts: 3
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    I was diagnosed with stage 4 Triple Positive in September 2018. The same year I had a mammogram in March which was normal. I was having pain in my hips and spine. Got an MRI which showed lesions in my spine and hips. This started the ball rolling with all the usual tests and biopsy. In the same month I started the targeted therapies of Herceptin and Perjeta. I'm also on anastrozole. The first PET scan after 3 months of treatments showed no disease in the bones and the tumor in my breast had shrunk. It is an extremely hopeful diagnosis compared to five or so years ago. I feel lucky the oncologist I go to knew the best method of treating the type of cancer I have.


    Like many it was a shock to get this diagnosis. I am a non-smoker, have a good BMI index, eat properly and have no one in our family who has had cancer. Plus, the mammogram was normal. I have since learned that many women who are post-menopausal will get estrogen related breast cancer and I am in that category.

    I was wondering if anyone on the targeted therapies of Herceptin and Perjeta have had some difficult side effects and if so, what they did to manage them. I have a petechial rash, episodes of extreme sudden onset fatigue to almost collapsing (platelets are in normal range) and difficulty sleeping. Those are the most annoying ones along with others that I can deal with. Hair thinning and very soft nails is a pain in the butt. I had lots of hair to begin with so I'm lucky there.

    I would love to hear from others who are on the same drugs and how they are doing.

  • beach4me
    beach4me Member Posts: 3
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    KimT113 - congrats on your year of NED. Can I ask how long you were on Perjeta?

  • moderators
    moderators Posts: 7,913
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    Welcome, beach4me! We want to extend a warm welcome to you, on behalf of our entire community. We're so sorry you find yourself here, but we're glad you've joined us, and hope you this to be a place of support and encouragement. And thank you so much for sharing your story - we know what a shock this diagnosis can be, but you are certainly not alone.

    The Mods

  • kimt179
    kimt179 Member Posts: 13
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    Hi,

    I have been having rash breakouts too with sleepless nights. I tried very hard to try and find a natural remedy, but have found two 25mg benadryl at night takes care of both the itching and sleeplessness. I eventually decided I needed to sleep more and have accepted that this is my best solution. Aveeno make an eczema lotion that works great on the rash for the daytime. Good luck!

  • kimt179
    kimt179 Member Posts: 13
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    I started treatment with Taxotere, Herceptin, and Perjeta in March of 2017. I completed 8 rounds of all three ending in September of 2017. They dropped the Taxotere chemo and I have been getting Herceptin and Perjeta every 21 days ever since. So I am still on and have been on Herceptin and Perjeta since the beginning of my treatment. My oncologist cited the Cleopatra clinical as a support in continuing on both of the targeted treatment drugs long term.

  • beach4me
    beach4me Member Posts: 3
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    KimT113 - thanks for the information. I will try the Aveeno eczema lotion. I have seen it and wasn't sure if I should try it for the rash. It helps to know it works - thanks so much. I wish I could use Benadryl or any antihistamine for that matter at night but it has just the opposite effect of drowsiness. It makes me edgy and nervous. I take 24 hour Xyzal in the morning for the antihistamine the doctor recommended for the rash. We have medical marijuana here in FL where I live. I use a CBD/THC oil at night and it is high CBD and low THC. I sure wish I could take a higher ratio of THC to have a nice, mellow sleep but like Benadryl it does just the opposite. I get paranoid and hyper. I am new to this diagnosis and still have trouble adjusting to all the new normals in my life. When I asked the oncologist how many treatments of Herceptin and Perjeta I would be getting he kindly said the words I will never forget; "every 21 days for the rest of your life." Wow...then I had to step back and think of everyone who has come before me and had the same moment. He did say to me that the targeted therapies were the new focus in breast cancer research and they refer to the diagnosis as a chronic manageable disease. Somewhat like diabetes, kidney failure, etc. A few days after hearing that sentence my husband and I were at the grocery store. I saw a man in a wheelchair being wheeled by what looked like his grandson. He had only one leg and had on a ball cap with a Viet Nam emblem on it. It made me think..now there is a person who had a "for the rest of your life moment". Whenever I have a rough moment - usually when I'm dealing with an uncomfortable side effect - I think of that man. Your story does bring hope and I am grateful to have found this group. You're a brave woman who has overcome many obstacles and you will overcome this one too. I was lucky to have an oncologist who right from the start as soon as the HER2 came back positive knew what to do. He said 5+ years but to not let that discourage me because every year they are coming up with new treatments. I read that years ago this diagnosis was 18 months survival and the new therapies have changed all that. From what I can tell Herceptin has been a game changer. I belong to a cancer support group at church and a woman in the group has been on Herceptin for over 10 years. There is hope. Thanks again for the information and I will try Aveeno. Oh, one more thing...I am originally from MI. Moved to FL in 1974. I was born in Muskegon and grew up in Bangor which is 10 miles inland from South Haven which is on Lake Michigan. I do miss the change of seasons!

  • santabarbarian
    santabarbarian Member Posts: 2,310
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    Kim, you have an unbelievable attitude! Thank you for sharing your story!

    I've never collared a perp or been through a car wreck, but I could really relate to your determination to live, and to push yourself to the far right of the bel curve. I felt the same way... those medians and averages include all kinds of people people who have underlying health issues, who are elderly, who smoke, etc.

    Being a healthy, strong person automatically puts you in a better position than the average. Jumping on it fast helps. Not doing other things to pollute your body helps. Being fit helps. Lots of things can push our recovery/survival stats a couple of points higher, and if you do them all you do yourself an enormous favor.

    Way to go! (And bravo to the NP who gave you that encouraging, empowering info!)

  • kimt179
    kimt179 Member Posts: 13
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    I haven't posted in awhile. Been busy living life with two teenagers. I am still NED after a recurrence scare back in December of 2019. I had some hypermetabolic activity on a Pet scan in my right lung and a couple lymph nodes nearby. My oncologist and I decided to switch treatment to Kadcyla. 6 months later, it had spread. They biopsied the farthest lymph node and discovered granulomas which indicated that it was Sarcoidosis. Another biopsy of the initial spot in my lung also indicated Sarcoidosis. Scary, but it's not cancer. It however, shows up the same as cancer on a Pet Scan. High doses of Prednisone stopped the spread and calmed down the enlarged lymph nodes. Best part is I no longer have the itchy skin like I had with Perjeta. One step back and two steps forward.

  • piggy99
    piggy99 Member Posts: 183
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    Kim, congratulations on the recent 4-year milestone and good luck with those teenagers!

  • olma61
    olma61 Member Posts: 1,016
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    Nice to see you here with four years NED. Read your original post up there, well, you are one tough lady and good for you for not letting the “meanie" oncologist be the last word on your prognosis.

    I'm also triple positive and August 3rd will make four years since finding the lump, October will mark my full four years in treatment. I am still on H&P and also NED for a full two years at this point. I'm starting the subcutaneous injections at my next visit, can't wait to be rid of the IV pole.

    I am also on an AI - are you doing hormone therapy as well

    We are fortunate to have good treatment options now for our aggressive sub type. I want the same to be developed for everyone with breast cancer and hope for more innovation to happen like...yesterday!

    Take care and thank you for sharing your experience


  • kimt179
    kimt179 Member Posts: 13
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    olma61 That sounds great. I am really interested into looking into getting away from the Intravenous Herceptin too. I'd love to hear how it works out for you. I just had a conversation with my oncologist about switching back to Herceptin only or even taking a short break from treatment. We are going to revisit the conversation in two months.

    And yes, I've been on Anastozole since I elected to have my ovaries removed post Chemo.

  • olma61
    olma61 Member Posts: 1,016
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    hi, Kim, last year at the start of the pandemic I started getting Herceptin in the shot (Herceptin Hylecta) plus a Perjeta infusion and that has gone well. Now I’ll be getting PHESGO, which is the combination of both drugs in one shot. My scans have been NED since the first switch so that’s a good sign.