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Her2+ stage IV: What´s ahead?

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ADDK
ADDK Member Posts: 70

Hello everybody,

Recently diagnosed stage IV/metastatic shortly after finishing treatment. My cancer is either extremely aggressive and/or I´m resistant to Herceptin.

I´m single, 56 years old, live alone and have a full time job that I love (worked through treatment), and (still) fit.

I would really appreciate if other HER2+ girls would share their insight on what´s ahead of me.

Did you have to quit your job or work part time? If so – at what point of time? How do you cope with day-to-day-matters? I have a large house and garden, and wonder when I will either need help or have to move.

I know that we are all different and respond differently to treatment. Still, I would be grateful if you would share your experience with me.

Thanks a lot!

Comments

  • illimae
    illimae Member Posts: 5,617
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    Hi there, I’m HER2+ and work full time with mets to bone and brain. After completing my initial chemo, surgery and radiation, I now have H&P every 3 weeks. Everyone is different but I still remain pretty active (10,000 steps/day) and have no problems taking care of my house, husband and dog. I do plan to medically retire soon but that is mainly do to the brain mets and how they affect my work, which is very intellectually demanding. There’s a Herceptin and Perjeta thread here to discuss SE’s but most have minor or no issues with the treatments.

  • ADDK
    ADDK Member Posts: 70
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    Illimae, grateful for your reply. Thanks a lot!

  • JeninMichigan
    JeninMichigan Member Posts: 51
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    Hello.  

    I was dx with mets from the start - Liver & bone in 2008.   Luckily, Herceptin worked very well for me and I was NED after three chemo treatments including Herceptin.  I took Herceptin ever since for over 9 years and remained NED.   Coming up on one year ago, I stopped taking Herceptin completed and currently am not on any treatment.    I continued working the entire treatment time but being a single mom I didn't have much choice.   Today, I am in the best physical shape of my life and very happy.  Not everyone has this success with Herceptin, but there are several HER2 targeted therapies and hopefully one of them will be equally successful for you.  My cancer was very aggressive.   In four weeks I went to no visible mets on c/t to four sizable tumors on my liver, most of my right ribs, left hip and several chest nodes picked up on a pet scan before I started chemo.     Best to you. 

    Jen

  • illimae
    illimae Member Posts: 5,617
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    Yay Jen, do you think H&P were the primary reasons for your great response or biology or complementary things like supplements, diet, exercise, etc.?

  • JeninMichigan
    JeninMichigan Member Posts: 51
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    Illimae -  I think Herceptin was primarily the driver because my mets showed up so quickly and so many and they also resolved completely so quickly.   However, I do believe that diet, exercise and supplements have played a big role in keeping me cancer free.   Since diagnosis I have also been under the care of a naturalist. For the last 7 years, I have exercised vigorously and faithfully 3-5 days a week every week. While I don't go crazy with my diet, I have not eaten fast food in over 10 years and generally eat organic and pretty clean.   I give Saturdays as a cheat day.     Boy it is hard to say for sure what keeps one person from progressing and others do.   I give 95% credit though to Herceptin.   The rest of it is building my body to be as healthy as possible to keep the beast away.  However, as we all know, it also does what it wants when it wants which is why supporting research is so important.    

  • illimae
    illimae Member Posts: 5,617
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    Thanks Jen and I agree, especially with regard to exercise 😀

  • jacque1102
    jacque1102 Member Posts: 14
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    Hello. I was diagnosed with mets from the start to my liver; one large 4.6 cm. I was on THC for 6 rounds, had an MRM, radiation for 33 rounds, just on Herceptin, and then on H & P from August 2012-August 2017. I have been on Herceptin along since September 2017 to current. I continued working fulltime in a hospital which I loved. My work week was typically 60 hours perk. My hubs and I do not have kids. I continued working because I enjoyed working and I cover our health insurance. I work out 3 times a week and eat a plant based diet. I do take suppllements as well. For being 55 years old I am told I look pretty good for my age even with the whole cancer treatment every three weeks. This cancer deal is tricky as indeed we are all different. I agree with Jen that ongoing research will be the key to this mystery. I give credit to the Herceptin for my longevity. Hope this helps. Cheers,

    Jackie