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After 9 years ... I have been released from Herceptin!

JeninMichigan
JeninMichigan Member Posts: 51

Hello everyone

I have not posted in a while but wanted to give an update. My oncologist who has treated me for the last 9 1/2 years abruptly resigned last month. I decided to get another opinion at the University of Michigan and today met with this oncologist. She is the head of clinical research there and I was very impressed. I googled her to death before meeting her and read many of her abstracts. I have been NED now since June 2008 and have been on Herceptin only for about 9 years. It was her opinion I may well fall into the very small percent of curative patients. She said at this point it is very likely that the Herceptin is not really doing anything for me and that there are probably not cancer cells for it to target. No one knows for sure and she cannot tell me with certainty I am cured but she has several other patients like me who after a period of time stopped herceptin and have not had it reoccur in anywhere from 5 to now 15 years later. I have taken the leap and after my next infusion, I am going to stop the Herceptin. I won't say I am cured because I don't believe that but I want to be free from the infusions and the financial burden. Just wanted to share this with you all.


Jen

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Comments

  • moderators
    moderators Posts: 7,685

    Jen, this is wonderful news!! Thank you for sharing! What an inspiration you are -- we're sure many here will feel the same.

    Celebrating with you -- cheers!

    --The Mods

  • artistatheart
    artistatheart Member Posts: 1,437

    Fantastic Jen! I'll raise a glass to 90 year old you!

  • 50sgirl
    50sgirl Member Posts: 2,071

    HOLY COW, JEN! I am crying tears of joy for you. I applaud you for taking that leap. I know that we can never use the word cure, but this is about as close as you can get. WOOHOO, WOOHOO, WOOHOO. I cannot even begin to tell you how happy I am for you. What a relief it will be for you to be free from IV's for the first time in so many years. Happy dance!! Please update us from time to time. We will continue to think about you. I join Artist in toasting to the day you turn 90.

    Big smiles and hugs from, Lynne


  • cure-ious
    cure-ious Member Posts: 2,705

    WOW, Jen!!! We all hope to one day say this!!! If that isn't the best reason to go get a second opinon, I don't know what is!!

  • Kandy
    Kandy Member Posts: 424

    Wonderful news. I'm thrilled for you.

  • LindaE54
    LindaE54 Member Posts: 1,379

    Jen - awesome news!

  • illimae
    illimae Member Posts: 5,519

    Wow! That is amazing news, although I imagine it might be difficult to process such a thing, seems like a dream. I hope to post something similar one day. Congrats again

    image

  • divinemrsm
    divinemrsm Member Posts: 5,896

    WHOA!!!!! Wow, oh, Jen! That sounds like a fascinating appointment you had wih your new oncologist, to have someone look at your medical issues with fresh eyes. That is great to hear, very inspiring, and I am so happy for you!

  • tina2
    tina2 Member Posts: 753

    Brava, Jen! You must be giddy with happiness and relief and a sense of unreality. Nine years! What are you going to do with all that time you used to spend in a chair, hooked up?

    I hope you adjust quickly to your infusion-free life. Enjoy it all!

    Please stay in touch with us.

    Tina


  • Beatmon
    Beatmon Member Posts: 617

    Wonderful, Wonderful

  • AnimalCrackers
    AnimalCrackers Member Posts: 542

    Thanks for sharing your good news! That is awesome! So very happy for you! YAY

  • stagefree
    stagefree Member Posts: 360

    dear Jen,

    Such great news! Needs all kinds of celebrations, my imagination can't think of right now!!!!

    Hugs & love

    Ebru

  • annieoakley
    annieoakley Member Posts: 653

    Jen, this is such great news! I am so happy for you!

  • JFL
    JFL Member Posts: 1,373

    Wow, this is just amazing. Incredible! I hope you never have to look back after you drop herceptin. You give many people hope that the course of this disease can change with all of the advancements coming out every day.

  • Groovywilma
    Groovywilma Member Posts: 47

    That's incredible! Wishing you all the best! Continue living and enjoying your life! Woo hoo!

  • heidihill
    heidihill Member Posts: 1,856

    Crying tears of joy with 50sgirl. Wishing you the best Herceptin-free life. Woohoo 

  • dawny
    dawny Member Posts: 588

    woohoo!


  • Bad_At_Usernames
    Bad_At_Usernames Member Posts: 241

    Yay! So happy for you!

    Will you continue to get an annual scan or no scans unless symptoms???

    To add: what JFL said. Herceptin has not been my miracle drug, but this gives me hope my own curative drug is out there, maybe another spunoff from Herceptin. My onco has been talking about a "super TDM1"..

  • bestbird
    bestbird Member Posts: 232

    Absolutely wonderful! Congratulations!

  • susan_02143
    susan_02143 Member Posts: 2,394

    Really astonishing..... Congratulations.

  • jacque1102
    jacque1102 Member Posts: 14

    Oh Jen,

    Words cannot convey how truly happy I am for you. Enjoy the next chapter of peace, tranquility, and joy with your health, children, and partner.

    Peace to you forever,

    Jackie

  • cnanthia
    cnanthia Member Posts: 8

    Congratulations! I've been on Herceptin 10 1/2 years and cancer free but don't feel comfortable making the decision to stop.

  • JeninMichigan
    JeninMichigan Member Posts: 51

    cnanthia - I know exactly how you feel. Until this appointment, I have not felt the comfort level to stop. This is in part because my oncologist at the time was too on the fence. She would always say at 10 years we will talk about it. When I saw the University of Michigan doctors, we talked at length about evidence collected from other cases that has collected and provided this direction. Just in January this year, they she along with several others published the result of a study they did on HER2 metastatic cancer and following a collection of woman who stopped herceptin. The results were very positive and led them to believe that in certain cases of her2 positive disease, some patients can be brought into a curative state. While I cannot convince myself this is cured, I do believe the herceptin is not what is keeping the disease in check and neither does she. She mentioned if I had active cancer cells, they would have found their way around it by around it. This is why it is great that we continue to participate in studies for exceptional responders and outliers. I am taking a leap of faith but for the first time, I feel pretty secure about it.

    I will probably not be getting scans unless I have symptoms. it was starting to get like this before I considered stopping. After so many years of NED, the insurance does not want to pay for even a C/T.. My oncologist had to make a up a reason as I wanted one for my own pieces of mind.

    The told me at UofM they are working on a highly sensitive tumor marker test. She said what we have right now is not a good tool.


    Jennifer

  • margaritams
    margaritams Member Posts: 183

    Congratulations, Jennifer! That is really fantastic news. You give me hope that my current NED status can persist. I reached NED two years ago after my first taxol treatment but when on herceptin and perjeta only, I experienced progression. Another round of taxol and I got to NED again. I've maintained it for two scans now while on Kadcyla. Hoping to keep it up for a very long time. Incidentally, I am also treated at the U of Michigan. I have lots of confidence in the team and your story only increases it. Best wishes to you and please check in from time to time as you will no doubt continue to inspire those of us inactive treatment! ~Margarita

  • scrunchthecat
    scrunchthecat Member Posts: 138

    Congrats, Jen! The HER2+ ladies salute you.

  • melmcbee
    melmcbee Member Posts: 371

    Jen this is amazing news and I am si happy for you. This gives us more hope. Congratulations

  • gitalen
    gitalen Member Posts: 2

    thanks for shearing. This really gives hope for BC community


  • Strong65
    Strong65 Member Posts: 36

    Congratulations! I recieve herceptin and perjeta, will by 3 years out in November. Have been NEAD for most of this time. The oncologist has talked about dropping the Perjeta as I've basically outlived how long they say it helps maintain this status. I've refused to let them drop it, she did say they could add it back in if things go south, did they say this about herceptin as well?

  • JeninMichigan
    JeninMichigan Member Posts: 51

    Luv2fish. What my oncologist has said in the all the year's past is that they truly do not know if the Herceptin is what is keeping me NED. I was always asked "are you willing to take this risk?". When my regular oncologist left the practice abruptly this summer, I went up to the University of Michigan. I met with the head of clinical research and she was involved in a study which ended in January this year. The result of the study showed that there are curative cases of HER2 metastatic disease wherein they believe the first line treatment along with Herceptin achieved complete eradication of the cancer cells and that long term treatment with Herceptin was providing no further benefit. She said all they have are these case studies showing cancer free survival for 5-15 years once off Herceptin. If was her belief that the Herceptin was providing no benefit for me. We did not discuss if things go south but I have to believe this would be an option. They just don't know for sure which makes this feel risky.

    Jennifer

  • lauriesh
    lauriesh Member Posts: 82

    my onc said the same thing to me. I stopped herceptin 2 1/2 years ago and I am still Ned. He thought herceptin was probably not providing any more benefit. We did discuss what would happen if the cancer reoccurs and I would start with herceptin and perjeta alone to see how that would work.

    Good luck Jen