Stage 4, HER 2 Positive, ER/PR Negative, currently NED

Options
Anonymous
Anonymous Member Posts: 1,376
edited March 2018 in Stage IV/Metastatic Breast Cancer ONLY
Stage 4, HER 2 Positive, ER/PR Negative, currently NED
· Share on FacebookShare on Twitter

Comments

  • Kblbmommy1
    Kblbmommy1 Member Posts: 3
    edited March 2018

    Hi there, I am new to this site. Question for you, I was diagnosed Stage IV in May 2018 with breast, lymph nodes and spot on liver. 6 rounds of Carboplatin, Taxotere, Perjeta and Herceptin. Lumpectomy and 11 lymph nodes removed. I am currently NED and coming to the end of my year of Herceptin (Pereta was added back in Feb 2018). I am interested if anyone on here is Stage 4, NED and Her 2 positive. Trying to decide whether or not to stay on Herceptin and interested what others with similar diagnosis is doing for treatment. Thanks in advance.

    · Share on FacebookShare on Twitter
  • Lauriesh
    Lauriesh Member Posts: 692
    edited March 2018

    most stage 4 stay on h & p for longer than a year. I stayed on for 4 years after getting to Ned.


    · Share on FacebookShare on Twitter
  • lindsay_a07
    lindsay_a07 Member Posts: 10
    edited March 2018

    I was diagnosed Stage IV HER 2+++ (Right breast, axillary lymph nodes and mets to liver) in November 2016. I received 7 rounds of Taxotere, Herceptin and Perjeta. I was NED in July 2017 and currently getting Herceptin and Perjeta infusions every 3 weeks.....indefinitely. I'm curious to hear what your doctor has to say about dis-continuing the HP treatment after only a year.

    And great news on that NED status!!! : )

    · Share on FacebookShare on Twitter
  • Kkrenz
    Kkrenz Member Posts: 100
    edited March 2018

    I am also Stage IV Her2+++ and currently NED after THP.  My Onc has told me that I will stay on H&P until I progress.  I know there are some ladies that have stopped after 7 or 8 years, but haven't heard about how they are now.  Hopefully, they will chime in.  I have only been NED since July of 2017 as well, so still a relative newbie.


    · Share on FacebookShare on Twitter
  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited March 2018

    Hello.  I was dx 2/2008 with mets to liver, bones and chest nodes.  Did six cycles of Taxotere, Carboplatin and Herceptin and was NED after three cycles.   I also did a year of Tykerb after.   I stayed on Herceptin for over 9 years and have been NED all the while.  Finally, July 2017, I stopped taking Herceptin.   Next week I will be getting a PET scan to check that everything is still good after being off.   Most with mets that are HER2 take Herceptin indefinitely.   I consulted with the University of Michigan Cancer Center and one of the oncologists involved in a study regarding exceptional responders discontinuing Herceptin.   Their thought was that there is no magic number when to stop.  My oncologist in Toledo said originally we could talk about it after 10 years.  The UofM oncologist suggested I was in a curative state and that Herceptin was no longer of benefit to me.    

    In my opinion, being in your shoes.  I would plan on taking it for several more years.    There have been some that stop it and it does come back and some that it doesn't.   It is a relatively easy drug to take by itself.  Expensive and inconvenient.  However, soon the patent will be up and you and expect the price will go down.  Also, it would be great if the subq injection that is available in Europe would be available in the states.   I would plan on hanging with Vitamin H for a while though. 

    Jennifer

    · Share on FacebookShare on Twitter
  • Kkrenz
    Kkrenz Member Posts: 100
    edited March 2018

    Jennifer - Thanks for chiming in....I knew you ladies were out there.  It gives me so much hope.  Please let us know how your next PET goes!

    · Share on FacebookShare on Twitter
  • lindsay_a07
    lindsay_a07 Member Posts: 10
    edited March 2018

    Thanks for sharing Jennifer! It's so encouraging to hear stories like yours. I don't think you mentioned it, but did you have any surgeries?

    Lauriesh--That's awesome that you were able to stop the HP after 4 years and still remain NED! How often do you have scans or follow-ups?

    · Share on FacebookShare on Twitter
  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited March 2018

    Lindsay - I did  have a lumpectomy and it was right after my lumpectomy before starting chemo that they did a pet and found my mets.   I was able to finish local therapy by having radiation too.   Although all the hospitals in Toledo refused to give me radiation because of my stage, my oncologist send me up to the University of Michigan for radiation.  

    Jen

    · Share on FacebookShare on Twitter
  • Kblbmommy1
    Kblbmommy1 Member Posts: 3
    edited March 2018

    Thanks for the great info everyone, now here comes all me questions! ( :

    I met with my oncologist and I will be on Herceptin and Perjeta indefinitely, so I'm thinking of getting a port (I don't have one since out of everything I have been through, that freaks me out a little). I will continue to get PET scans every 3 months along with blood work. I have a liver doctor at UCSF and don't need to see him unless something comes back. However, my blood work (including CA 15-3 and CEA markers) never indicated that I had cancer so those are not very reliable for me.

    1. Do you ladies all have ports?

    2. Did you change your diet, and if so, in what ways?

    3. Do you use supplements, essential oils, or CBD oil?

    Thanks in advance for taking the time to respond. Lisa

    · Share on FacebookShare on Twitter
  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited March 2018

    Here are some answers for you:

    I had a port for my chemo (taxotere, etc) in 2008.  In 2010, I wanted my port out.  I had been NED for 1 1/2 years and personally hated my port (it really stuck out).  So I got it out and for over 7 years got IVs in my hand for Herceptin every three weeks.   I am going to tell you at the end of that time, I was getting very limited on the veins they could get and some times it took 3-4 tries to get the IV in.  So, that being said, I would say a port is good for as long as you can stand it.  

    I got PET scans just every six months after I was NED.   Then I graduated to once a year and then just C/T scans until this one next week.   My tumor markers also never really indicated I had an issue so mine are unreliable.   I still get them drawn 3 times a year but I am not really sure why.   They are always normal.  

    For eating, I sure cleaned up my diet.   No fast foods and limited processed foods but nothing super radical.  I eat very little dairy and try to keep sugar in check.  I still drink wine and splurge when I need to. The biggest change has been exercise.  I exercise vigorously 4 times a week and have done so now for 7 years.    

    Supplements, I take a bunch.   Calcium, Vit D3 with K2, Borage Oil, CoQ10, Boswellia, Tumeric, Low dose aspirin, Melatonin, Theanine,  and a product called Transfer Factor Plus (by 4Life).    I also see a naturalist and have taken various herbs over the years. 

    Have not done CBD but I would if I didn't get drug tested at work.  It shows positive in a drug test. 

    HOpe this helps. 

    Best of luck 

    Jen


    · Share on FacebookShare on Twitter
  • Kblbmommy1
    Kblbmommy1 Member Posts: 3
    edited March 2018

    Thanks Jen, I didn't eat poorly before but have since eliminated sugar (as much as possible), dairy, and processed foods. I eat a lot of raw veggies now. I too have stepped up my exercise game. I'm eight months out from chemo and 3 weeks out from radiation so this part has been slow other than I make a point to walk 4-5 miles a day. Today was the first day I jogged part of my walk and it felt great! I have an appt with a naturopathic dr next week to discuss supplements and I have incorporated meditation into my mornings. Somehow I need to deal with the anxiety and I don't sleep well so let's hope exercise helps. Thanks for the info on the port. Have a great weekend. Lisa

    · Share on FacebookShare on Twitter

Categories