Wanting to stop herceptin treatment!?

Options
NicoleIsASurvivor
NicoleIsASurvivor Member Posts: 21
edited August 2016 in HER2+ (Positive) Breast Cancer

First, thank u for reading my post...I am considering stopping the current drug I'm on because after this is go on a pill for 5 years to 10 years depending on insurance...I'm tired of being this way.. it's almost been a year and I'm struggling...idk what to do really...has to be one of the hardest decisions I've ever had to make. The reasons I want to stop treatment: I have all the side effects, which my oncologist ignores, muscle and joint pain..esp when I get up in the am or from taking a nap, nausea, no appetite only crave fruit, I'm latargic...very sleepy, I'm swollen and pretty sure I have lymphedema in my left arm shooting pains when I try to lift my arm..I bought a compression sleeve since my oncologist wants to just watch it...I swear I feel as though my body is giving out and I'm tired of theverything treatments it's almost been a year since I found out...surgery after surgery and treatments after treatments....idk what to do...I just want to feel better and have my life back..I'm not one to quit anything but ladies idk how much more I can take....any suggestions, advise, support, anything at all would be greatly appreciated. Thank you!

· Share on FacebookShare on Twitter

Comments

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2016

    I suggest that you find a new oncologist. I noticed that on the triple positive board that several of the gals suggested you find another onc. Do this right away before making any decision. I also suggest that you see a lymphedema specialist and not rely on your oncologist for medical advise for lymphadema. Check in with the triple positive group as you had earlier.

    Thinking of you.

    Liz

    · Share on FacebookShare on Twitter
  • Stephmoen
    Stephmoen Member Posts: 563
    edited May 2016

    see a naturalpathologist to help offset the sypmtoms of drugs

    · Share on FacebookShare on Twitter
  • Mommato3
    Mommato3 Member Posts: 633
    edited May 2016

    I'm so sorry you're having so many issues. You really need to find a new MO. Someone that will listen to you and help you decide what the next step should be. Lymphedema is not an oncologists specialty. You need to find a specialist that can get you the help you need. I hope someone can get you feeling better!

    · Share on FacebookShare on Twitter
  • VioletKali
    VioletKali Member Posts: 243
    edited May 2016

    I discontinued Herceptin at the 8 month mark due to side effects that were just as bad as chemotherapy with the hard stuff.

    I was comfortable with an overseas study that showed only a few % points difference between 6 months and one year. Everyone is different though, you have to make the decisions that are best for you.

    · Share on FacebookShare on Twitter
  • runaway
    runaway Member Posts: 16
    edited May 2016

    So did you stop it Babygurlwarren? I only ask because I also have some pretty terrible side effects which I assume are from the herceptin (muscle and joint pain, extreme weakness). I only have three treatments left and I'm really trying to get through them, but I do get pretty depressed at times. My biggest fear is that I'll continue to feel this way when I'm done.


    · Share on FacebookShare on Twitter
  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2016

    Runaway, have you been getting MUGA scans every 4 or 4 months while on herceptin

    · Share on FacebookShare on Twitter
  • NicoleIsASurvivor
    NicoleIsASurvivor Member Posts: 21
    edited June 2016

    I'm also having the same side effects and everyone seems to ignore them. I am also going to stop treatment after this next one on the 7th...that will make 8 months. I can not continue on with no one caring about my well being. I'm so sorry to hear u had a rough time, I know exactly how it feels. Thank u so very much!!!

    · Share on FacebookShare on Twitter
  • NicoleIsASurvivor
    NicoleIsASurvivor Member Posts: 21
    edited June 2016

    I have decided to stop after this next treatment. It will make it 8 months. I have switched oncologist, but in the same practice. I am trying to transfer to a different facility all together, but they do not take my insurance, so I feel stuck.

    · Share on FacebookShare on Twitter
  • NicoleIsASurvivor
    NicoleIsASurvivor Member Posts: 21
    edited June 2016

    I have been getting sonogram every 3 months while on herceptin. I just can't take the side effects and no one is listening to me or trying to help my side effects...so I feel it's best to stop. I'm sorry it took a while to get bk to u all. I have been going thru some deep depression. I'm going through this alone. All of my friends left me when I found out I had cancer. My boy friend and I broke up since my last post. I've never felt so alone...

    · Share on FacebookShare on Twitter
  • runaway
    runaway Member Posts: 16
    edited June 2016

    wow- so sorry to hear this- it sucks so badly to go through personal stuff, with or without cancer! I just stopped my herceptin one dose short of the full 17 courses. I think my doctor couldn't take my complaining anymore. It's only been a week, so too early to feel better. But I sure hope I will, and soon!


    · Share on FacebookShare on Twitter
  • NicoleIsASurvivor
    NicoleIsASurvivor Member Posts: 21
    edited August 2016

    I can totally relate. I stopped mine too at the 8th month mark. Now on to hormonal therapy that has extreme side effects as well. I just feel I will never feel good again. Ugh.

    · Share on FacebookShare on Twitter

Categories