IBC Clinical Trials -- Yes or No??

Options
LW422
LW422 Member Posts: 1,312
edited February 2021 in IBC (Inflammatory Breast Cancer)

My chemo is scheduled to start next Tuesday for IBC at MD Anderson. It is standard protocol, with Taxol first for 12 weeks followed by 12 weeks (once every 3 weeks) AC. I met with my MO this morning and was asked about whether I'd participate in a clinical trial. I was caught off guard because the past month has been a whirlwind and I feel bombarded from every direction with so much information.

Naturally they expect a rapid response from me, but I'm torn. On one hand, I'd love to help provide information that might save another woman's life someday. On the other hand, I dread having more tests/biopsies added to my treatment along with medicines with unknown side effects.

Have you participated in a clinical trial and would you do it again? Any input is appreciated; I need to let them know ASAP.

· Share on FacebookShare on Twitter

Comments

  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    Well, I'll add that I will not be participating in this clinical trial. My insurance company declined the treatment on the basis that it is "experimental."

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2021

    LW - Answered on your other thread. As much angst as you have had, I would not participate. Glad you have opted out.

    · Share on FacebookShare on Twitter
  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    Me too, -2!

    · Share on FacebookShare on Twitter
  • blue22
    blue22 Member Posts: 280
    edited February 2021

    Sorry no one from the IBC group posted... I did participate in a clinical trial. They were able to figure out what to do with my insurance. I know there was something they had to take care of but honestly that is two years ago and I don't remember.

    I think there is a ton of misinformation about insurance and clinical trials. One of my nurses seemed to think that people in clinical trials had all their treatment covered by the trial. Umm no. That is not the case.

    I was lucky to have a patient coordinator that I could work with who helped with insurance questions, rejections etc. and get those things taken care of.

    For me, seeing the stats of IBC influenced my decision to participate and take advantage of treatment not currently available.

    · Share on FacebookShare on Twitter
  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited February 2021

    I participated in a clinical trial. It was studying denosumab (Prolia or Xgeva, they're both the same drug). It was theorized that the drug would help prevent breast cancer recurrence. I'm pretty sure my insurance didn't pay for the medication they injected, and I'm pretty sure I was in the active arm, not the placebo.

    It was determined I should withdraw from the study because my treatment became non-standard when they added Xeloda and Navelbine after mastectomy.

    Like blue22 said, participating in a clinical trial can allow you access to treatment not yet available. But yes, there's always some sort of risk.

    · Share on FacebookShare on Twitter
  • LW422
    LW422 Member Posts: 1,312
    edited February 2021

    Thanks Blue and SB. I had already decided to forego the clinical trial because I just feel too beaten down by my diagnosis and am not wanting any more tests, biopsies, side effects, etc. So when my insurance declined coverage it was a relief, truth be told. I know that the trials are necessary but I'm not in that place mentally right now.

    · Share on FacebookShare on Twitter

Categories