Fill Out Your Profile to share more about you. Learn more...

Anyone doing Opdivo?

sallyk
sallyk Member Posts: 21

After now failing Havalen going to try Opdivo. Not a lot of info on it being used for breast cancer. Any other BC sisters using this line of treatment?

Comments

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Hi Sally. I am not on it, but I am fascinated with immunotherapy and watching this space closely. I am hoping to hang on until these therapies mature because when they work it appears to be enduring.

    Will you be part of a clinical trial or is the doctor prescribing Opdivo off label? The good news is that has been used for a while in both Japan and the US for the treatment of other cancers. It is reasonably well tolerated and most of the side effects occur early in the treatment and then go away.

    Opdivo is an immunotherapy. It will block the PD-1 checkpoint on cancer cells. When cancer cells carry this receptor it tricks the immune system into thinking the cancer is not foreign. PD-1 is one of the ways our own body regulates the immune response and protects the normal cells from being attacked by our own immune system

    The risk is that the drug triggers an autoimmune response. While they know how to treat this side effect, it is a serious thing.

    The opportunity is that that you get an enduring response. Immunotherapy, when it works, tends to work for a long time.

    The active clinical trials seem to be given in conjunction with Ipilimumab and/or in combination with standard of care. Are you taking it as a monotherapy (by itself)? I'd be asking why.

    Often they test whether the cancer has pd-1 checkpoint inhibitors before they put people on this class of drugs. Have they tested you?

    Nivolumab looks very promising but Pembrolizumad (Keytruda) is a lot further along in clinical trials. If my oncologist was looking at an immunotherapy, I'd want to know why it wasn't one of the immunotherapies that is further along in the pipeline. Opdivo, as you have noted, is not well proven on breast cancer.

    Clinical Trials With Nivolumab (Opdivo®): A PD-1 Antibody +/- Ipilimumab (Yervoy®): A CTLA-4 Antibody

    • A phase II study of nivolumab after induction treatment for patients with triple-negative breast cancer (NCT02499367).
    • A phase I trial to test nivolumab and ipilimumab, plus entinostat, an HDAC inhibitor, for patients with locally advanced or metastatic HER2-negative breast cancer (NCT02453620).
    • A phase I study to test ipilimumab (Yervoy) combined with MGA217, an antibody that targets B7-H3, in patients with refractory cancer, including triple-negative breast cancer (NCT02381314).
    • A phase I study of nivolumab in combination with chemotherapy for patients with recurrent metastatic breast cancer (NCT02309177).

    - See more at: http://www.cancerresearch.org/cancer-immunotherapy...

  • artistatheart
    artistatheart Member Posts: 1,437
    edited July 2016

    Z, You astound me with your wealth of knowledge! do you have a backround related to research o just extra tenacious in digging up this information. Thanks so much for all you do for everyone!

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    I have a background in research and boy do I get tenacious when you tell me my life is on the line. But my background is not in cancer or even medical. Thinking about these questions, researching it, and writing it up helps me learn about this disease. But take what I write as just food for thought. If it raises some questions to ask your oncologist, that is great.

    Upon further reading, it turns out that in at least one study, PD-1 Checkpoint Inhibitors work as well on breast cancer that has the pd-1 checkpoint as it does on breast cancer that does not. This is different than other cancers like melanoma, where it only works on cells with pd-1 checkpoints. In fact, most breast cancer doesn't have pd-1 checkpoints, so that's why many were skeptical that immunotherapy would be important for breast cancer.

    But it turns out the presence of pd-1 checkpoints hasn't mattered in early studies of breast cancer. So they may not be testing for pd-1 checkpoint before prescribing Opdivo for breast cancer. In the absence of PD-1 checkpoints, one wonders what the PD-1 Checkpoint inhibitors are actually doing in breast cancer ... but I guess who cares if it works.

    >Z<


  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Immunotherapy can trigger a deadly autoimmune response. This is a link to the story of a women who nearly died in one of the phase I immunotherapy trials for breast cancer. I don't see this level of autoimmune response much in the studies. In general, the autoimmune reactions can be controlled with prednisone. But any treatment at this early stage has a lot of risks and its important to fully understand them.

    >Z<

  • sallyk
    sallyk Member Posts: 21
    edited July 2016

    Zarovka, I have not had any testing. The drug will be off label and will know tomorrow if the drug company approves it. The oncology center has 3 other patients using it off label for other cancers. Don't know if it will even work but sick of chemo.

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Sally Opdivo (nivolumab) is on the very cutting edge for breast cancer treatment. Anything you can share about why this particular immunotherapy was chosen for you (there are others), and how this works for you will be of interest. You won't find many people on it, but we're very interested.

    Hugs, blessings and good luck ...

    >Z<

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited July 2016

    Jill is doing Keytruda which is similar to Opdivo...

    Here's her blog:

    http://jillscancerjourney.blogspot.com


  • hollander
    hollander Member Posts: 93
    edited July 2016

    Hi Sally-- I met with my MO's PA today, and I was asking about immunotherapy drugs that might be part of my plan in the future. They have previously mentioned Keytruda, but today, she shared a story about Opdivo. The drug company has given their practice the drug to use on patients with a variety of different cancers, including breast. They are collecting anecdotal evidence, as opposed to clinical trial evidence with this "study". The patient she described is triple negative, and they have used most every drug in the arsenal on her. She has extensive metastatic disease all over her chest wall, to the point where it could be seen through her skin (not sure if those were skin mets, or just mets that were poking up through her skin from the chest wall). The patient has received 2 infusions of Opdivo. When the PA walked into the room to do a follow up exam, she said she burst into tears. The cancer was gone. Just gone, after 2 treatments. I'm sure there are more details to the story, but our time was limited, so I didn't have time to ask about scan results, etc. Oh, and the patient had no side effects at all. Just wanted to let you know that it is possible to get remarkable results from this drug. I hope and pray that you have the same amazing results!

  • sallyk
    sallyk Member Posts: 21
    edited July 2016

    hollander had my first treatment today. Very excited to see how it works. Praying this is the treament for me!


  • hollander
    hollander Member Posts: 93
    edited July 2016

    Fingers crossed that it's the one! Please update us as you get results-- you're a pioneer with this treatment!


  • zarovka
    zarovka Member Posts: 2,959
    edited July 2016

    Sally - yes! please update us. It's probably not as much fun to have a one way conversation ... but you certainly have an audience.

    >Z<