Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Are you currently (or have you been) in a Clinical Trial?

1…2223252728…145

Comments

  • [Deleted User]
    [Deleted User] Member Posts: 760

    hi!

    I recognize some of you from other threads. My question is this. Do you all go looking for your own trial or do you get help from your MO?

    I have been scouring for trials myself. My MD Anderson MO only looks at in house breast center trials of which I do not qualify for anything but a poorly performing immunotherapy trial. They put me in their phase 1 data base but most of those say that I have to have tried all available therapies first I am running out fast- on my 4th line in 10 months.

    I found a PRRT trial that deals with the Neuroendocrine features and convinced my home MO and MD Anderson MO to support me by starting on octreotide in addition to envirolimus and faslodex. The trial nurse said they will consider breast cancer and the fact that I am on IVIG, but they only take 50 patients and I have to pay for the drug ( very expensive) but my alternative is going to Europe.

    https://clinicaltrials.gov/ct2/show/NCT04276597?cond=putnet&draw=2&rank=1

    I may have to self pay for a special dotatate PET scan ($$$$) which is required for the trial. Insurance rejected prior authorization. At least today the imaging manager said yes to scheduling the scan while they try to fight insurance.

    I am fighting for my life and feel like I’m doing it alone.
    Any one else feel like they are having to search on their own?

    Dee

  • cure-ious
    cure-ious Member Posts: 2,923

    Dee- Some of us would be happy to search clinical trials for you, can you just make a summary of how long you were on each different treatment you have had in the metastatic setting, and what you know about the features of your cancer subtype?


  • marley2
    marley2 Member Posts: 38

    Shetland- my onc is some kind of miracle worker with insurance companies. Did not have any problem getting it covered. I have to travel to Jacksonville, so it is easier to do at my local onc. Hope starting slower will be easier on you!

  • [Deleted User]
    [Deleted User] Member Posts: 760

    thanks cure-ious

    I think I am putting my proverbial eggs in the PRRT basket right now. I will let you know if I make it in.

    It just frustrates me to see some trials I missed out because of too many treatment lines. Like this one for ESR1 mutations that make me AI resistant.
    https://clinicaltrials.gov/ct2/show/NCT03781063


    others want you to exhaust all other treatments (phase 1 especially) and I am not there yet. Still have vinca alkaloids, platinum drugs, and possibly returning to a taxane. But I would prefer targeted therapy To the harsh chemos, thus the PRRT

    Found out too late that the y-90 I just completed has trials with the PRRT to give it locally to the liver.

    Tried NIH and they turned me down for immunotherapy.

    Was told by one center that my Neuroendocrine features eliminates me from any of there BC studies plus the low IGG also is a problem because I have monthly infusions for that.

    Stupid cancer. But I persevere hoping for something to get these tumors under control. I have the time and resources to travel to the trials. Praying the plan I am on works and hoping for the trial to be anoption

    Dee


  • [Deleted User]
    [Deleted User] Member Posts: 760

    thanks cure-ious

    I think I am putting my proverbial eggs in the PRRT basket right now. I will let you know if I make it in.

    It just frustrates me to see some trials I missed out because of too many treatment lines. Like this one for ESR1 mutations that make me AI resistant.
    https://clinicaltrials.gov/ct2/show/NCT03781063


    others want you to exhaust all other treatments (phase 1 especially) and I am not there yet. Still have vinca alkaloids, platinum drugs, and possibly returning to a taxane. But I would prefer targeted therapy To the harsh chemos, thus the PRRT

    Found out too late that the y-90 I just completed has trials with the PRRT to give it locally to the liver.

    Tried NIH and they turned me down for immunotherapy.

    Was told by one center that my Neuroendocrine features eliminates me from any of there BC studies plus the low IGG also is a problem because I have monthly infusions for that.

    Stupid cancer. But I persevere hoping for something to get these tumors under control. I have the time and resources to travel to the trials. Praying the plan I am on works and hoping for the trial to be an option

    Dee


  • cure-ious
    cure-ious Member Posts: 2,923

    Here is an inspiring story of a woman who responded to the PANVAC vaccine and her MBC has not returned in 12 years- is she cured? They say she is the only one out of 50 people who responded, and they are scouring her cancer, her immune system, and everything else to try to figure out why she has done so well...

    https://www.nbcwashington.com/news/local/virginia-...


  • bsandra
    bsandra Member Posts: 1,037

    Thank you Cureious. Yup, there are quite a few of these stories with different drugs. Who knows, maybe find out what happened to these people is much more important than any clinical trials... Saulius

  • BevJen
    BevJen Member Posts: 2,341

    Cure-ious,

    I live in the dc area and saw this on the news. It's an amazing story. The one thing that I didn't realize is that she's still getting the vaccine today. That's very interesting.


  • BevJen
    BevJen Member Posts: 2,341

    Also, for those folks who do not know anything about the stages of clinical trials, I found this information on the NCI website. We had discussed this recently at my metastatic breast cancer group. I think it's useful for when folks are trying to decide about whether to participate in a trial or not. Hope it helps someone, like me, who is just learning how to navigate the trials world:

    https://www.cancer.gov/about-cancer/treatment/clin...


  • nicolerod
    nicolerod Member Posts: 2,877

    Curious..I will take you up on the "Ill search for you trial thing"......if you want???


  • nicolerod
    nicolerod Member Posts: 2,877

    So let me get this straight..this person in the trial has been cancer free for 12 years and this trial is still going on??? No one else in 12 years got cured except her?? And why isnt this offered in other places??

  • cure-ious
    cure-ious Member Posts: 2,923

    I don't think the trial she was on is currently running, there are updated versions of the vaccine and I see some in trials for different cancers- what you wonder is why is it taking so long for them to analyze her- precisely to Saurius' point, they should be all over these survivors to figure out what features their cancers or immune systems have (that the other non-responders in the trials lacked) to learn who to recruit to these trials...For me, the big takehome is she's done well for twelve years and they are just now deciding to study her?!!!

  • BevJen
    BevJen Member Posts: 2,341

    The other interesting thing is that it says she's still getting the vaccination. What???? So what is it doing to her system? And why the heck, as you say, Cure-ious, haven't they figured this out???

    I looked up her doc, and she doesn't look that old. So maybe she inherited this patient from another researcher?

    Also at NIH, Dr. Stephen Rosenberg has been doing years of research on CAR T and breast cancer-- why has that not been exported more widely yet?


  • cure-ious
    cure-ious Member Posts: 2,923

    Actually there is a new CAR-T trial directed to all types of MBC that is being carried out at the Fred Hutchison Cancer Research Center in Seattle. Originally it was planned only for TNBC but interestingly, they explanded it to all subtypes, which makes sense. Hutch is right up at the top of cutting-edge CAR-T, so hopefully they get some good results as they certainly know what they are doing. The engineered T cells are directed to attack cancer cells that express a cancer-specific form of cleaved MUC-1, which is on the surface of most breast and ovarian cancers, but is not on normal cells. The trial just started last month (Jan 2020). Here is the trial: https://clinicaltrials.gov/ct2/show/NCT04020575

    Eligibility requirements include that the cancers express at least 30% MUC1 (most will have much more than that) and:

    1. Patients with hormone receptor positive disease must have received at least 3 prior endocrine therapies and at least 2 prior lines of chemotherapy in the metastatic setting.
    2. Patients with HER2 positive breast cancer must have received at least 3 prior HER2-directed therapies (trastuzumab, pertuzumab, TDM-1 or others) in the metastatic setting.
    3. Patients with triple negative disease must have received at least 2 prior lines of chemotherapy in the metastatic setting

    This is a phase 1 trial and is planned for 69 patients and the primary part of the trial will be completed by January 2023, though patients will be followed for longer. After they figure out the right dose to give, they will test 15 patients for each MBC subtype.

    .


  • BevJen
    BevJen Member Posts: 2,341

    Cure-ious,

    Thanks for that information.

  • luce
    luce Member Posts: 361

    Dee: Do you know this app? It searches for clinical trials, amongst other things. Pretty hit-and-miss but no worse than any other way of looking for them, and easier.

    https://www.outcomes4me.com/

    Amanda Stroney, one of their employees, can be quizzed in a FB group called “MBC Trials and Innovative Treatments.”

  • JFL
    JFL Member Posts: 1,373

    Amazing about the woman in the vaccine trial. Gives me hope but so frustrating it worked only on her out of 50 patients. I would suspect they have been trying to determine why she responded for all 12 years. It is just a mystery, as it is in the case of Judy Perkins in the tumor infiltrating lymphocytes trial. No one knows why it worked for her. I did find it interesting the article said that the median survival was 5 years for someone in her position (with liver mets, no less). Never have I heard any MBC having a median survival of 5 years.

  • luce
    luce Member Posts: 361

    Dee: here’s another organization that might be worth contacting for help finding trials and treatments. I have no personal experience with them.

    https://www.cancercommons.org/


  • Weareonthecusp
    Weareonthecusp Member Posts: 22

    Good day everyone, just an update on the second injection of 5 in my trial. Trial is 5 injection into target tumour and keytruda. The second one was still very painful but the Dr put me in a different position and the day after feels so much better than last time. The injection is ultrasound guided and they take a measurement with each. First injection measured 5.2/4.8/3.8. This injection measured 5.2/3.8/3.2. I will take any shrinkage as good news. This was a 2 week span. Any questions just ask, otherwise I will post measurements in 2 weeks.

    Kathy

  • Kattysmith
    Kattysmith Member Posts: 688

    Excellent news!! Thanks for posting the update and have a great weekend!

    Katty

  • luce
    luce Member Posts: 361

    a 2011 WaPo article mentions that Samantha Seinfeld had failed on a previous vaccine trial, and that they think that had something to do with her completed response. No mention of what kind of breast cancer she had but she was under 30 at diagnosis.

  • cure-ious
    cure-ious Member Posts: 2,923

    indeed, going from one vaccine trial to another one might explain why she responded so well...

    https://www.washingtonpost.com/national/nih-human-...


  • bsandra
    bsandra Member Posts: 1,037

    Our onco-immunologist told us that he knows some people with very hard to treat stage IV cancers (he did not specify them but mentioned something like stomach) who run 6-8 years on conventional treatments + DC vaccination, and they do really well. Why these people are not being studied is a million dollar question to me? Saulius

  • BevJen
    BevJen Member Posts: 2,341

    Saulius,

    What is a DC vaccination?

  • bsandra
    bsandra Member Posts: 1,037

    Dear BevJen, Dendritic Cell "vaccination"...

  • BevJen
    BevJen Member Posts: 2,341

    Saulius,

    Oh, that's what I was worried about, since we don't have this yet in the US. Darn it.

    Does anyone know about any availability of this in the US at this time?

  • BevJen
    BevJen Member Posts: 2,341

    Okay, I answered my own questions. There are some ongoing trials.

    For those interested, there are some great articles out there. Here's one, but it's not specific to breast cancer:

    https://www.futuremedicine.com/doi/full/10.2217/im...

  • [Deleted User]
    [Deleted User] Member Posts: 760

    thanks for all the links on clinical trial searches. MBC connect was pretty easy to use and I found a few that might apply. I will wait to see if the PRRT trial is a go before I pursue much else.

    Dee

  • [Deleted User]
    [Deleted User] Member Posts: 760

    just found this trial at MDA for esr1 mutation

    NCT04256941

    I sent a message to my MO to see if I can put this in my bucket if I don’t get into PRRT

    Dee


  • Grannax2
    Grannax2 Member Posts: 2,387

    Dee. I hardly ever post here but I'm glad I saw your post. I'm ESR1, too. Tell me more about that trial. Is it at UTSW in Dallas? I'd like to check into it for me in the future.💞

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.