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

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  • cure-ious
    cure-ious Member Posts: 2,930

    Well, here is something exciting, just published in Nature Communications:

    This is preclinical (studies in mice)- researchers treated TNBC with radiation and immunotherapy (anti-CTLA4) and saw T cells enter the tumors, but nothing much else happened to shrink the tumors. They then added on Keytruda, which didn't help. they then added a CD40 agonist antibody- these antibodies stimulate dendritic cells, which are the first step in the killing of cancer cells- these are cells that eat the tumor cells and extrude cancer proteins on their surface to activate and target nearby T cells. the results were dramatic and most of the tumors went away.The three-pronged therapy resulted in complete or almost complete elimination of targeted tumors, as well as partial control of tumors that were not targeted by the radiation. However, the approach was not effective in eliminating micrometastases that had spread to the lungs. So not a cure but maybe a big step forward to make immunotherapy work in TNBC. A clinical trial is planned for MBC as the next step forward.

    https://news.weill.cornell.edu/news/2023/09/combination-radiation-with-immunotherapy-shows-promise-against-%E2%80%9Ccold%E2%80%9D-breast-cancer

  • cure-ious
    cure-ious Member Posts: 2,930

    And we have not discussed yet that there was big news in Sept when BioNTech's bispecific PDL1/VEGF antibody beat out Keytruda when combined with chemo as first line treatment for metastatic TNBC…

    https://www.fiercebiotech.com/biotech/biontechs-overall-survival-data-shows-promise-potential-keytruda-killer-breast-cancer

  • sondraf
    sondraf Member Posts: 1,701

    Quick question about adding on Celebrex - can I do that if I am on blood thinners? Im desperate for an anti-inflammatory of some, any kind to reduce the hip swelling at night and NSAIDs are a no go (look, Ill admit to using Voltaren gel and when I really could care less, Ill sneak two Advil, which do more for me than all the stupid opiates) due to bleed risk. Onc mentioned Celebrex possibly waaaaaayyy back in January but that got lost amongst the other issues this year.

    Ive also not been offered any sort of clinical trial but Im still bone only and my cancer center works pretty exclusively with AZ. I went through some of the back pages of this thread to October, but it doesnt look like there is anything good testing in the UK coming along for ER+ /HER2+ cancers?

  • cure-ious
    cure-ious Member Posts: 2,930
    edited December 14

    Sondra- Celebrex is an NSAID, so probably not good with blood thinners? - you might try MSM supplement as a safe anti-inflammatory?

  • bsandra
    bsandra Member Posts: 1,037

    Dear Cureious - regarding the Patina trial: yes, it is for HR+/HER2+, and the choice to block additionally ER was so obvious but it needed proof. Some patients that I know get tamoxifen in addition to HP but getting palbocyclib is something much better. Everyone was afraid triplet would cause huge SE, as for some palbocyclib alone is not a gift but this study did indeed prove that it is not the case. Human body is amazing and so unpredictable that it is really hard to know what would be that universal magic bullet. I am also very happy that treatments start to interchange - HR people benefit from HER2 treatments, and HER2 people - from HR! That is the way to go! Hugs,

    Saulius

  • cure-ious
    cure-ious Member Posts: 2,930

    2023: The median cost for a pivotal (i.e., phase III) clinical trial is $48 million, with an interquartile range of $20 million to $102 million. The same study calculated the average cost per patient to be $41,413 in pivotal clinical trials….

  • cure-ious
    cure-ious Member Posts: 2,930
    edited December 21

    MommaCJ- I wonder if you are still considering immunotherapy? A PDL1 score of 100% is super-rare! I forget if the cancer is ER-positive or - negative, and did they measure the tumor mutation burden. I was thinking of you when I read about a bispecific PDL1 antibody (binds to both PDL1 and Her2) that attached to cancer cells through both protein interactions as a result it binds more tightly, is targeted to the cancer more precisely, and is more effective. Stronger than Keytruda with fewer side effects! I was thinking maybe they could use that for Her2-low cancers also?

    PS Were there any other mutations that might give a clue as to why the PDL1 levels are so high?

  • rlschaller
    rlschaller Member Posts: 295

    @cure-ious thank you for the 2 articles on news highlighting research with TNBC. As a TNBC / MBC gal, I am particularly on the lookout for clinical trials in this area. I am working with a doctor at MSK, who is looking should my current treatment stop working. So far so good though, love learning and appreciate your knowledge, and everyone’s comments and contributions here. Happy holidays everyone.

  • eleanora
    eleanora Member Posts: 307

    Sondraf

    I have been on Celebrex (100mg 2x/day) for 2.5 years for arthritis pain. Almost 2 months ago, after reading Chicagoan's and cure-ious' discussions about it, I added 2000 mg of MSM with my MO's approval. I take it in capsule form as I never believe the ads that say to mix it in a liquid and you won't taste it. I think that I'm beginning to feel some subtle improvement in energy levels and decrease in skeletal pain. I have been on Kisqali/faslodex/xgeva for 2.5 years and hope to stay on it longer - fingers crossed for February scans - as I am able to lead what I think is an active, normal life for a 74 year old.

  • cure-ious
    cure-ious Member Posts: 2,930
    edited December 22

    Eleanora, Yaay for being an active 74 y/o!!! I hope to be able to say that one day, a few years down the road…

    I thank very much whoever (Chicagoan?) suggested MSM supplement- after years of ET plus CDK4,6i and moving to Elascestrant, taking MSM has done a miracle on my nails- they are growing like crazy, no peeling, deep ridges almost gone and indeed they are longer and much stronger than they were before cancer, its a bit hard to trim them…MSM supposedly also has some anti-cancer and anti-inflammatory activity..

  • cure-ious
    cure-ious Member Posts: 2,930

    rlschaller, will keep an eye out for TNBC stories, there's a lot going on right now in that area, obviously

  • chicagoan
    chicagoan Member Posts: 1,087

    Cure-ious-My nails are still a problem. How much MSM do you take and in what form? Thanks!

  • cblaurenceauthor
    cblaurenceauthor Member Posts: 78

    Wow! Great stuff for TNBC!

    I have my Bria-IMT treatment this week and scans on Friday 27th, so I'll have lots of news after the first of the year. Hopefully about moving to a new trial, or in what would be a total shock to me, news that this one is working. :) My liver numbers are all normal/dropping except bilirubin which went up from .3 to .8 and my ALP jumped another 20 points, so I don't know what the heck is going on in there. Tumor markers will be in Thursday and that might be a doozy.

    I have an iron in the fire about this one:

    Study Details | Study of the CHK1 Inhibitor BBI-355, an EcDNA-directed Therapy (ecDTx), in Subjects with Tumors with Oncogene Amplifications | ClinicalTrials.gov

    Apparently, I have quite a few oncogene amplifications: FGFR1 for sure and indeterminate MYC & EGFR. My problem is a history of pneumonitis, so I have a question in about it. It was 2.5 years ago, so maybe they have some wiggle room. Also, a lady in my Facebook group is on this trial, and said she had "slight reduction in lesions" on her first set of scans and it's the best result she's had since going metastatic. So I'm definitely interested in in. It started in 3/2023 so it's been around a little bit. And it's a pill and 15 minutes from my house, so thumbs up all around.

    The TTX-MC138 trial is screening for its third cohort. The article said, "Despite the fact that responses have not been observed yet, and some investors might be disappointed, H.C. Wainwright notes that the initial cohorts are likely below therapeutic dose levels. It is also highlighted that the study is still in the early stages of dose escalation with only three patients enrolled in each cohort."

    H.C. Wainwright raises TransCode Therapeutics target following SRC go-ahead for Cohort 3 By Investing.com

    So if it's not yet at therapeutic doses, and I don't know if anyone knows when that might be, then I'd rather wait and try something else.

    That's the update for now.

    A very Merry Christmas to all of you and let's all hope we get a big fat break this year from Santa, and the happiest and healthiest of New Years!

  • cure-ious
    cure-ious Member Posts: 2,930

    Chicagoan- I take the crystals, a teaspoonful (about 3.5g), 3-4 x week, and it took awhile because my nails were in really bad shape

  • chicagoan
    chicagoan Member Posts: 1,087

    Cure-ious-Thanks for your response. I take the same amount, 7 x week but my nails really struggle. They keep cracking off so I have to keep them very short. But, in the grand scheme of things, the appearance of my fingernails is the least of my worries! Happy Holidays everyone!

  • smallmoments
    smallmoments Member Posts: 57

    Hi Everyone. Would anyone have a recommendation for a second opinion ideally with an MO active in clinical trials.  I'm at Msk and trust my MO but things have taken a downturn with my liver in the last month and I want to be proactive.

    I did quite well on a clinical trial (rly2608) for almost 2 years, went on Truqap which failed after 5 months (liver #s blew up) my MO wanted me on Xeloda asap. It's only been 4 weeks but not feeling positive. Liver pain and tightness. Mentally, I'm trying to push through (always a challenge with discomfort). I've lulled myself into forgetting that things can change so quickly.  My MO's office has been very responsive despite busy holiday hours (I got an abdominal scan 2 days ago and waiting for results).

    Any recs would be so appreciated

  • eleanora
    eleanora Member Posts: 307

    @cure-ious

    Thanks for the cheer! I hope you get to have an active life for many years. After reading the messages between you and Chicagoan, I realized that I'm not taking a large enough dose of MSM and so have increased it to 3 capsules= 3 grams every day. My nails are exactly where yours were - deep ridges, cracking and splitting. While I agree with chicagoan that it's not a terrible problem in the overall scheme, I would be grateful for some improvement.

    Happy New Year to all.

    Eleanora

  • cure-ious
    cure-ious Member Posts: 2,930

    SmallMoments,

    Enhertu might do well to get things under control till you can get in another trial? Hope someone has a second opinion referral at MSK, Good Luck!!!

  • cure-ious
    cure-ious Member Posts: 2,930

    Eleanora and Chicagoan,

    While MSM has been a godsend for fixing my nails (and then some!) I have been taking it while on Elascestrant without any CDK4,6 inhibitors, which surely were part of the problem

  • chicagoan
    chicagoan Member Posts: 1,087

    Cure-ious-That's probably it. I am still on a CDK4-6 inhibitor, which I think is a big part of the problem. But, I'll take it over the alternative! I'm still hoping for a cure in our lifetime where we can go off the drugs eventually.

  • cure-ious
    cure-ious Member Posts: 2,930

    I'm with you, Chicagoan!!!! Where is the big fix for this? This no-fun "cancer game" has us jumping all over the place, twisting ourselves into pretzels trying to figure out what might be a best next step or a fix for side effects. I'm sure the MSM is responsible for fixing my nails, because they are way stronger than they ever were in life before cancer. So, at least appreciate that you can and will fully recover your nails, without peeling, breaking, deep ridges, once you are off CDK4,6i (and before later CDK2,4i therapy!)

  • cure-ious
    cure-ious Member Posts: 2,930

    SmallMoments, Wanted to add that my MO says they have seen some remarkable responses to Enhertu. Is the cancer still endocrine sensitive? If so there are a couple of trials with new CDK2 and CDK4 inhibitors that could be useful, and I am looking around for any extension of the observation that PI3KCA inhibition combined with PARP inhibition works on many MBCs regardless of whether they have PI3KCA or BRCA mutations. The issue was the way it was discovered was using drugs where the combination was too toxic. But I hope they follow up that combination idea. And there are other experimental things, but it sounds like you need to get more stable first?

  • weninwi
    weninwi Member Posts: 796
    edited 12:17AM

    Cure-ious,

    A possible big fix…..Just listened to an interesting discussion between Dr. John Campbell and Dr Angus Dalgleish on YouTube about a type of treatment developed from mycobacterium that boosts the innate (cell-mediated) immune system.

    https://www.youtube.com/watch?v=EIEC6L9ZK0c

    Dr Dalgleish is an immunologist and oncologist whose practice has focused on melanoma, but he says this immune boosting product is expected to be effective against several different solid tumors. He makes clear it is not a cure, but by boosting natural immunity it makes other treatment modalities like surgery, radiation, and chemo more effective. Unfortunately, he reports the company that was ready to start production has run out of money.