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

Susan,

Good for you for pursuing things with NIH. I also wrote to them -- to Dr. Stephanie Goff, who is the no 2 person on all of these trials -- and they sent me a series of questions. I sent my responses in to them, and then strangely, they asked me about my current treatment and whether it was a placeholder to keep things stable while we look around for another treatment or trial. I thought that was a weird question. Isn't every treatment that we are on a "placeholder" of sorts, where we hope that that things don't get worse? I must be missing something. So I wrote them a long explanation of how I came about to be on my current treatment. Let's see what else they come back with. They have not asked me for any imaging or records or anything, other than the responses to their questions

As for which trial, my gut would tell me to go with NIH since they've been at this for so long. I'm not familiar with the CAR-M trials and the only thing I know about it is what Cure-ious posted on here. It would be a massive pain for you since you are on the West Coast, but really, it sounds like you'd have to be here a few times at the start -- mostly for the 3-4 week hospital stay that they talked about in the information -- and then not that much later on. So I think you need to dig deep and think about what you want to do and how much travel you want to do for trials. Sorry for not being more helpful in that regard.

Bev

That explains it, Nicole. Did they ask you if you were definitely progressing, or are you just sending them your info to move the process along? I assume that they can look at your next scan and say yes or no based upon that, right?

B

BevJen, Thanks for sharing your thoughts.

Nicole, I think my current treatment is working. I have scans next week. I hope that I can stay on ARX-788 for a long time but I have been on treatments like Tamoxifen and Piqray that worked great at shrinking my tumors but only lasted a short time, 7 and 8 months. Getting on a new trial can take months so I want to get the next treatment lined up. If on review, I won't be accepted into the NIH/NCI trial, it's best to know that now, not after ARX-788 stops working. If I have any progression in my brain, I will be disqualified from joining. Nerve-wracking!

Nicole,

There have been several women in my MBC support group who also went from treatment to treatment with nothing working. I would hope that these days, now that they seem to be working harder to develop treatments for TNBC, you will be able to find something. Perhaps they are not looking enough at the specifics of ER+ BC that has become TNBC. I hope you can get on the NIH trial.

Hugs, Susan

NewGardener,

I hadn't run across that trial before but it looks very promising. Phase 2 trials are the best because you will definitely get the trial drug. It's also great that it is already approved for urothelial cancer.

Sorry to hear about your pleural effusion. I went through all of that, thoracentesis, pleurx, and pleurodesis. It was a long road for me though many do the drains for a few months and dry up. I hope you are one of those people.

Congratulations on getting 12 months out of Verzenio! I progressed after six months but I'll take whatever I can get these days.

Hugs, Susan

Recent CAR-T success in CLL is discussed in the latest Nature: https://www.nature.com/articles/d41586-022-00241-0

Congratulations, Susan!!! And thanks to you for helping get this drug to market quickly!

It's amazing how quickly the body heals once the cancer burden is lowered, hope you aren't having bad side effects and get a long long run!!!

That is fantastic, Susan! We're so happy for you!

Cheers, the Mods

Thanks to everyone for always being so supportive!

I posted to you in liver but YES!!!!!! SUPER DUPER HAPPY FOR YOU!!! If only my scan in 3 weeks would say that....

Interesting new model to grow and model MBC developed at Huntsman (Salt Lake City) described in the latest Nature Cancer- they have a small clinical trial (called FORSEE) that is ongoing

In this trial they take a biopsy and grow the patients tumor cells in their mouse metastatic model, then test FDA approved as well as experimental drugs and suggest best combination therapies and sequencing of therapy to suppress cancer growth and ideally prolong patient survival. This is for both TNBC and ER-positive cancers, however the latter patients do need to have progressed past endocrine therapies in order to be eligible.

https://clinicaltrials.gov/ct2/show/NCT04450706

https://healthcare.utah.edu/huntsmancancerinstitut...

It sounds like the same thing. When I first became metastatic eight years ago, the woman who did my intake to the MetsintheCity support group was doing something similar. She hadn't found a treatment that worked so she was doing something where they took some of her tumor and put them in mice, then tested various therapies on the mice. Sadly, she died soon after. Not sure if she was able to get the mouse info in time to try a treatment indicated from the results. Must have been the Nagourney Institute since it was in California. Checked out the site and they don't mention mice anywhere so maybe they moved on to a synthetic environment.

Wow, Susan, that's fantastic. Pretty dramatic -- something must be going right!

that’s great Susan. I might get in touch. We will see what Wednesday brings.

I sm having brain surgery Wednesday to remove a cyst they have been watching for a year. It continues to grow and they can’t really treat it with radiation as it’s in sm area that has been treated twice. It could becradiation damage but my RO doesn’t think so. Guess I’ll find out.

I haven’t met with oncologist yet. Haven’t heard from them in fact. My RO was the one who looked at my zpET scan from Wednesday to see if there was any other cancer causing any problems. I was stable from head down.

So I’m off for surgery on Wednesday. I’m told it’s a simple surgery and I might be home on Thursday.

Here is hoping to get good results. It’s been 7 years since my last brain surgery and that showed necrosis not new cancer. I eoiuld love to hear that again.

Take care everyone. I might scan things in the days to come but likely won’t respond.

Wiyou all the best , LFF. Hope you will be in your own comfy bed quickly!