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

@cure-ious I swear I thought I answered your last post about KEYLYNK-007 forever ago! Sorry for the delay. I looked at the trial and it's not recruiting BUT it is being held at my cancer center in Dallas so yay! I have the info printed in case I can get into a Phase 3 or something.

Although this cancer center is on my last nerve. I had CT scans on Saturday and I'm still waiting for results. I would be more patient but my last tumor markers jumped 5000 points to 8600 and I'd really really like to know why. I've never heard of markers that high. I feel perfectly fine, so I don't know what's happening.

Will keep updated.

UPDATE: received scan results today. There has been progression since April 24th, but it doesn't look like anything new. Nodes stayed mostly stable, and most of the liver lesions grew a bit. I don't know if he'll keep me on Orserdu as I was only on it for ~30 days before the scans. I'm relieved that it's not widespread and consider the news goodish.

I have 10 days before I see the onc, but I'm much calmer now that I know it's not raging like wildfire. Not sure if we'll go with immunotherapy or a BRCAm drug or continue with Orserdu. We'll see. The Datroway (TxD?) is on the table too I think.

CBL

Hello all,

Saw the onc today. He gave me a choice of Talzenna, Datroway, continuing Orserdu with a CDK. I have a BRCAm.

I decided against Orserdu with a CDK since I've already been on Kisqali and though I did well, it eventually stopped working, and we know the Orserdu isn't working (yet).

I decided against Talzenna because of the presentation about Datroway working on BRCA mutations for like 21.9 months vs. 6 for chemo. The side effects are scary though.

He has never prescribed Dato, and the pharmacy didn't even have it set up (this is at UTSouthwestern) so I probably won't start for a week or two (stay on Orserdu in the meantime.) I can't wear my contacts the entire time I'm on the drug, the mouth sores are supposedly bad, but I'm willing to give it a shot.

I hope I made the right decision. He seemed to think all would have an equal shot, and I don't really like having that kind of responsibility, haha, but I'm trying to remain positive.

@cure-ious and all the hive mind… did I make the right choice?

CBL

@cblaurenceauthor I want to let you know I have a friend who has BRCA and is on Talzenna and is doing well with few side effects. I just wanted to let you know. Not trying to persuade you one way or another.

Update on my Bria Trial. I progressed, significantly in the first two rounds. It is frustrating because my body was very responsive to the vaccine; I got huge welts. I was running a fever almost the entire time. However, my pain trajectory made it fairly obvious I was likely progressing. It seems to me that my cancer probably doesn’t have the particular protein being targeted with this vaccine.

I switched to Abraxane.

For all- Here is a new ASCO Post interview about PCSK9 inhibitors- as discussed above, PCSK9 inhibitors have big effects on cholesterol (lower LDL and triglycerides, raise HDL) but also, at least in mice, big effects on cancer metastasis: 1) can shrink existing breast cancer mets, at least to some extent; 2) huge effect on preventing mets for those with high-risk early stage breast cancer; and 3) strongly boost the effects of immunotherapy, improving the chance of responding.

The drug is an at-home injectable monoclonal antibody that inhibits PCSK9. Turns out 70% of white women, and high numbers in Europe, east Asia, and west Africa, have a variant PCSK9 that is super-active and gives one a 10-fold higher chance of developing mets. So many people here might be helped by taking this drug. Its pricey (tho not at the level of most of our drugs) so insurance only will pay for those who cannot take the cheaper statins. But statins very commonly come with significant muscle and joint pain and soreness, which feels like badly bruised muscle (which I know because I have that!) so the PCSK9 is a much better option for those with that problem.

Plus, if anyone has an elevated TMB (tumor mutation burden) taking the PCSK9 inhibitor can strongly increase immunotherapy responses. Sara Tolaney recently reported anyone with TMB of 14 or higher are already likely to respond to Keytruda, and PCSK9 inhibitors should also help with that. And then considering the recent report that SSRI antidepressants activate T cells to pick up the fight, maybe add some Prozac into the mix…

Here is a link to the review: https://ascopost.com/news/june-2025/how-a-commonly-inherited-genetic-alteration-is-driving-breast-cancer-metastasis-and-predicting-survival/

Mika, Absolutely agree!!! We need more & better off the shelf options that can actually shrink the tumors way back, lot of targeted therapy can't do that…

@perky2020 Hi Perky. I'm actually on the Datroway treatment—I've only had one and will have my second dose on Friday. I'm on pins and needles waiting for my liver numbers because my AST shot up like 120 points to 211 when we took them three weeks ago (the other ones were elevated but stable). The side effects I've had are fatigue (really bad first week post-infusion, but gets better) mouth sores (I haven't been doing the mouthwash faithfully so I got a few but they're not too bad) and I have to put eyedrops in 4x a day. So overall, not too bad…if it's working.

When he gave me the Orserdu/CDK option, he said he could get it approved. I'm not sure how since we didn't go in that direction, but he's in a teaching/research hospital, so maybe he gets different parameters? Not sure.

Can't hurt to put it through and argue the case. Maybe she'll reconsider and at least try.

Good luck!

CBL

My liver numbers jumped a bunch since the first treatment of Datroway. The doctor isn't concerned—he thinks the spike is because the drug is metabolized through the liver. I'm not sure I buy it since I've been trending up for months, but my bilirubin is still normal, so we're sticking with Dato for now. I have three weeks to wait for new labs and about five for scans.

Otherwise, my second infusion was Friday and I've had a great weekend—lots of energy, good appetite, etc.—but apparently the payload drops on days 4-7 so that's when I start feeling the fatigue, etc. Last infusion the first week was not fun, but each day after was a little better.

Since I'm the first patient of his to have the drug, I guess we're all learning about it at the same time since it was only approved in February. I don't know what the plan is if it's not working, but I hope it's a good one.

CBL

I came on to post another update for BRIA-IMT, good overall survival data continues with this regimen, esp for ER-positive patients in later stages:

https://www.onclive.com/view/bria-imt-plus-checkpoint-inhibition-leads-to-52-1-year-os-rate-in-heavily-pretreated-metastatic-breast-cancer

A friend just sent me this promising update on Pelareorep, an oncolytic (cancer-killing) virus, which is wrapping up a smaller phase two trial (48 patients) where it was given in conjunction with chemo and/or Avelumab ( immunotherapy). The trial was for MBC patients who had completed at least one anti-estrogen/CDK4.6i therapy, and prior treatment with mTOR inibitors was allowed, but those who previously had chemotherapy or immunotherapy were excluded. The update shows a significant benefit of adding Pelareorep to paclitaxel (12 mos PFS vs 6.4mos with paclitaxel alone; and OS was 21 months v 10.8 months). The update does not specify whether the results were boosted further in the group that also got immunotherapy. Based on these findings, the company will be moving forward with larger phase IIb/III clinical trials.

https://www.targetedonc.com/view/pelareorep-shows-transformative-survival-data-in-advanced-cancers-pivoting-to-registration-studies

CBL, How is it going?!

"The team used a mouse model of aggressive Alzheimer's disease with multiple disease-related mutations. As the mice aged, symptoms resembling Alzheimer's emerged, and they were treated with one or both drugs (Femara and Irinotecan).

The combination of the two cancer drugs reversed multiple aspects of Alzheimer's in the animal model. It undid the gene expression signatures in neurons and glia that had emerged as the disease progressed. It reduced both the formation of toxic clumps of proteins and brain degeneration. And, importantly, it restored memory.

"It's so exciting to see the validation of the computational data in a widely used Alzheimer's mouse model," Huang said. He expects the research to advance soon to a clinical trial so the team can directly test the combination therapy in Alzheimer's patients."

So, if anybody here ever happened to get Femara with Irinotecan (?), they may have gotten the extra added benefit of blocking Alzheimers. I checked (because I did not know), and indeed Femara crosses the blood-brain barrier…

For crap's sake, CBL- What a roller coaster ride!!! So this is pseudo-progression? Sometimes, its a good surprise- do you now feel better? How quickly does it subside?

omg CBL! Hugs ! 🤗 love “I’ll just ride the wave and see where it takes me” ..words to live by ❤️