Are you currently (or have you been) in a Clinical Trial?
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Re the pd-l1 expression and response, one reason I've heard as contributing to the outcome disparities is that the tests evaluating the marker expression are not yet consistent. Dr Hope Rugo's paper on it https://academic.oup.com/jnci/advance-article/doi/...
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Yep, and maybe how hidden the tumor is by other immune cells- it seems this field has gone on for so long now there ought to be some promising approaches being tested trials for ER-positive cancers, but how is that ever going to happen when we don't even have biomarkers that work...
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Update - I am very angry. AC682 trial has disallowed me. My most recent liver function test showed a spike in the AST/ALT and my trial MO told me that the sponsor might decide that I am now not eligible. I asked to speak to Dr Hamilton but everyone is busy. I have so many questions about the scan and what will happen next. I feel very disappointed.
The PA said they will try and consider me for the op-1250 study again. The CERAN drug that rejected me. She said the sponsor has made some modifications to the study that were approved and they will monitor my blood counts closely because of the IVIG. I told them to let me know soon because I need something to be happy about this Thanksgiving. I also asked for them to send me all the info about the CERAN drug. End of the day it's my body and I should know what I am putting in it.
All this is to say, I hope i still get a drug next week. The liver lesion is clearly growing and I need something 🙏🏻
thanks for letting me process here.
Dee
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Oh, Dee, how frustrating. So many hoops to jump through and then a last-minute curve ball. I hope you get an answer back quickly on the CERAN trial.
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Frustrating news Dee. I hope you hear something good soon!
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Hi everyone
I want to thank you all for the great discussion that takes place here. I don't always chime in but I lurk a lot and continue to learn.
For perky2020 and emac877, I definitely recommend considering trials sooner rather than latter because you have more opportunities. I suggest tracking webinars and sites like this for ideas because it's better to plan a bit. There's not always a lot of time at progression to set things up.
Five of my 11 lines of MBC treatments have now been in trials. Only 2 worked with any duration - 2 years with palbo/bazedoxifene also 18 months with inavolisib/GDC-077 with fulvestrant (it's a pik3ca inhibitor). Enobosarm, the Lilly CDK7, and the TTK inhibitor didn't work for me. But I've managed to get this far with only 2 chemos. Had to do the second because I did find myself in a visceral crisis in late 2019. But here I am. My oncologist can't believe that I've gone 11 months on abemaciclib, but it does appear from my last scan that I might be looking again soon. I'm really hoping to figure out a way to access Trodelvy in Canada for ER+.
SusaninSF - good luck on your new trial. I have to admit I watch what you and your oncologist come up with to figure out my wish list:)
Edited after seeing the moderator post below - AlabamaDee - Good luck! I look forward to your next update.
Take care all,
Heather
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Hi Heather - I do hope plan B works. I have been very angry about the removal from the other trial but OP-1250 has more patients and I will not be on the lowest dose of a very new drug. The coordinator sent me the early safety and efficacy data for the drug. What do you ladies think?
https://drive.google.com/file/d/1FklxhTXj4N3odFI2l...
Dee
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That is great news Dee!
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AlabamaDee, I am awed by your determination and intelligence in keeping up with trial info and seeking treatment. Form your comment on the liver mets thread, it sounds like you will join this CERAN trial?
I feel like I should be like AlabamaDee, but am having trouble finding the drive. I'm not attending (virtually) SABCS as I ought to, either. I'm like one of those air-filled holiday decorations on someone's front lawn, lying there all deflated with no air to hold me up. I'd love to switch from Faslodex to one of these newer meds, but I suppose I would not qualify for a trial at this point. I just updated my profile to show that I got 1 1/2 years on the SUMMIT trial. I was taken off it this month because of progression in the form of a new met to the transverse colon, for which I had surgery because the colon was almost blocked. The surgeon noted "multiple peritoneal nodules along the peritoneal surfaces, bowel mesentery and on the intestines". Up until now, all we knew was liver mets only, and the bile duct. And the bile duct is working fine now and last scan showed no active liver mets! All I am on right now is Faslodex. Awaiting genomic sequencing, seeing onc next week.
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AlabamaDee,
I hope you can get on the OP-1250 trial. I think it's a very promising drug. The company is right here in the Bay Area but there are no trial sites in California. So sorry to hear that you were rejected from the AC682 trial but it sounded a lot riskier than OP-1250. I totally understand your anxiety about waiting to get set up on a trial while you are progressing. It's stressful trying to get into a trial and then there are the "normal" stresses of changing treatment. Will it work? Will I suffer terrible SEs?
I've had some good news about my ARX-788 trial. My MO spoke to the company and they said that the washout period is 14 days, not 28 days. I had pointed out to the trial site doctor that the clinicaltrials.gov site said 14 days but they said that info was old. Somehow, the trial site doctor didn't have the latest information! The company also allowed me to get my screening at UCSF so that will save me a lot of traveling. I am so lucky to have such an amazing MO who goes to bat for me every time no matter how busy she is. I'm crossing my fingers that I don't get a last-minute curveball too. So far, my bloodwork has been good despite my liver progression.
Your tenacity is so inspirational. Your example has really helped me to keep going and not accept that my treatment options are over.
Love and light, Susan
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Hi all! Just a quick note to let you know somehow Alabamadee's account was compromised and the posts above that have now been deleted were NOT her posts. We are taking further actions to remedy the situation, but please disregard the posts previously made from her account, other than the ones still standing. Thank you for your patience and understanding!
--The Mods
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Thank you OP-1250 clinical coordinator for sharing this and enrolling me in the clinical trail
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Dee, congratulations - very good news!!!:)
Saulius
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Happy Thanksgiving to All! Hope you enjoy today with your families - looks like there was some kind of hiccup yesterday and the moderators had to bring down a few of my posts regarding the trail because it was against forum policy. I was only sharing information which was shared by the RC. These are our bodies and we should know what we are putting in them. Anyways, I hope Monday brings me good news!
Dee
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Hi again all! This is to let you know Alabamadee's account was once again compromised. We have now disabled that account, per her request, and she will post here once she has created a new account. Please let us know via PM if you have any questions!
--The Mods
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That's very sad that someone would hijack her account. What is wrong with people?
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AlabamaDee's account continues to be compromised. The poster above, AlabamaDeee, which started out as BamaD is NOT the real AlabamaDee. We are in contact with the real AlabamaDee and she has NOT re-registered. Please do not respond to anyone claiming to be AlabamaDee until we notify you.
Please be cautious about sharing your email addresses, or any personal information over PM.
We are working on this issue. Please contact us via PM, or to community@breastcancer.org if you have any concerns.
Warmly,
The Mods
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To the moderators,
Oh no. I have been PMing with AlabamaDee. I hope that doesn't put my account at risk. Let me know what I should do.
I'm so sad that, when she needs us the most, someone has hacked into her account.
- Susan
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Dang these bots!
It seems to me we had some comments from a new poster on here yesterday that have now disappeared? or perhaps I am hallucinating from the post-Thanksgiving feast...
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I wanted to let you all know that Theresa45 died this morning. I knew something was wrong because we texted each other a lot and she didn't respond to my last text. Her husband sent me an email with the terrible news. As you all know, Theresa was always so kind and considerate. She was having a lot of trouble breathing so I'm glad she is no longer suffering.
My heart is broken.
- Susan
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Oh, I'm so sorry to hear about Theresa- she was looking forward to trying the PACT trial just this last summer, this is very sad
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SusanSF- this is very sad, I am so sorry to hear this-
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We're so sorry to hear such unwelcome news. Our sincerest condolences to Theresa's family and friends.
The Mods
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Susan, I'm so sorry to hear about Theresa.
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Oh, Susan, I am so very sorry to hear about Theresa. Thank you for letting us know.
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so sad..and Zoe Oka....from FB also just passed too...
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That is very sad about Theresa. Thanks for letting us know
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Thank you ladies for all of your valuable insight into clinical trials. I was so excited to hear about the CERAN study, but just Monday heard back that my prior Xeloda use has made me ineligible. (They are still recruiting at the Sarasota Fl clinic in Fl with Dr. Patel)
So...my oncologist has flagged the clinical trial NT-04521764 for the measles vaccine. "A vaccine- MV-s-NAP for the treatment of patients with Invasive Metastatic Breast Caner"
Has anyone any experience with the vaccine approach? I have extensive bone mets...so they would be injecting into the boney lesions. Sounds like they only treat one lesion at a time...so I'm worried that the others will just be growing...however, supposedly my immune system will be trained to recognize the cancer as it does this injected measles virus and its flag. Any advise or thoughts would be helpful!!!
Krissy
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Krissy, This is a relatively new trial for a vaccine, injected into the tumor with a virus that will grow mainly in cancer cells (not normal cells) and express an inflammatory protein so that the immune system will be attracted to them. The success will depend on the extent to which that "training" of the immune cells enables them to go kill other cancer cells (ie the abscopal effect). It is a phase one trial, only 33 patients, and opened last year so no reported results. Have you asked the trial coordinators for data about what they are seeing in patients tested thus far?
also, you don't provide any information about your treatments- is the cancer bone-only? Which treatments have you had thus far? Is further endocrine therapy not an option?
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Cure and Krissy to bad that trial is ONLY in MN......
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