Are you currently (or have you been) in a Clinical Trial?
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Dear Nicole, Cureious is 100% right, nothing is over yet - zap buggers asap, treat everything else with gem/carbo, if fails with another combo (pembro/olaparib?), and comeback to TILs after 6 months with clean brain scan.
Now I went through my links, and there's one well known highest standard cancer clinic in Israel (https://www.shebaonline.org/til-immunotherapy-trea...) that uses TILs in clinical practice (and not only for melanoma). It is official that TILs go for ~$120k there, so maybe someone with good US insurances could explore this option. Nicole, I think you could at least contact them, what do you think? I am not advertising anything - yet another option:/
Saulius
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Hi Nicole, I have not been on this boards for couple months, I am sorry that you have brain mets, but may be it is really good to be discovere so soon before symptoms occured. Please google Kris Hallenga, she is young women in UK, she has MBC denovo for about 12 years and she had around 60 brain mets zapped with stereotaxy. She was originally HR positive, I dont know if her tumors lost the receptors like yours. But she is truly inspirational and I think you can be as well and in couple months you can do TILs
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Nicole, I was just wondering if the NIH team might be able to help you further in terms of what treatments you can have before entering their trial. They clearly want their patients to be in best-possible shape for treatment. For example, perhaps they have some suggestions about how to get immunotherapy along with your chemo as treatment while you are waiting for the 6-mos recovery period. The trial entry requirements says you generally should have had immunotherapy (meaning a checkpoint inhibitor) before taking their trial, so long as that is standard of care for your kind of cancer... Well, you are now considered triple-negative, although you have ER-positive MBC that lost ER expression, and molecularly is a very different kind of cancer- so for TNBC it IS standard of care to get Keytruda with chemo, and I don't believe there is any particular PDL1 expression requirement for that... Anyway, they could help guide you and I assume could call or send a letter to your doctor and/or insurance agents arguing that they would like you have had prior Keytruda before their trial- something like that could really make a big difference! And if nothing else, it seems these guys have good ideas and could advocate for you in whatever direction they think is best to keep you stable and with fewest side effects for the next six months, as you have a lot on your plate right now and really should not have to figure all these very important next steps out on your own..
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Oh Nicole, I am so sorry to hear about that.
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Nicole - That news is disappointing but let’s just hope the cyber knife works and you can get “clean”. Sending love, comfort and hope.
To the rest of you ladies: I’m not new to BCO but I’m new to this thread. After being on xeloda since late January, I once again have progression in several bones and one 2 cm liver lesion. I met with a research doc today and discussed going on BLU-222 which is a CDK2 inhibitor. I’ll be taking it as monotherapy. I know there are other CDK2 inhibitors in trials. Does anyone have any experience that they can share? I’ve taken Ibrance/Fulvestrant, Verzenio/Anastrozole and xeloda. Guardant shows CCNE1 amplification and FGFR.
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rk2020- Thanks for the reminder that CDK2 inhibitors are still in trials, focused on those who suspect they may be endocrine-sensitive but no longer responding to CDK4,6 inhibitors..
Here is another new trial, from Pfizer (maker of Ibrance), who are testing their CDK2 inhibitor along with a new CDK4-specific inhibitor and fulvestrant (also with a monotherapy arm): https://clinicaltrials.gov/ct2/show/NCT05262400?te...
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Posting for those that might be interested. METAvivor is having a webinar on Nov 9 to discuss a unique assay that doesn't use genetics or genomics, it directly measures the effects of different drugs on YOUR actual cancer cells to predict therapeutic response for up to 20 different therapeutic options, allowing you to better select your next treatment or therapy in the most individualized way available today.
Being discussed is METAvivor Early Access to Travera Rapid Therapy Guidance Testing - The fast track to selecting your next bridge therapy, through a cutting-edge new test.
* Recordings will available on www.Metavivor.org on November 10th.
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So, RK, that would help to know what compounds kill our cells in culture, but it sounds like similar to mouse models, it doesn't model the microenvironment and immune system effects? So mileage may vary?
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Saulius the link you gave for the place in Israel...they do not do TIL on breast cancer patients.I did tell them I was stage 4..I don't know why but they said they dont
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Dear Nicole, hmm... I am sorry for that. As far as I know, making TILs is possible for any C, when those TILs are found. Thing might be that melanoma has many more TILs than BC (which is known) and they are easier to harvest. That once again shows how state of the art the NIH trial is, and we all wish you to be there... Saulius
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Dear Nicole,
Not sure if the below trial have started recruiting, looks like lyell has best minds behind this trial. This is for TNBC and NSCLC
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RK - Thank you so much for posting about that METAvivor webinar. That technology is amazing!! I'm hoping they can do solid tumors very soon. I signed up to be on their waiting list. Thanks again!
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jsniffs...I missed the webinar and cannot find it can you tell me how to sign up?
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Nicole - The webinar already happened, but it was at:
The company that was talked about was Travera: https://www.travera.com/
If this kind of thing interests you, I'd encourage you to contact them through their website. They seemed very approachable, and I received a notice that they put me on their wait list the same day I reached out to them.
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jsniff,
You mention a wait list on Travera....a wait list for what?
I see info about their Rapid Therapy Guidance™ Test.....available through an Early Access Program in the United States, but nothing about a wait list.
Nicole,
I'm waiting to learn from Metavivor when the recordings from their lunch-and-learn series on MBC will be posted. They told me they thought the recordings would be posted today, but I don't see them yet.
Wendy
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Wen - Sorry, I wasn't clear. Travera's test is only available for pleural or ascites fluid right now. During the webinar, they said if you are interested in being notified when they start testing tissues/solid tumors, you can message them, and they will put you on a waiting/notification list. If you have fluids to test now, then they would be open to working with you now. My understanding is that anyone who attended the webinar through METAvivor can get the test free of charge. I'd recommend that anyone somewhat interested in this technology watch the METAvivor webinar recording (once available) to get more specifics.
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This is not about a Clinical Study, but is very interesting about a circulating dna test developed by the company Natera. I've just started reading their site, but it looks to me their services are available directly to the patient?
From one of their brochures: "SignateraTM for Breast Cancer Monitoring A personalized blood test to help you and your doctor understand if your chemotherapy or immunotherapy is working, or if your cancer is coming back"
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Here's the link to the recordings of Metavivor's lunch and learn series on MBC.
https://www.metavivor.org/blog/metavivor-lunch-and...
Look towards the bottom to see the three topics and click on "watch now". It takes you to Metavivor's YouTube channel. I haven't watched yet, so no comments. The three topics are: 1.) ctDNA Testing - Signatera 2.) ctDNA Testing - Altera 3.) Travera Testing.
Wendy
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There is an early stager over on the Reddit r/breastcancer board who has been thrown into a mad tizzy over the Signatera testing as post treatment it came back with a .05 of whatever (after she was told she was "cured") and now she's convinced she is just waiting for mets to occur and is going to die in the next five years despite being on AIs. They reran the test and now its .12 and she's updating her will. Yeah, its been a bit much to read the drama. Oncologists don't have protocols yet about what to do with a (very small) positive blood assay test so this may be a bit putting the cart before the horse. Or Signatera need to get a hell of a lot better on their communications and counseling practices or reconsider their current market opportunities.
Id like to find out a bit more about their data set, but I do worry these tests are just too new and would hate to get a false interpretation/signal to swap out a treatment when there is something else going on. Time to educate myself!
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I did the signatara test 2 times...when I was taking the Copper Depletion drug. Its really not a big deal..I will say my number increased drastically when I progrossed.
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So I got my scan results back and it showed progression everywhere including pericardial effusion and tumors, hemorrhage and new tumors in my brain, and a liver tumor that increased to 6.3 cm from 3.6 cm. I guess Epirubicin didn't work at all. Strangely, I feel fine except for an increase in SOB. The only thing that's worked in over a year has been ARX-788 which has been discontinued for commercial reasons. Gem/Carbo, Eribulin, Enhertu, and Epirubicin all failed. Prior to those treatments, the only drug I'd been on that failed was Pembro (Keytruda). Seems that my tumors have mutated to defend against all chemos.
Luckily, my MO had me all ready to join the trial for PY-159. I had thought the trial they were offering at UCSF was for PY-314 so was surprised to learn that it was PY-159 which I had never heard of. Same company, similar drugs, but I will have to take it with Pembro which I already know doesn't work for me and caused terrible mouth sores for a year and a half. I read through the consent forms and it says, if Pembro is causing bad SEs I can drop it and just take the monotherapy. I will do that as soon as I see any mouth sores.
My MO also said she has another clinical trial in mind if PY-159 doesn't work out.
Hugs, Susan
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Susan- I am so sorry to hear this news- it is really scary. I am glad however, that you feel good and Hope has a plan for you. I hope it is another miracle drug for you.
What is PY 159?
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Susan I am so sorry..and I do know the feeling..but wow that you are already on to another trial to try hope it works great.
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Susan,
I'll keep you in my thoughts and prayers....
Might dexamethasone mouth swish work for the mouth sores? I've been using it to prevent mouth sores that can occur d/t Everolimus and it's worked well for me. I use it 3x/day (~9-3-9 or 10-4-10) and I haven't had any mouth sores.
Do you know about IMUGENE and this study?
https://www.imugene.com/news/2022/9/21/first-patie...
Wendy
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I'm thinking about starting a new thread/discussion board related to the use of tumor markers, liquid biopsy, and solid tumor biopsy in patient care. Based on responses on BCO, seems the usefulness of tumor markers for tracking progression and response to treatment is variable i.e. patient specific, but if the test is never done (i.e. at baseline) how do doctors/patients find out if the tests are going to be useful? Liquid biopsies seem to be a newer diagnostic and monitoring tool with different commercial products available and variability in their use by clinicians. What is driving their use or non-use in patient care/clinical practice? Does this seem like a useful new discussion to start?
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I would find a thread like that interesting. My oncologists have all used traditional tumor marker tests even though mine were normal at baseline and never have gone more than a few points above normal.
I am interested in the Signatera test because I know Drs Heather Parsons and Nancy Lin were going to use it in the STOP HER2 study.
https://www.ourmbclife.org/episodes/rtac-lin-parsons
It will be interesting to see if it helps predict which MBC patients can do well after stopping Herceptin/Perjeta
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Dear Susan, uhh, so sorry to hear the results. I'd say your MO is someone out of this world... how is he/she so proactive and is always several steps ahead of time? I would like my wife to have such MO. It is also very good that you feel well. Best of luck with PY-159, please keep us posted.
Saulius
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Susan, I know you researched some trials for a friend you said was TNBC.... were they only located in SF???
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Thanks for the helpful and kind messages!
Wendy, I will try the Dex mouthwash prophylactically in hopes of keeping the mouth sores at bay. There was some discussion of the Vaxinia trial on this thread but Cure-ious thought it was too early in development to join the trial. I'm keeping it on my list since the primary site is in LA. Already on the lookout for my next trial after PY-159. I have not been able to stay on any treat for very long.
Nicole, Yeah. The list is just those trials available in CA. Did I send it to you already? If not, I can send it to you. The PY-159 trial I will be joining also includes TNBC.
nkb, PY-159 is "A humanized monoclonal antibody (mAb) that specifically binds triggering receptor expressed on myeloid cells 2 (TREM2) and is designed to deplete TREM2-expressing tumor associated macrophages (TAMs)."
bsandra, It's bit of a joint effort. I find possible trials and bring them to her to discuss. She also keeps her eyes open for good trials for me. She knows all of the breast cancer trials but not necessarily all the solid tumor ones. Many of the trials I bring to her she deems unlikely to work so ultimately, I accept her call on each one.
Another trial that looks exciting to me is for Milademetan. It targets TP53 and MDM2 and I have both of those mutations. The trial requiires WT TP53 and MDM2 with copy number >= 12. My reports didn't give me my copy numbers so I'm not sure I would qualify. I will have a liver biopsy for the trial on Friday and my MO put in the order to gather some extra tissue to do another genomic test.
I really enjoy all of this research but it can be exhausting! I don't know what I would do without the collective wisdom on this thread!
Hugs, Susan
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Dear Susan, one thing after "knowing" you for these years here on BCO I can tell for sure - you would be a wonderful MO. I'd be your patient even if you don't have any titles or certificates. In other words... you are so knowledgeable, and you are... amazing - please never forget that!
Saulius
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