Are you currently (or have you been) in a Clinical Trial?
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Andish, I am ER+ PR- HER2- (or was as of Oct 2019). I just did my 1st round of Eruibilin
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Nicole- Both are right- there are now plenty of high-profile papers showing that specific strains of bacteria are absolutely essential to activate T cells and get immunotherapy to work. The earliest studies took strains of mice that did not respond to immunotherapy and co-caging them with mouse strains that respond well- mice eat each other's poop, and so the non-responders converted to responders, and then they used that approach to isolate and identify which exact bacteria in the poop were responsible for responding to immunotherapy. And now they show in the Science paper that the good bacteria are ones producing inosine, and that is how they stimulate T cells to attack tumors.
The story that came out about probiotic supplementation says something different- it says do not expect that you can convert your gut to an efficient field of good bacteria just by taking probiotics. You need a diverse microbiome and are far more likely to either do nothing but poop out the probiotics you eat, or chase away some of the good bacteria by filling your intestines with a bunch of what may be not even active bacteria. The study you cite shows that taking probiotics was associated with LESS-diverse microbiome and a worse respond to immunotherapy, further showing that good response requires a good gut function. The immune cells travel through your gut and have to get activated by bacteria that live there in order to go kill cancer cells. That study says don't mess with this by taking a bunch of bacteria of some strain or another, its much more complex than that.
I don't take probiotics but did recently try adding a pre-biotic, which is just fiber, but prebiotics are very solubilized short-chain fatty acids that supposedly plug "leaky guts" (ie, tighten junctions) and provide a kind of "fertilizer" for the natural gut bacteria. that is as much gut biology as I'm willing to play with. If you eat a very good diet with salads and walnuts and yogurt etc it supposedly only takes about three days to improve the quality of your gut bacteria naturally, no need for probiotics...
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Gotcha! thanks Cure!!!!
So about the Insoine....do you think we should take that or would it not even survive to the gut?
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That is a good and practical explanation, Cure-ious. The thing I always wonder about is how one’s gut microbiome fares when cancer drugs cause problems like chronic diarrhea, or when we are forced to take antibiotics for procedures. I hope eating a good diet when possible is enough. The three-day thing is encouraging.
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Thanks for this Cure-ious very interesting. I often eat plain Greek yogurt and I also love Kefir so I hope I am doing the right thing I have started taking Cyanocobalamin 50mg as at my last test my B12 was at the low end of normal - does anyone else use this? I am sure someone on FB said don’t use if you are ER+ Her- which I am.
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Two papers are just up in the latest Science, both of them report developing new oral STING agonists, these cause an increase of PDL1 expression and recruit immune cells into tumors to make cancer immunotherapy work. It feels like there is an explosion of progress in this area, so when do these developments make it into new clinical trials, and how can we monitor that?!
RATIONALE
First-generation STING agonists are cyclic dinucleotide (CDN) analogs of cGAMP. When administered systemically in animal models, they induce inflammatory cytokines equipotently in tumor and normal tissues, owing to ubiquitous STING expression. Thus, CDN-based STING agonists currently undergoing clinical trials are dosed by direct intratumor injection, which limits their application to a narrow set of tumors. To address a broad spectrum of cancers, STING agonists that are suitable for systemic administration and preferentially target tumors are needed. We identified a previously unknown compound (MSA-2) that exhibits such behavior through its distinctive mechanism of action. Moreover, MSA-2 is amenable to oral administration, a desirable delivery route because of convenience and low cost.
https://science.sciencemag.org/content/369/6506/ea...
https://science.sciencemag.org/content/369/6506/99...
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Here is a figure from their paper. Just look at the right panel, at the Overall Survival curve. Compare the COMBINATION result (top purple line) with Anti-PD1 (immunotherapy alone) or MSA-2 (STING agonist alone) line to see the improvement. Basically, this would be a good time to be a mouse, in terms of treating cancer. Progress!!
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Cure while I admit (and I know I am probably the only one) I got completely lost in your eloquent translation....I just want to say thank you for even posting!
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Nicole, Until the next breakthrough is here, I am obsessed with chasing down these various leads, and I use this forum as a written record to remember what I've read! When I want to look something up that I remember reading about, I just come here and search myself!
And because of course others are interested. Seeing even some of the basic science stream as it comes in every day shows there is a lot of reason for hope!!
For inosine, as with other things metformin and statins, I don't take them because I want to have some stuff in reserve that the cancer has not seen, you know.. Plus we don't know that it won't hurt, so, like they say a little knowledge can be a dangerous thing
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wow that sting study..... I want that flat 100% survival line for all of us!
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Mice mice mice... so many cures for mice. When will they start to cure elephants and us?:> Saulius
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Saulius...I agree.... and sad to say....but unfortunately many things that work for mice do not work for people
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Yes, Nicole, for many known and unknown reasons... but as I said long time ago, "parallel" lines to try drug should be established, i.e. when someone wants to try the drug, he should have the right if there are no other options. Clinical trials are too slow. And, in fact, >75% of "promising" drugs lack initial evidence to even start a clinical trial. I know several very promising and established drugs that work super in mice (cures MBC and other C) but cannot make it to trials in many years. I have been waiting for one particular drug (clinical trial, I mean) for 3 years already (https://www.houstonmethodist.org/1285_houstonmetho...) and nothing happens. This "in record time" was announced in 2017 and even today they are not ready for a clinical trial. I think the idea of better drug delivery is extremely promising... they say in their articles that only ~0,1% of chemo is delivered to tumors. If that figure could be increased to only 1%, cures could be achieved... Not simple to do but the idea is very simple and they have the technology. And then everything drowns in money, procedures, patents, future rights, shares, etc... why would a dying person be prohibited to try this drug on his own risk? I would do that...
Saulius
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saulius I agree 100% with you.
How depressing.....i just read on FB that this woman TNBC with low expressing PDL1 did Abraxane and Tecrntriq and had growth after only 2 months...... 😔 that was gonna be my next treatment and I believe my PDL1 is low its 10% .....that just crushed my hopes for that working. Edit** that gorl on facebook messagrd me that she only had 2% PDL1...so i guess I have better shot ..yay! I am still hoping to get NED on the Eruibilin and go back to endocrine therapy...HEY Ya Never know.....
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Dear Nicole, glad to see you recovering mentally. Please remember that there are many options, including many chemos and ADCs too, Sacitizumab Govitecan (Trodelvy, for tnbc) and Trastuzumab-Deruxtecan (Enhertu) that works wonders for Her2low, many others are coming. We live in good times - only 10 years ago all of this was a totally different story. Saulius
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Sarah Cannon Researcher told me their director said NO to ANY of their trials if I stay on IVIG. Many other individual trials I contacted said no also because of this. Still waiting to hear from MDACC about the cdk2/4/6 But I think the answer will be the same. (Side bar- outcomes for that trial do not seem worth the significant fasting requirements, weekly appointments and severe side effects)
So I am going to stop IVIG and get IgG labs every week to see how I do. 3 years ago I went below normal at 8 weeks. If I tank really low then I will have to go back on IVIG. I have had 2 bouts of cellulitis that can be deadly. That means standard of care Is next. Probably a platinum combo.
NIH said they would consider me for a trial that comes out in November that uses a virus and immunotherapy even on IVIG. so I have some hope.
It’s always something. (I may need anal surgery for a fissure/tear I got from the diarrhea) 🥴 hoping the compound cream works. Need to get an appointment with a urologist about the UTI vs bladder stones issue. Still dealing with headaches. 🤕 BUT I’m not letting it get me down. My once-wayward son is closing on a house tomorrow. We are going over to celebrate with him 🙌🏻
De
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dee- I hope you stay stable without IVIG
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Whats IVIG?
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Dee, hope you do well without the ivig and options open up to you. Oh ad what great news about your son. Makes a mother's heart so happy when they find their way.
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Dee, Your exhaustive research has maybe opened up the best option of all! Good luck and great job negotiating this very difficult scenario..
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So, a new drug combo has come out to treat brain mets- it involves the chemo drug vinorelbine and the new targeted drug BET inhibitor (I-BET-72)- the latter drug increases expression of beta-tubulin, and the vinorelbine is a tubulin inhibitor, so the combination works better than either alone and cured brain mets in 75% of the mice tested..
https://medicalxpress.com/news/2020-08-therapy-bre...
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NR- IVIG is what they have used and could continue to use with me to treat my severe anemia. I won’t speak for Dee but I assume it’s the same for her. it is used to treat autoimmune diseases which is why I assume cancer trials: drugs won’t pair with it.
I am no expert but that is my first responses
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Thank you very much LFF
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hi all- more excitement about the trial. 😊
So the MDACC trial coordinator contacted Pfizer and they said I can be on IVIG and apply for the CDK 2/4/6 trial. So I sent her email to Sarah Cannon to see if they would reconsider. I am waiting for their answer.
My MDACC MO highly suggests I try it since it has shown stable disease in many patients. She thinks it is best now since 4 lines and I have yet to achieve progression free status so I am back to considering it if I can get in at Sarah Cannon.
At MDACC only 1 person has stayed on for 1.5 years and another is at 11 months and still going. there has been one death at a different facility due to low wbc, cardiac arrest and organ failure 😳
My quality of life is actually pretty good right now, so I don’t really want to make weekly flights during covid to Houston for 11 weeks when I could drive to Nashville and then sleep in my own bed.
I also got a telephone appointment on Monday with a famous MSK nuclear medicine doctor who specializes in Neuroendocrine treatments. I am curious to see what she says.
Nicolerod- I acquired hypogammaglobulenemia from cytoxin 7 years ago. It tanked my IgG levels and because I have Lymphadema I am more susceptible to bad infections like cellulitis(hospitalization, 6 weeks IV antibiotics at home). The infusions keep my IgG levels in the normal range. IgG in your blood fights off 80% of infections. I have not had a bad infection in 5 years.
I thought Clinical trial research was overwhelming, but qualification is not easy either. 🤪
Dee
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Cross posting with Ibrance/ liver mets thread:
For anyone who might be interested in immunotherapy, I'm passing along info about the Cancer Research Institute's virtual patient program on immunotherapy on Oct 2-3. I attended a live version of this last year, and it was EXCELLENT. Also, they have a company with which they are affiliated that will match you with immunotherapy trials. This is also extraordinarily useful.
Their website is: cancer research.org and the info is there.
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Excellent, BevJen!! There is so much going on in immunotherapy its hard to keep up!
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Some of you will remember reading that asparagine, the chemical in asparagus that gives it that peculiar smell, can stimulate the growth of metastasis. So its not a good idea for us to eat lots of asparagus, unfortunately, as it promotes metastasis specifically, does not affect growth of the primary tumor: Asparagine works in concert with glutamine to drive the unique metabolic pathways the control metastatic cell growth.
https://www.cell.com/cell-metabolism/pdf/S1550-413...(18)30255-9.pdf
https://www.nature.com/articles/nature25465
There are drugs that inhibit Asparagine Synthesis enzyme that have been through clinical trials for other diseases, one is Eryaspase, and it is being tested now in phase2/3 in Europe for first-line TNBC in combination with gemcitabline/carboplatin in the TRYbeCA-2 trial. This is a short trial, started in summer 2019 and supposed to finish December of this year. If successful, hopefully they open other trials for Er-positive cancers.
https://clinicaltrials.gov/ct2/show/NCT03674242#co...https://www.curetoday.com/view/novel-agent-being-e...
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That sounds good Cure! I hope it does well and does open to ER+
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hi Nicolerad .
Can I ask you about coc protocol . You have been on cooc protocol ? What kind of drug you use ? Do you think it is helpful . I have metastatic triple negative breast cancer in my bones and right ovary . I asked my onc if I could reach NED. he answered me he doesnt think so . He gave me just 9 month to live. I want to discontinue my treatment .
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Andish Sorry your oncologist told you that. As far as clinical trials you can read through this thread but I am definitely not well versed in that area to assist you. I really cannot tell you what to do. As far as the COC goes I am actually not taking any meds from my Metro Map...I am only taking Metformin and I am not even taking enough of that to probably do anything. I am trying to get NED and then incorporate those. I definitely think you should either 1. Get a new Oncologist or a 2nd opinion 2. I would at the very least ask your Oncologist about a clinical trial that might be right for your type of breast cancer
I recommend you look at the Jane McLelland Thread on here regarding information about the COC protocol. Here is a link to that thread:
https://community.breastcancer.org/forum/8/topics/870956?page=1
You had asked me here earlier if I am triple negative or ER+ and I told you I am ER+ so I would not be the best person to give you advice. I see though you have been in the Triple Negative thread and spoke to Moth...so that may help you more than I could. I also recommend that you read Janes book How to Starve Cancer.
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