Hi to all,
Hope you feeling good today.
I've read the different posts on ErSO and also, I believe most of what's on the net about it.
Still, I feel their is very little media cover considering it's potential.
I really think the project would move faster if it had more and better media support, if some celebrities would talk about it to put pressure on the governments.
Maybe we could find a way to help finance the project with leetchi on the?
Let's keep in touch.
Lovexxx
Lucie
It sounds promising, but until there are clinical trials, the responsible media has nothing to report.
They should report successful preclinical study more
Hi Lucie! I am following this closely as well. In fact, I have officially moved into the advocacy space and have been trying to figure out how to best plug-in. Like you, I feel that this info needs to be shouted from the mountain tops... and trials need to be fast tracked. However, I have found that several MBC organizations are saying very little about it. In fact, one person (a well-known/respected MBC advocate) told me that there is nothing to suggest this will work in humans. Well, I was a little bent out of shape on that comment... but I know she is right. (They even say this in the video you just shared.)
My bigger concern has been whether or not Bayer is slow-walking this. (Because I believe that Big Pharma has no real interest in CURING MBC... but, rather, keep it chronic so they can cash in long term.) In seeing what other people have written about it on this forum, in terms of reaching out to Bayer directly, is does seem that things are in the works and we can't expect clinical trials on humans until they do everything else first. (I am not sure who posted this within the last week or so, but reportedly they are researching ErSO with primates right now.) Frankly, I am with you on thinking that this treatment may be THE answer. And I feel very impatient, as do all of us who believe that science WILL come up with the answers... and can do so while we are still here. An earlier press release from Bayer had said that the hope was to bring this to market within 10 years. Unacceptable. So, for me, that is where the noise needs to be made.
I have tried to get some of these MBC organizations to start talking about this on social media, etc. I have found very little appetite for it, which reminds me that these gals have lived with this stuff a lot longer than me (diagnosed de novo in July 2020)... and with that comes an understanding of how this stuff works, including realistic timelines in getting clinical trials up and running. With all the said... I am completely with you on the whole "ErSO Watch" thing.
Cos
Hi MaryCos,Thank you for all your thoughts
I was the one who posted the first post on ErSO on this forum. Before that I posted it on inspire and a lady from this forum posted it here with the title “Let’s bombard Bayer…”
I was diagnosed in 2019 and am on my fifth line of treatment already which is a chemo drug Xeloda. We all know that it’s very difficult to treat this disease and how difficult is for all of us to live with it. It’s like a trial and error now I was very excited when I came across ErSO. I wrote to Professor Shapiro who invented this compound and got the generated response saying that they are very confident in their research but it takes from 2 to 10 years for a drug to hit the market. Then I contacted the ceo of Bayer and also filled out the inquiry form. I do not know what worked but I received a response from one of their executives. Inspire banned my accounts for giving people hope by asking them contacting Bayer. I was ver very upset. I went to this forum and asked people who are members of both to inform people on inspire who are waiting for updates. I am glad that more and more people are active and raising public awareness about this revolutionary and very promising compound. I approached some cancer organizations, celebrity who lives with MBC, news and media but got no response. Luckily I got some updated from Bayer. Bayer assured me that they did not obtain exclusive global rights to sit or to shelf this compound. They have a group that is working on it. I was writing heartbreaking emails to them asking to give this drug the first priority. I am sure that many people contact Bayer. They informed me in August that they are testing it on primates. Recently they said that more news will come towards the end of this year. If the drug clears preclinical testing they will start looking for sites for human trials. The contact told me that they will do it globally. Thus, I do not think it will be 10 years. In terms of being a cure or very effective treatment, it has a good potential. I spoke to the professor that developed another compound for mbc and he told me that ErSO is much more promising and closer to human trials because all toxicity preclinical is done He also believes that 99/100 % on mice is extremely good results.
He said that Bayer is following a standard protocol: the antitumor effect is tested on mice and then toxicity is tested on larger animals. Sometimes the independent study is also required to prove the research for FDA
Let’s keep our fingers crossed and hope. I have a faith in ErSO
Good luck to all of us
Best,
Marina
Hi Marina! I found out about ErSO when the press releases (and articles) came out around the same time. (And this info was circulating through many sources.) So, what I mean is, I didn't find out about it through the HealthUnlocked forum. But I do see (and appreciate) the elevated and sustained interest here.
On top of the rapid and complete results in mice (and I do know they have also studied rats and dogs so far), what really strikes me are two things. 1) Apparent lack of side effects/toxicity, and 2) that subjects responded to treatment a second time... meaning... ErSO is not necessarily something that can only be used once as relates to resistance.
So, I have said it before and I'll say it again... when ErSO is ready for human trials... I'd be quick to sign up, if eligible. Conversely, I want women (and men) who don't have a lot of options left to benefit from trials first. Above all, this seems to be a potential treatment where we don't need years to know if it works. I guess the big question is... what does it mean long-term for people who take it? Then again, for many of us, long-term is the difference between being here and not being here in terms of what this may do to our bodies beyond the initial treatment stage. I'll tell you this, though, if I didn't have many options left and this was only still available as an experimental med... I wouldn't hesitate to take it. I am sure many other people feel that way as well.
I for one want to thank you for reaching out to all these people to try to find some answers for us. Overall, we need to be making a stink about how little money is slotted for MBC research. So, for those who want to do THAT... I'd recommend you connect with METAvivor.
I am also keeping a close eye on Biontech. They think they will have an answer (and market availability) within 4 years. Or, so they hope. youtu.be/VdqnAhNrqPU
Cos
Hi MaryCis again. Thank you so much for your very detailed message and for the video. I watched it carefully but I did not find any information about mbc specifically. Did I miss it? In terms of ErSO. I do not think Bayer needs funds. My relative who does fundraising approached them and asked. They did not react. In terms of producing the drug. I believe that they will do their best because it will make the company a pioneer in treating mbc. The absolute need for a drug, the market size and therefore a potential profit will drive Bayer to do their best.
In terms of therapeutic potential you stressed. It’s very encouraging. Mice live Two years and if the treatment showed no recurrence for five months it means 20 plus years in humans. No toxicity is also very exciting as well as 99/100 % cure and no resistant to the drug. The current drug do have side effects and long term effects as well. If this is a one time treatment then the effects on the bodies will go away with time. I also talked to my cousin who does experiments with mice in Memorial Sloan Kettering Cancer center and she said that the study looks amazing. She shared that the best results she has ever achieved was 50/60. She also said that mice get sick after experiments and it’s obvious. If they were ok without getting sick meaning no toxicity it’s also promising even though the toxicity can be adjusted We just have to pray that same results will be seen in humans.
Let’s keep in touch and exchange information. Good luck to all of us.!
The fact that you didn't see applicability in the video to MBC surprises me. No, they are not focused just on MBC. Although, check out their website and you will see there is currently a study underway for folks with TNBC. In fact, here are all the things in clinical trials (with this company) as of today. biontech.de/science/pipeline
Thank you I did see the applicability. I just wanted to see something specific. I did find some new drugs for TNBC and metastatic TNBC but it’s not my case. Thanks again
Sure thing.
I try not to think that big Pharma doesn’t want a cure. At the end of the day, even with a cure people will still get MBC so there is a market. I wonder if they are just managing expectations.
Agree that ten years is too long to wait. My oncologist said though that these time frames are speeding up quite a bit lately. More like 3-4 years. Not sure if that is overly optimistic
Bayer paid a lot of money for the rights to this. I imagine they want it to succeed if it is indeed effective.
In the meantime there seems to be some early success with other things in the pipeline line like oral SERDS. I read they are more effective than Faslodex due to bioavailability. Am thinking of finding a trial I can join. Does anybody have information or experience?
Also, see the video I provided above. Right now, I am banking on ErSO and the brilliant, patient-serving scientists of Biontech.
Hi,I agree with you that Bayer will try its best to speed it up and bring it up patients. I also believe that the FDA Changed it’s approval process already.
Have you been on Afinitor? I am on my fifth line of treatment over two years which is Xeloda. I was on Faslodex with Ibrance then With Piqray which I had horrible side effects. Finally The MO tried an old drug tamoxifen many people are still on for some years but my disease progressed. She wanted to try Afinitor with letrozole but then changed her mind and gave me Xeloda due to liver Mets.
She said if somehow disease gets under control then the old drugs that a person took some time ago might be administered again. Or at least that group. I just hope that Xeloda will help. Please let me know if you find anything.
Good luck
Marina
Hi I agree with you. When I first found out about ErSO I started contacting different channels and news but got no reply. I do not think Bayer needs funds. My relative who is very active in fundraising for different cancer centers approached Bayer and asked. They were not interested in. I also approached a celebrity Shannen Doherty on Instagram who publicly announced that she lives with MBC but she did not reply. All articles came around July and August as a response to the original study published in the Translational medical journal. The titles were so encouraging but since that time I did not find any publication. One of our members posted a video from the research lab. I was very happy to notice that it came out on October 1. If you have any ideas please share. We should go on Social Media and Media in general
Good luck to all of us!!!
So, when it comes to research -- especially research that leads to a potential CURE for anything.... that comes out of NIH funding typically at the university setting. That's when companies like Bayer jump in with licensing, etc. At least in the United States, tax payers have already invested prior to this. And then we get it on the back end with, for example, Ibrance costing over 12k a month. Not a cure. Lots of side effects for some, including those that can kill us seeing how we have little to no immune system. And, our side effects are a secondary market.
I was not in any way suggesting that BAYER needs money. But I do agree that we need to hound them if it seems that getting to trial is unusually long. Some people might think I am over the top when it comes to Big Pharma motivations. Umm. I have no doubt that many conditions could have already be cured if giving up lifelong customers was in support of the financial goals of private industry.
I agree with you that we have to try our best to speed up the clinical trials. This is what we are doing. The NCI informed me that never the less they provided funds for the university research, now it’s up to Bayer. They can’t impact them. I thought they can. Let’s hope for a successful preclinical trial and speedy move into clinical trials. I tried to write heart breaking emails to Bayer trying to convince them that for us every day matters. I found out that the executive I communicate with there is an oncologist. Before he moved to Bayer he was treating patients. He is very understanding and supportive.
Good luck to all of us.
How do you know we may have a curable product from BioNTech in Four years?
"How do you know we may have a curable product from BioNTech in Four years?" Because they said so. Not in the video (I don't think)... but, yup. That is the timetable THEY are looking at.
As I sign off for today, here is my view on this. Pressure the WH and politicians rather than Bayer.
Thanks. But NCI said everything now is up to the Bayer Good luck
You too!
Thanks a lot Thank you for this conversation.
PS: "Up to Bayer" assumes the public has no say. Companies move goal posts once there is public outcry. Just saying. Same thing for politicians who promise a "Cancer Moonshot."
Agreed 100%. We have to use every avenue to get this done.
More info, and why this is not just about MBC... but even bigger. curetoday.com/view/-the-nex...
Public perception of MBC, media reporting
