Hi wonderful people. I just would like to give you hope. After I read an article in Translational medicine published by Doctor Shapiro and his team from University of Illinois about a new compound ErSO that showed 99/100 % success on mice. Then it was tested on rats and dogs. The pharmaceutical company Bayer obtained exclusive rights for this drug. I consulted with the professor of pharmacology that develops drugs for mbc and he assured me that this drug has a novel mechanism and no drugs like this one are available now. I contacted the Ceo of Bayer and also filled out the inquiry form on their website to get more information about this revolutionary drug. Some time later I got an email from their top executive saying that the drug is on preclinical stage as of now. I hope Bayer will move on quickly and it will go to human trials soon. It’s so painful when you have a metastatic breast cancer that is currently incurable to read the signs Let’s end breast cancer! I am so thankful to the team that developed the ErSO I would like to believe that it will be the cure. You may research articles about ErSO. I just wonder that they all came out around July and August and no information since that time unless we contact Bayer. Once HIV was an incurable disease but not anymore I hope this drug will go to human trials soon
Good luck to all of us!!!
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Cureforever
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If Bayer are doing trials they are really the only source of information. Until they have evidence to support their claim no other person/organisation can add any more information.
Things do seem to be looking good for us though with so many new drugs etc coming to market
Hi , Thanks for your reply and thanks to all wonderful people who replied Yes Bayer is doing pre-clinical trials now but if we and cancer organizations and other reputable sources contact them about their progress, they may move faster. I got the information from their executive that more news will come towards the end of the year. The same information a person on inspire got from one of the professors who invented it.
I hope it will work out for all of us. It looks very promising on animals.
What new drugs are you talking about?
I am on Xeloda now, just started because of progression. ErSO eliminated all Mets in mice to undetectable levels and for 4/5 months no new ones were seen. It correlates to 20 years in human because mice live 2 years. I hope it will be as effective in humans.
I'm in the UK where NICE will decide whether it should be given to UK patients
That is where the delay is likely to be for us. I would urge all UK patients with mets to write to NICE.
I have managed cancer clinical trials.
The trials design along with review a d approval process means the time cannot be reduced. They need 'x' amount of people to be followed up for 'y' time to prove the trials hypothesis.
If the results are more significant than anticipated there could be a case to stop and take it to FDA approval if allowed.
Hi Anders,I was told that Bayer is planning global human trials when it gets to this. I am in the USA and do not know anything about UK. I can just give you information I got fro Bayer. They said that after or during phase 1 trial if successful they may seek for a compassionate fda approval. Also after phase 2 if successful they may seek for accelerated fda approval. I believe it means expedited. Good luck to all of us!!!
Hi Anders. After contacting the ErSO group my contact told me that more news will come out by the end of the year. I will email him a little later. But the information he gave me before was different. I told him that I would like to participate in trial at any country in the world. I am on my fifth line of treatment over two years and my disease is progressing but my oncologist is saying that I still have options. She still calls it a chronic disease. Let’s hope. When I told her about ErSO she said that she was not recommending me clinical trials yet but if the drug is so promising and shows curative potential why not. Bayer said that theoretically after phase 1 human trial they may seek for a compassionate fda approval. They explained that people who did not get to trial may get the drug. They also told me when I asked them if the drug can have an expedited fda approval that after stage 2 trial if the drug proves to be a very effective cancer drug they may seek for a accelerated approval which I believe is expedited. It’s still too early but I have a faith in it.
Hi again. What other new drugs are coming? Are you aware of some? I got the email from the Director of research center in nci. He also said the following:
The ErSO results are indeed interesting. Please note that some of that work was funded through an grant from the NCI. There is much clinical activity going on in several cancer centers and industry and academia are pursuing this promising new avenue hopefully leading to positive results, and soon
When I asked him specifically about ErSO he said that it’s exclusively up to the Bayer now.
Being a U of I alum and a metser, this is of particular interest to me. I am so hopeful it will prove useful in humans. Until there are clinical trials, we won't know. I'm thankful that there are scientists doing their best every day to try to help us. Go Illini!
Hi,It showed the very promising results on animals. 99/100% of human tumors in mice disappeared and did not come back Also the professors indicated that if tumors do come back it can be treated with the same drug. Let’s hope. The big pharma Bayer obtained the exclusive rights. They are working on it. The professor I am talking to who develops mbc drugs told me that it’s a very good move.
Hi, I sent the email to the CEO of Bayer Werner.baumann@bayer.com and I also filled out the inquiry form that I found on their contact us page. Thus, shortly I received an email from one of their executives. You can find updates in my message thread. I have faith in ErSO. I did sign the petition gassy 29 provided in his replies. Good luck to all of us!!!
Let’s hope. There are many articles published around July and August as a reply to the original study published in Translational medicine. One article has a video interview with Professor Shapirothedenverchannel.com/news/n...
I have a good feeling about ErSO, I've had contact with the inventors as well and it feels like they are quietly confident in its ability to become a very effective treatment option for us. After being one of the very unlucky men diagnosed with MBC a few months ago I've been researching emerging treatments ever since. Its ErSO (and to a lesser extent Car T cell therapy) that has given me the most hope. I'm just praying that it moves quickly enough for us. I also found this if anyone is interested in signing :
Hi Danny,This is Marina who posted the original post about ErSO on inspire. Unfortunately these site banned my accounts for encouraging people to email Bayer. I was informing people and giving them hope. They called it “email solicitation “. I am very very sad with this issue. I am glad that this company is smarter. I asked one member who is on both forums to inform people on inspire that I got an email from Bayer a few days ago. I posted it on Inspire on two boards on ErSO but they erased it. I am so so upset with them. The person I am contacting with said the following”Unfortunately, there is no new information at this time. However, it is hoped (but can’t be promised) that there will be enough information by the end of the year to make a decision regarding ErSO. “
It sounds encouraging. I hope it will proceed to human trials and be proven safe and effective on humans. I am on my fifth line of treatment over five years and unfortunately my disease progressed. It started from a few bones, now it’s in many bones and liver. Thank you for being very active and informative about this invention. It gives me hope and strength. Thank you for posting the link to the petition. I will definitely sign it. Good luck to all of us!!!
I guess these sites think that some people (not saying you at all) but that some people get compensation to push these type of drugs and other new drugs for other medical illnesses on boards that related to their illness to get more funding. So rather than have to decide who may or may not be getting paid, they decided it best not to have anyone mailing or encouraging emails to these pharmacetuical companies. I am sure if it is as good as it states, eventually we will be hearing more about the drug on TV and articles. Thank you anyway.
I agree but they should read it first. I was giving people hope and encouraged them to contact the company because this is the only way to encourage them to move on quickly I am very upset with them. I am glad I found this forum Hope ErSO will go to human trials soon and will prove to be effective.
I got two replies from you in my email but could not find the second one to reply. It starts that Maybe right now, they are spending most of their time on vaccine for virus.. I believe eventually will be something out there....I think an opposite. Bayer missed the boat with the vaccine and they will try their best to create a drug that will make a difference. I believe ErSO is the one. Breast and met breast cancer affects more people than covid does. Developing this drug will make them a pioneer in treating the metastatic breast cancer
Hi Marina, I'm sorry to hear about your progression. Thank you for the information above about human trials. I am praying that ErSO is effective in humans as it is in mice. I've never been religious, but I have a strong positive feeling about ErSO that I cant explain. Best wishes with your new treatment and lets just hope it gets to phase 1 very soonRegards
Hi Danny,Thank you for your reply. I also have faith in ErSO. I was trying to click on video but could not activate subscription so far. Thank you so much for all your updates. I live every day with hope. I already replied to some people that I keep consulting with the professor who develops mbc drugs. He recently developed fox-68 compound that works with chemo. He said that ErSO is much closer to human trials and is very promising. The fact that big pharma licensed it right from the lab is a very good sign. I am like you. I have not been religious but I pray to God to help all of us. It’s so difficult to live with this disease. I lost a joy of life and have been on antidepressants since diagnosed. When I found information about ErSO I got much better. Despite my progression I have hope for cure or at least a very effective and prolonged treatment. Thank you for your support. What treatment are you on? Ibrance with exemestane worked for me for one year. You were just diagnosed. Hopefully we all get some treatment that would hold us until the ErSO comes out. Thank you for being very active. Please tell people on inspire that I can’t answer them and inform them that more news will come out towards the end of the year. Let’s keep our fingers crossed. Good luck to all of us!!!
Hi DannyWhat did you find out about cart T cell. I contacted the nci They treated only one lady She was cancer free for 22 months when the article about her and the professor Rozenberg who treated her came around. They told me that after that lady they had some success with 2 or 3 patients. Now their facility that does this is under renovation but they are collecting patients data for further trials. They plan to reopen in October. I found this treatment the way the described it to me very difficult. Do you have more info about this? I would rather to participate in erso trial if it comes along. Keep in touch
Hi Marina, I'm so grateful for all of the shared knowledge here, I just read about BioNTech in other post which is something else I can now research In regards to Car T treatment, I have found an Australian biotech company called imugene has licensed a product called onCARlytics (developed in the City of Hope, California) which will go to phase 1 in 12 months time. It is a combination therapy using an oncolytic virus to deliver a CD19 protein to solid tumors which is then targeted by Car T therapy. I live in Australia so it is of particular interest to me as I believe the trials may be more accessible for me. I emailed imugene and they plan Phase 1 in 2022. Car T therapy has been a revolution in blood cancer treatment and has had a 60-90% success rate in blood cancers such as Leukemia and Myeloma but so far has limited success in solid tumors.........onCARlytics aims to change all that. Watch this video :
I think another poster wrote "lets not put all our eggs in one basket", which I think is great advice.................ErSO looks very promising and I believe it can help us, but there are many other treatments being developed as well and I truly believe there are good reasons to have Hope.
The latest reply from BayerI hope it will go to human trials. I do not like the part in () Even if the decision is made. I can’t imagine that such successful study wouldn’t go to human trials.
Unfortunately, there is no new information at this time. However, it is hoped (but can’t be promised) that there will be enough information by the end of the year to make a decision regarding ErSO. I have asked the team to inform me as soon as possible so that I can inform you.
Given that information, I would suggest that you explore some other opportunity in the interim (even if the decision is made to move forward, it will take at least several months to get the protocol approved and trial sites open).
I know that every day of waiting may seem like an eternity for someone suffering so much as yourself but there are regulatory and legal steps that need to be taken.
Hi Danny,Thank you very much for sharing all info with us. I did call City of Hope recently but my oncologist told me that I should use the approved options first. I am on Xeloda now and hope it will help the progression. Car t is very premature for solid tumors but maybe in the future it will be the option. They do not mention MBC in the video but talk about it in general. What treatment are you on now? What Mets do you have? Mine started with the bones back in 2019 and recently spread to the liver. Unfortunately all current drugs help if they do for a short period of time unless you are very very lucky. My hope is for ErSO. I would like a (as everyone else)a long term treatment or a cure which is better. Please keep in touch. Good luck!!!
Hi Danny again,Did you ask them if they expect this treatment will treat metastatic breast cancer when it goes to trial? My oncologist said when I asked him two years ago about car T cell therapy that it’s very premature for solid tumors but he believes that it might be the future. My new oncologist said that immune therapy is not treating mbc yet. TNBC only is treated by some immunotherapy such as the drug keytruda. Please share your research. Thank you very much.
Hi Marina,I got the below response when I asked imugene about whether it is effective in treating Breast Cancer :
"The hypothesis is that onCARlytics would be able to treat any solid tumours in combintation with a CD-19 targeting therapy and so far we do have pre-clinical data indicating it is effective in breast tumour models. Unfortunately, our onCARlytics trial is 12 months away from being initiated. "
I have been on Tamoxifen but since my diagnosis of bone mets (they are actually calling it Oligometastases as its only two small spots) I have had SABR radiation and I think I will also be taking Xeloda. On a fresh biopsy my ER expression dropped to 20% so my onc thinks this is the best first treatment to try. She said we can also revert to hormone therapies down the line if need be.
Hi Danny,Thank you for this information. It sounds promising.
I am glad that you only have two spots and it’s not progressing. I was diagnosed in 2019 with bones Mets. It was a few but unfortunately after my first treatment ibrance and examestane stopped working after one year the disease started progressing. I am on my fifth line of treatment now, Xeloda, Before I was on tamoxifen for three months but it did not control it. The last scan showed a progression to many bones (15 Spots) and liver. I am very upset. My MO says that we have to find treatment that will stop it and take it under control. I hope that Xeloda will.
I have faith in ErSO and hope it will come along. The email you got was a generated one. I got it back in August from the Vice President of Medical affairs USA. I started communicating with him from time to time. I was sending him heartbreaking emails and he was responding with the personalized emails. His last email I copied for you.
I hope that they will start the human trials soon. I believe that such a promising drug can’t fail nevertheless he sometimes discourages me saying that some drugs that show remarkable effects on animals fail on humans. I just would like to believe that it wouldn’t be the case.
Hi Danny,Please go on Facebook and read the post from Stacy. The reporter wants the most knowledgeable person who received the letter from Bayer yesterday to talk to him. You are the admin and I believe that you are the most knowledgeable and educated person to talk. I am not sure if you received the email yesterday but I posted all three emails that I received yesterday. Thank you so much!!!
Hello Cureforever, thank you for sharing this hopeful and great discovery. Please could you tell me how you did to contact the Ceo of Bayer? ( or to apply trough the right website on the inquiry form) and I wish to participate ASAP to the clinical trials although I m leaving in France Paris. Thanks a lot for your kind reply. Best regards. catherine
A new video I found today on ErSO, I think this is quite balanced and I agree with girlsptz above that its very early in testing. I still feel very hopeful
Thank you Danny. I watched the video. Very promising. It came out in October. It means that more information may come out soon. I wondered that all articles were published around July and August and I haven’t found anything since that time. Let’s hope that it will be as effective on humans as it was on mice. The professor I consult with said that toxicity can be adjusted. I hope that anti tumor effect was as it was shown in this video. Thank you Marina
Hi Lucie,I was the one who posted info and started this thread. I have a big faith in ErSO. Please read my replies to other posts. Also read giddy29 replies and watch the video he posted. I live with hope now. Good luck
Hi Lucy,I posted the original post on ErSO. Read my new post as a comment to “If anyone received reply from Bayer” They told me that more information will be coming towards the end of the year. I hope they will proceed and open the clinical sites for stage 1. I also hope that due to its novel mechanism this dug might be a cure or a very successful treatment. I consulted with the professor of pharmacology who invented another drug for mbc. He believes that realistically the stage one trial may start in 8-12 months. He also said that ErSO will be the first drug moved into clinic as fast. But I still believe for an even faster move. Good luck to all of us!!!
Hi Sandra, Yes, it is a compound but a very promising one with the novel mechanism of action. I spoke to the professor who develops mbc drugs. He recently developed another compound fx-68
But he is saying that ErSO is much more effective in preclinical studies. He consulted me on its mechanism and it gave me more faith and hope. The three days in mice is not the same in humans. Mice live two years. He said that first they test the compound on mice for anti tumor effect. Then toxicity is tested on larger animals such as rats, dogs and primates. He said that toxicity can be adjusted. My cousin works in Memorial Sloan Kettering Cancer center and does experiments with mice. She said the best results were 50 sometimes 60% but 90/100 is very good. The same Professor said that the fact that big pharma licensed it right from the lab is a big hope. I just would like to believe that it will work on humans. It took researchers so many years to come up with it.
Hi everyone,Thank you for all your posts. I agree that the compound is on preclinical testing now but we have hope for cure or for a very effective treatment. I consulted with the Professor who develops mbc drugs and he assured me that no compound was ever developed in labs like this one. When I asked him if he knows any other drug that is in research now that works like ErSO, he said NO. He developed another one fx68. It is also on preclinical stage now but much further away from human trials than ErSO. His compound works in conjunction with chemotherapy. My cousin who works in Memorial Sloan Kettering Cancer center and does experiments on mice said that she has never seen 99/100 % results. The most was 50/60. The professor informed me that ErSO has been going through the standard protocol: first the antitumor effect is tested on vitro (chemicals) then on vivo (mice). Then the toxicity is tested on larger animals such as rats, dogs and finally primates. He said that the toxicity can be adjusted. He told me that ErSO has gone through this stages. The fact that giant pharma licensed this drug right from the lab is a good sign. They are probably doing more testing now. It used to be very difficult in the past to get the fda approval but we all witnessed that it changed Covid vaccine was approved within a year. I am positive that more people suffer and will be diagnosed with breast cancer and mbc than with Covid. Thus, I believe the absolute need for a drug, the market size and the expected profit should influence Bayer to move quickly. Their success will make them a pioneer in treatment of mbc. Let’s hope. Good luck to all of us.
Hi Sandra. Thank you so much for your reply. I do not know your treatment plan and your personal situation but please be more hopeful. I am on my fifth line of treatment which is a chemo drug Xeloda and the disease keeps progressing over the last year. (I was diagnosed in 2019.) but my MO is still optimistic saying that we have to find treatment that will stop the progression. I also know that now the doctors recycle the previous treatments after some time. I am on antidepressants and lost some joy of life. Since I read about ErSO and started consulting with professor who invented fx68 as well as contacting Bayer periodically I started gaining hope. You are absolutely right about fx68 but they have financial issues. Just now they found a company that may invest. The professor said that this drug is 18-24 months from stage 1 clinical trial. The very same Professor told me that ErSO completed all necessary toxicity studies and is much closer to human trials. He does have faith in ErSO based on very successful animal studies. The last email I received from Bayer was the following:
Unfortunately, there is no new information at this time. However, it is hoped (but can’t be promised) that there will be enough information by the end of the year to make a decision regarding ErSO.
This executive consults with the ErSO team before informing me.
I told him that I would like to participate in phase 1 trial. In his previous emails he said that trials will be conducted globally but there will be some in the USA if they proceed. Hopefully they will. I do not know what country you live in.
Also the same person informed me that they may seek a compassionate fda approval after phase or during phase 1 and accelerated fda approval after phase 2 if this drug will be proven to be successful cancer treatment. Professor who developed fx68 told me that it’s a big success that big pharma got the exclusive rights for global production of ErSO. He could not get this for his drug. This is why it takes so long. I also contacted nci and they told me that they sponsored the ErSO research but now everything is to the Bayer. I thought that they will know if nci will be listed as a potential trial site.
Good luck to you I hope you and all of us will see the cure.
I am not sure why you are saying that the number of Mets matter. The mice had multiple human Mets which were gone Moreover when I asked Bayer how people who could not get to trial can benefit, he said that compassionate use might be an option. I asked professor who developed fx68 if he thinks phase 1 is safe. I did not get his answer yet.
Thank you so much Sandra for your reply. I am so glad that you have a great oncologist. I see that you are a very knowledgeable person. I was very upset and discouraged when I was diagnosed in 2019 nine years after the primary breast cancer. I was ok for one year when ibrance worked but then the disease started progressing. I lost some joy of life, went on antidepressants despite the fact that my oncologist says if the right medication is found it will stop the progression. She keeps saying that it’s a chronic disease now but I understand that current medications work if they do for a short period of time unless a person is very lucky. I can’t say about myself that I am positive now living with this diagnosis. I used to be positive. When I found information about ErSO, I started having hope and pass this hope to other people. You might be more realistic than I am but I have faith in ErSO. I also believe that now it’s easier to get the fda approval I asked Bayer rep if it’s easier for a drug to be approved in another country and he said that it’s easier in US. The financial incentive for Bauer is obvious and tremendous. That very same person said that they did not obtain a license and global marketing rights to sit on it. He said that the drug was given a first priority. He said that They have to make sure that it’s safe and effective . Based on professor”s who invented fx68 words, they are probably doing more testings. Lets wait and see and hope. Good luck to you and all of us!!!Marina
Hi Marina! I so admire your spirit!
You've gotten some great input/advice above, but I'll add mine...
The longer I dwell in this realm...i.e. MBC, trying to stay alive...the more I realize that the science around it is still pretty squishy, which might feel uncomfortable. I have issues with how NIH/NCBI studies are conducted, and with the profit motive in pharmaceuticals, and also with the authoritative tone of some docs, etc., who might give patients the impression that this stuff is carved in stone. I think it makes *them* feel better but doesn't serve *us* particularly well. I'm lucky to have an oncologist who admits this...
I'll recommend the book "Emperor of all Maladies, a history of cancer", if you're interested, to perhaps understand the degree to which the medical community has always shot into the dark....This is not to take away from the fact that many great, life-extending drugs are benefitting some/many of of us....
Here's my real advice: Don't put your eggs in on basket. There are many things you can do to try to keep things at bay. Many (most?) Phase I trial drugs never make it to market, likely for good reason. Hopefully ErSo will be a breakthrough....but sometimes Pharma companies do press releases, early results, etc., just to try to get funding/venture capital $$. But sometimes it's real, I'm sure. So if I were you, I'd move in several directions at once...like, why not? Hardcore exercise, real fasting, FIR, various supplements, off-label drugs, etc. etc.
Have faith in ErSO. Let’s hope it will be a cure or a very promising treatment. I spoke to the professor that developed Mbc drugs and he said that nothing like ErSO has ever came from the lab. Good luck to all of us!
I find that very encouraging! And not to beat a dead horse (god this phrase makes me sad ), but please just know that Phase I to II to III to "covered by insurance" is a long road...Why not attack the enemy on all fronts?! My very best!
Lynn
in reply to
Just remembered that I've always told my children, "have plan A, great! but also plan b, c, and d, and more often than not, you'll find that plan b or c turns out to be better... .
Hi Lynn, I think I may have asked you before but what is FIR, and what supplements & off label drugs do you take. I'm 75 and have been on Ibrance for almost two years. So far Ibrance is working but always looking for anything that's going to keep away mets.
Hi AuntC! FIR = "far infrared", which some people do as a sauna and others (including me...) do as a heating pad, generally with stones like jade/tourmaline to increase penetration.
here are real NIH studies of the potentially beneficial effects...one that sticks out in my memory looked at effect on five types of cancer, and there were benefits for three of the five, but *not* breast cancer. I speculated (made up?) that breast cancer in this case was primary but what I'm interested in is bone mets...The idea is that you heat up the bones, which weakens the cancer cells. In lab conditions, cancer cells die if heated up to something like 110 degrees (actually a bit less, I think...) for some period of time (minutes, not hours). So I crank it up to 150 and lie on it to heat up my spine...
Unlike a normal heating pad, I can feel that this heats up my "core", e.g. I wear a t-shirt so that it doesn't burn my skin, and then after a little while I sweat pretty profusely from my face...the warm feeling inside remains after I stop the heat...
Re: supplements, I don't do too many and even what I do is spotty, but I understand D3 + K2 are really important for bone mets, plus I do a mushroom combo (turkey tail, etc.). I also do low dose aspirin and Claritin, which I think are anti-inflammatory...
I also started the COC protocol earlier this year...I was skeptical for sure...but I *might* be a convert, e.g. my 2.5 year trend toward progression was halted and actually reversed a bit last scan, but I'll wait for one more scan before reporting out to this group!
My very best to you, I'm so glad the Ibrance is working for you! I've been on it almost seven years, I hope the same and even better for you!
Hi Lynn,Thanks for sharing. I was on Ibrance for only a year before progression and am on my fifth line of treatment over 2 years which is xeloda. I just started after three last scans showed a progression to new bones and liver. I always thought that sauna and heat are not good for cancer. What is coc?
Hi Lynn. What is coc protocol? You were extremely lucky in regards to Ibrance. I was on it for one year until progression. I just hope for ErSO. I am on Xeloda now, just started. Best,
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), but please just know that Phase I to II to III to "covered by insurance" is a long road...Why not attack the enemy on all fronts?! 
Low haematocrit/ibrance/breast cancer metastatic
Metastatic Breast Cancer Project, Cambridge, Mass. 
Updated Insider's Guide to Metastatic Breast Cancer
