Sad update about ErSO : Hi friends, I... - SHARE Metastatic ...

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Sad update about ErSO

Cureforever profile image

Hi friends,

I am sorry to be the messenger of a disappointing news. I am so upset

Here is the update from Danny Goss who is one of the administrators of “ErSO activism for breast cancer” group on Facebook.

A message from admins :

Like everyone else in this group, we were very disappointed today to hear through multiple channels that Bayer have decided to terminate the licensing agreement with Systems Oncology to develop pre-clinical drug ErSO as a cancer therapy. We do know that work continues on developing ErSO in the lab where it was discovered, and we maintain hope that Systems Oncology will continue to move ErSO forward towards Phase 1 trials in humans.

We are trying to get in touch with Systems Oncology to find out their plans for ErSO in the future, if we hear any news we will post it here as soon as we can. As all admin members in the group are also on our own MBC journeys, we know how difficult this news is to take, and we worry about the impact of the news on the members of the group. We think everyone here is incredibly brave while battling this insidious and hideous disease and we really believe there is good reason to maintain hope, not just with ErSO but with other, emerging MBC treatments. All the best to everyone and we will keep working to keep you as informed as we can.

73 Replies

But I posted happier news now I got a response that changed all that . Go to the group and read it . It from my reporter lead . You will be happy 😍

Lulu4545 profile image
Lulu4545 in reply to Ycats277

Hi to all,Could you give us more information on your happier news?

I think we all need it.

LOvexxx

Lucie

Ycats277 profile image
Ycats277 in reply to Lulu4545

It won’t fit but I received a nice uplifting post from a reporter that says it’s not mixed

Ycats277 profile image
Ycats277 in reply to Lulu4545

He said it’s not cancelled just another company is buying oicence

Debbigbang profile image
Debbigbang in reply to Ycats277

Ohhh well that could happen!! Bayers perhaps sold to another pharmaceutical company, maybe Pfizer? Either way it would be great that Erso not cancelled?

mariootsi profile image
mariootsi in reply to Ycats277

Ok.

Ycats277 profile image
Ycats277 in reply to Lulu4545

Sorry He is investigating it and he says that the earth so project it’s not over just Bayer gave it up and others will take over .

mariootsi profile image
mariootsi in reply to Ycats277

I wonder why Bayer gave it up?

Cureforever profile image
Cureforever in reply to Ycats277

Hi Stacy. Thank you very much for all your efforts. I read it as soon as you posted it but everything is up in the air now. I was ready for a clinical trial with Bayer. I am still very very upset. The researchers sold it to the Systems Oncology. Thus, they are the only ones who can deal with the future of ErSO. Best,

Marina

Ycats277 profile image
Ycats277 in reply to Cureforever

He just wrote back again I posted it on the group he wants to speak to one person. I’m waiting for one of the most knowledgeable people from our group to respond and contact him ASAP but I’m not getting any response. Who do you thinks the most knowledgeable? Thanks marina❤️🥰🌹💕

Cureforever profile image
Cureforever in reply to Ycats277

Stacy, I am communicating with you here and there. Thank you very much for everything you are doing. Danny is a member of this group as well. I believe his screen name is Dannygoss29. You may try to send him a private message or a public one. It doesn’t matter. Thank you againMarina

Ycats277 profile image
Ycats277 in reply to Cureforever

Marina lol 😂 I know , I don’t know how to send somebody a private message on here I’m gonna leave that to you if that’s OK. I sent him a private message on Facebook I have not had a response. I just want the reporter to get contacted immediately so he doesn’t forget that he made the offer to speak to somebody. I believe whoever speaks to him he’s going to publish the article. He’s also on television and a filmmaker

Cureforever profile image
Cureforever in reply to Ycats277

I just sent Danny a public message on health unlocked

Ycats277 profile image
Ycats277 in reply to Cureforever

That’s awesome thanks , no one is responding and I just fell lol and bent my wrist back. Oh gosh I’m in horrible pain . I might need to go to the emergency. I’m so upset. I got a try to drive I’m on my own. Speak to you soon

Cureforever profile image
Cureforever in reply to Ycats277

I am so sorry. What city are you in? You may go to the urgent care

mariootsi profile image
mariootsi in reply to Ycats277

Oh geez! Hope you are ok!

Ycats277 profile image
Ycats277 in reply to mariootsi

Thank you , I was for sure I either broke my wrist or hip but just bruised , I thank you , I must thank zometa or Xgeva 🙏👏🏼❤️‍🩹🌹❤️🥰💕Stacy

viennagirl profile image
viennagirl in reply to Ycats277

That is good news! M.

Ycats277 profile image
Ycats277 in reply to mariootsi

Thank you mariootsi , Stacy 🌹

viennagirl profile image
viennagirl in reply to Ycats277

Dear Ycats,

I hope you get someone to drive you to the ER. In our area we have a company called Wheels for Wellness and for a small donation will drive us to and from hospital and doctors visits. It is such a wonderful service. They will actually drive hundreds of kilometers. It is just so wonderful. Maybe your area has something like that. And I hope your wrist is just bruised or at the worst sprained. Hugs and best wishes Marlene

Ycats277 profile image
Ycats277 in reply to viennagirl

Thank you I’m fine 🙂

Ycats277 profile image
Ycats277 in reply to Cureforever

Darn it my mom is very upset , I will be off awhile :( ouch

Cureforever profile image
Cureforever in reply to Ycats277

Stacy. What is the phone cot reach out to the reporter?

Please post it on Facebook. I am very sorry for your pain

Ycats277 profile image
Ycats277 in reply to Cureforever

What is a cot ? His email ? I will give you what ever I have ❤️🌹

Ycats277 profile image
Ycats277 in reply to Cureforever

I just private messages you Marina through face book if that’s you lol .

Ycats277 profile image
Ycats277 in reply to Cureforever

Ash-har@scripps.com on my way to hospital:(

Cureforever profile image
Cureforever in reply to Ycats277

I am sorry. I hope you have no fracture. Does he want someone to contact him by phone or email? Did you post it on Facebook. I feel so bad for you. Hope everything will be fine

Ycats277 profile image
Ycats277 in reply to Cureforever

What’s a phone cot ? He wrote me over night asking me to tell him about myself . I told him my entire grim story . Maybe I’ll be featured in his movie , lol just kidding , but he is also a film maker . Wouldn’t that be wonderful if a movie was made . That would hit the hearts of many . I think my pain meds are messing with my mind , I’m daydreaming 😶‍🌫️ ❤️🌹good morning Marina 💐

Cureforever profile image
Cureforever in reply to Ycats277

Good morning Stacy, I hope you are fine. I do not know if Danny was able to get in touch with the reporter. I hope he did. Libby posted a message from the lead researcher saying that Systems Oncology is in charge now He also said that they will move it to clinical trials. But we were very close with Bayer. Now we are far from clinical trials. I had such faith that Bayer will start the clinical trials. It was very very upsetting.

Stay well😍🤞🙏💕

Marina

Ycats277 profile image
Ycats277 in reply to Ycats277

Yes he did the reporter contacted me over night . I’m trying to private message you on messenger through face book . Please open your messenger on face book xx

I am not sure how to send a private message here as well. Danny sent me a few ones. I will try to figure it out

Ycats277 profile image
Ycats277 in reply to Cureforever

Marina I have no idea either but I am going now to send you a private message on Facebook with my cell number and you can regular text me off here any time . 🌹❤️

Ycats277 profile image
Ycats277 in reply to Cureforever

You send them on messenger through Facebook easy peasy 🌹

Cureforever profile image
Cureforever in reply to Ycats277

Stacy,How are you feeling? How is your wrist?

I am worried about you.

Danny will contact the reporter tomorrow morning.

I hope there is no fracture there.

Good night

Marina

Ycats277 profile image
Ycats277 in reply to Cureforever

Hi , thank you Marina 🌹no break but my hip and wrist are injured ouch . Can’t wait to see what goes on with reporter . Danny wrote that he will get in touch when he has something . You are so nice and caring 🌹❤️🥰💕🙏

Corrina97 profile image
Corrina97 in reply to Ycats277

So sorry you have hurt yourself . Hope you recover quickly. Thanks for giving us back some hope🥰take care x

Ycats277 profile image
Ycats277 in reply to Corrina97

Thank you Corrina , so kind . I am hurt, I slipped on a tile floor and tried to stop my fall with my wrist /hand . Ouch 🤕. I went down hard . Xxoo 🤕❤️🌹👏🏼 Stacy 👏🏼

Cureforever profile image
Cureforever in reply to Ycats277

Hi Stacy,I am glad that there is no break there. What city are you in? I just woke up.

Keep in touch.

Best,

Marina

Ycats277 profile image
Ycats277 in reply to Cureforever

I live in Lauderhill, Florida , where are you from 🌹🌹

Cureforever profile image
Cureforever in reply to Ycats277

I am also in Florida now, Hallandale Beach. I live in New York but when Covid started I spend more time in Florida.

Ycats277 profile image
Ycats277 in reply to Cureforever

That’s awesome 😎 I go to Hallandale often ❤️🌹👏🏼🙏 I private messaged you on messenger in Facebook can you go and confirm that it you , lol I’m not good at all of this stuff .

Cureforever profile image
Cureforever in reply to Ycats277

Thanks. I am not good with Facebook but I will try . I opened a Facebook account especially for this group. I never use it.

Ycats277 profile image
Ycats277 in reply to Cureforever

In face book go to messenger , that is where we all private message everyone . It’s called messenger 🌹❤️ I left you message there 🥰

Cureforever profile image
Cureforever in reply to Ycats277

I did but I did not see it there. I am sorry I have to get back to work. I am working from home. I will get in touch with you later. Hope you are better 😍🤞🙏💕

Cureforever profile image
Cureforever in reply to Ycats277

I did not see your message but I use Facebook for this group only. Sometimes I use my husband’s access and sign my name underneath. I like this forum a lot and communicate with many ladies here. I go to Facebook just to check the news from our group and comment on them. I wonder if Danny got a hold of this reporter.

Ycats277 profile image
Ycats277 in reply to Cureforever

You have to open messenger on Facebook later after you finish work 🙏

well, there's still hope then...

Ycats277 profile image
Ycats277 in reply to Lulu4545

Correct ErSO is alive and well 🌹❤️👍🏼

Hmmm. Why would Bayer give it up if it is promising?

Debbigbang profile image
Debbigbang in reply to Pbsoup

I would probably say money??

Pbsoup profile image
Pbsoup in reply to Debbigbang

That’s my point…if it was effective they stood to make Money!

Debbigbang profile image
Debbigbang in reply to Pbsoup

There is more money needed to prepare for human trials. But to be honest the ins and outs of getting medicine from first stage on is confusing.

I had my onocologyst appt today and went over my CT scan. 2 bones had started to heal from my last CT scan, but thing good or bad on this one. The issue right now is my liver, last scan nothing. This scan some growth. She doesn't want to change medication right now as this is my first treatment of hormone medication, Ibrance/letrozole. Also, this my 6th cycle.

Is anybody else taking Ibrance and letrozole and liver leision as well?

Thanks

Deb

girlsptz profile image
girlsptz in reply to Debbigbang

Debbie first of all congratulations on the sclerotic activity seen in your bones. I am on your same treatment but don't have liver involvement. However many ladies start this regime as first line regardless of where their mets are located. I think though that it is wise for your oncologist to wait before changing treatments. Clearly for them to make this decision the growth likely is minimal and as measurements are compared based on the axial placement from one scan to another it might be questionable growth in size and a matter of interpretation. I would imagine your next scans will be in 3 months or so and if it is growing it should be clearly visible. I personally believe that changing treatments too quickly is not our friend. I wish you all the best and hope you get even more positive news with your next scan. Stay positive.

Sandra

Debbigbang profile image
Debbigbang in reply to girlsptz

Thank you ❤🙏. I try not to get upset about it. She is still happy with the progress, just the liver. I know we can still do radiation if need be. The lesion is on the middle. I guess just wait it out.she has scheduled another CT scan in 2 mths. Its crazy because I feel better than I have in years !! I am blessed with that, I am grateful 😁.

Deb

girlsptz profile image
girlsptz in reply to Debbigbang

Sounds like you are in good hands Debbie. 2 months will take you into the new year so might as well focus on enjoying the upcoming holidays. What will be will be and us worrying about it changes nothing. I see you are from Canada as I am myself so think it extremely important that we don't change treatments prematurely as we don't have as many options as those gals in the US. You will be in my thoughts but definitely stay positive. I have scans in a few days too so I know it is a stressful time. Take care.

Sandra

Debbigbang profile image
Debbigbang in reply to girlsptz

Hi Sandra

Yes I can get disappointed, but never as badly as I had when I was first diagnosed. This isn't a sprint, it is a slow walk lol. I have a Dr who wants to make sure, I like that about her. I have always said my liver will be the stubborn one. I put it through a lot the last 20 yrs. I know it work out fine. It's a good scan if they don't find anymore 🥰. Good luck wishes to you for your up coming scans and yes they are a bit high blood pressure pronded !! But you are a strong Canadian lady !!! Full of spunk and hope 🇨🇦🤗. Hugs from the east coast Halifax 🦞

girlsptz profile image
girlsptz in reply to Debbigbang

Thanks Debbie. I actually don't stress much about my scans anymore except I do feel slightly anxious the morning after them when I get up as I know my oncologist will call me with the results in a few hours. However I know I am fortunate that I don't have to wait days or for some poor ladies in the UK sometimes weeks to get the results. My oncologist and I are close and she is amazing so whatever is seen we deal with as a team. I have lived in Alberta since my early 20's but I was born in Newfoundland and of course have been to Halifax many times. Take care.

Sandra

Cureforever profile image
Cureforever in reply to girlsptz

Hi Sandra,Good luck with your scans. I am always very nervous but you are strong and optimistic

Best,

Marina

girlsptz profile image
girlsptz in reply to Cureforever

Oh thank you Marina. I used to be very nervous too in the beginning of this journey but a very wise lady here reminded me ' that whatever is on that scan we are already living with' and my oncologist reminded me that cancer loves stress so staying calm is annoying the heck out of the cancer.....strange analogy but one I try to live by as my goal is to make those cancer cells cranky every way I can.

Sandra

Cureforever profile image
Cureforever in reply to girlsptz

Thanks Sandra for your suggestions. You are a very smart lady. Recent news about ErSO gave me so much stress that I noticed extra gray hair on my head. I am trying to get calmer. You predicted this. I still hope that the Systems Oncology will move forward with ErSO but it’s still only a hope. Best,

Marina

girlsptz profile image
girlsptz in reply to Cureforever

Marina my gosh try not to stress so hard over something you absolutely have no control over. I don't want you to say that I predicted this.....I had hope for all of you but it was just not at a point where I would consider it even a remote possibility. Also I don't belong to Facebook and have no desire to be but anyone can check on a group which I did for fun this morning. Here's where I again mention false information being shared and to be careful of what you read....someone posted that SO is presenting Erso at the next SABCS conference and probably is getting everyone excited....in reality that was a poster from 2019 so not part of this conference at all. Again no fact checking at all.

I live in Canada so honestly if it went to a clinical trial (beyond stage 1 which I would never do)I wouldn't have had access anyway so the point was mute for me really. If you don't already I would highly recommend trying to do a small meditation daily. It really helps center your thoughts and calm. Insight Timer is a wonderful free app that you can download to your phone or tablet. It has something for everyone including beginners.

Sandra

Cureforever profile image
Cureforever in reply to girlsptz

Thank you Sandra for your suggestions and support. I know that someone posted a wrong information about SO. It was in comments. But the researchers are still optimistic. Thus, I still have hope. I tried to meditate but it did not help much. I also go to the Accupunturist which helps but very little.

Best,

Marina

girlsptz profile image
girlsptz in reply to Cureforever

Being able to meditate does not come naturally or easy to most people, nor did it to me but if you keep trying it gets way easier and can be so beneficial. Good luck and take care.

Sandra

Cureforever profile image
Cureforever in reply to girlsptz

Thank you so much.

mariootsi profile image
mariootsi in reply to girlsptz

Sandra good luck with your scan. Always a concerning time. Stay strong. We are all with you.

mariootsi profile image
mariootsi in reply to Debbigbang

Deb, glad to hear bones are healing. Good the onc didn't change meds. Hopefully next scan will show no liver change.

I think I’ve become very cynical about the pharma companies. It sounded promising but I always wondered about the cost. At the prices that my hospital bills for these drugs. How could they survive without that income?

Yes that is disappointing but I am so suspicious of big pharma as it is. I kind of feel that they’ll never develop a cure for cancer. Why would they? They’d lose way too much money in doing so! Sorry. I don’t mean to be offensive.

Such sad news!

I am still optimistic that ErSO will eventually go to clinical trials for mbc. It might take longer than we would like to hear but I believe it will happen. Too many women are suffering and there is going to be pressure on scientists to help us all to find a cure. Politics might be involved and that is the only part of this that makes me sad. A cure for mbc is also a financial loss for drug companies so it wouldn't surprise me that they have put pressure on Bayer to not go ahead with the trial. I hope I am wrong. Thank you for keeping us informed. Hugs Marlene

Hi Marlene. Thank you for being so optimistic. I hope that ErSO will go to trials soon and be successful for all of us. Hugs,

Marina

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