Yes I'm a member of that group on facebook, and eagerly follow up for updates. It's very, very frustrating to know that we have a potential cure for this miserable disease, yet it seems to be setback after setback. To be honest I lost a lot of enthusiasm for ErSO when Bayer handed it back. I can't understand how that could happen after so much money was invested into developing it. Although I've been told since that happens regularly, I'm no expert in pharma. I'm more excited to read about the new SERD's that are in final stages of trials, and hope that they are available soon for us. Don't lose hope!
Hello Jools. I have been following it on a facebook page -ErSo Activism for Breast Cancer - and anywhere else I can find mention of it. Mainly American as it is still being developed by Systems Oncology but the members are pursuing it regularly and post updates, and are pushing for early trials and subsequent approval by the FDA in the US. Nothing concrete yet, but it’s good to see so much activism on the page, and get regular updates. Couldn’t find a UK page, and don’t have the energy currently to consider setting one up and linking it to the US page/information, or to start a lobbying campaign. Unlikely to be of help to me, trials and approval take so long but hope for the future though.
Hi Alison, I also was following the Erso story with interest, and was gutted when Bayer dropped plans to develop the compound. Systems Oncology have remained silent on why it was handed back to them. There are many guesses to why they dropped it over on Facebook Erso activation page, which are all speculation as no reason was given to the public. I will continue to follow the story albeit with less enthusiasm.
I’ve been reading about ERSO with interest & so pleased to see it getting some development but this was recently published so I’m now not sure if this is still going ahead.
ErSo is moving on and gaining support world wide may I ask why Macmillan wouldn’t have it discussed ? ErSo is our future it will happen and the benefits will be enormous we just need to keep it upfront and keep the pressure going
Thank you Jools. Hope your feeling better after your booster. Positive vibes to you and Kat for tomorrow. Nice we can support each other with our scans being similar times.
Thank you! I am so nervous it's unbelievable. I will update you soon. Very best of luck for your results too, il be keeping everything crossed for us both.
Great to hear your doing well Jools. I'm good thank you, I'm off all pain killers now (I was on zomorph, Baclofen and Paracetamol) which I feel better for. Just need some good scan results on the 9th Nov!!
Good luck with your scan results, I will be thinking of you.
Hi there Daisy, I'm feeling pretty good thanks. Onco reduced my palbociclib dose due to low neutrophils every month, and to be honest it's been a blessing, no mouth ulcers and I'm noticing a difference in my energy level this month, don't feel as wiped out as previously when on higher dose. I'm working full time still and managing ok. Hope you are doing well too xx
Yes it is very exciting, I just hope it moves to trials soon. I've emailed the CEO as well!!!
Thank you, I m keeping my fingers crossed for you. Do you mind me asking if you still feel well/ normal??
I'm feeling really well at the moment, that's the bit I struggle with feeling well and normal ish but also having stage 4 cancer. Don't get me wrong I'm not complaining I just struggle with it mentally.
I've been keeping an eye on this petition as well, it's great that it has gained so much support.. there's also positive feedback on the Inspire website regarding this potential new drug. It's very exciting! It needs to go to human trial ASAP! I emailed the CEO of Bayer lol oh well might as well start at the top 😂
PS good luck with your scan later this week, I've mine done and dusted now just waiting game x
Hi Daisy, I am excited about this drug also. I tried to share on Macmillan forum but they wouldn't let me, so I shared on twitter. Bayer have said they aren't going to sit on this drug, the results have been so dramatic.. hopefully it will go to human trial soon.
