Current/Future Cancer fighting drugs provide hope..Is 10+ yrs with MBC becoming common? 🙏🏼❤ Any updates with ERSO!What's others thoughts?

[AutumnLove]

From what I have been reading; With the new Cancer fighting drugs currently available it seems totally possible to close in on the 10+ year Mark with MBC.. I know every individual/situation is different and the statistics are abit skewed.There definitely is hope especially when comapred to the 80s and even 90s!🙏🏼❤ Would love to hear others thoughts and experiences.. Positives breed positivity!🙏🏼❤😊

[Ycats277]

Hi , this is Stacy ,I am on my first line of therapy since MBC 5 years ago . 6 weeks ago had my Pet scan and it was the first time my doctor said I’m in remission. (NED). Then I received my faslodex injections in rear on each cheek muscle , Xgeva injection in arm and went home to take my Verzenio pills , later that day realized I received another generic which caused a severe reaction and I was miserable . Now 6 weeks later still have the rash (healing slowly )I can’t get approved for the Faslodex by Astra Zeneca which I was given for the first three years and had no problem. Go to find out for the last year and a half I’ve been given generic all different ones and I’m allergic to the preservatives that keeps them from having to be refrigerated. So now of course he won’t give me the generic they gave me that horrible reaction and I can’t get approved for the faslodex by Astra Zeneca my insurance company will not approve it. I’m so scared can I just gonna die. What does somebody do if they can’t get approval those shots and I can’t take the generic. I can’t afford to pay for. I am praying for ErSO so badly . 🌹🌹

[AutumnLove in reply to Ycats277]

Wow.. And I remember u telling me you were in remission? How quickly things can change..So why cant u go on the prior ones from before the rash? Was this first time in the 5years that happened?

[Ycats277 in reply to AutumnLove]

Yes

[DDIL1 in reply to Ycats277]

Can your Dr. Do a peer to peer review with the insurance company? I’m sure he can submit pics of the rash and advocate for the med you need. Worth a try. I want the FES Pet scan and my onc said if they deny it he will do a peer to peer reviews and send an appeal.

[jersey-jazz in reply to Ycats277]

Write a big hard copyletter to the head of the organization. If this happens to be the doctor, all the better. Copy it to every person higher up in the medical framework where you live and don't forget to send a copy on to the politicians. If you don't get very quick action, threaten the doctor that you will send a copy to the newspaper. If, after three days, there is no reply, send it on to the newspaper. This should get a resolution and you fixed by the time the next dose.

[Cureforever in reply to Ycats277]

Hi Stacy,I also believe you may want to contact the company. Also I remember when one of my drugs was not approved, my NP in NY contacted some Patient Assistance line and I got a call from them. They wanted me to fill out some paperwork but my insurance approved it through prior authorization. Some insurances need prior authorizations from the doctor for drugs they do not approve. I was going through this hassle a few times with all those expensive drugs.

I hope you will get it. It can't be the other way. The manufacture may suggest you some way.

Best,

Marina

[Ycats277 in reply to Cureforever]

Thanks , was wondering how you are ? I looked for you but with you being so private and only being able to find you in this group or ErSO I gave up . I exchange other info with others so we can contact each other outside easily. I understand your hesitancy but don’t think that I haven’t been wondering, just no way to find you or the Patience to look . Hope all is well.

[Cureforever in reply to Ycats277]

I appreciate your attention. I have been very busy at work. I am also on “MBC trials and innovative treatments” group. I post a lot of stuff there. I also like stuff people post there. There are no restrictions. My posts go through at that very same minute. This is about it. I hope you will resolve the problem with getting brand Faslodex. I do not have anything new. All my appointments are next week. I am very nervous but try to work a lot and not to think about it. Thank you very much for asking. Good luck

[AutumnLove]

I hope it works out for ya.. U are doing so well hopefully it continues, besides rash!🙏🏼❤

[Ycats277 in reply to AutumnLove]

Thanks I will use that info ty

[Ycats277]

I’m stealing your post , not my intention, can I delete my response so they respond to your words . I’m sorry 😢

[AutumnLove in reply to Ycats277]

No. Dont do that!😊❤

[Ycats277]

I’m stealing your post , not my intention, can I delete my response so they respond to your words . I’m sorry 😢

[AutumnLove in reply to Ycats277]

Dont do that. I want you to get help!🙏🏼❤😊

[Ycats277 in reply to AutumnLove]

So nice , I’m sorry 🌹🌹🌹🌹🌹

[AutumnLove in reply to Ycats277]

Ty❤

[8576]

It seems there are more positive then negative remarks here. A win in itself. Myself II have been on Verzenio and Tamoxifen for 6 months now with good success. I have had no progression since the first one on this combination. I decided to stay on it even though there was progression because the next step was Chemo and I had pretty well rejected that. There was a natural thickening of the wall of the uterus which we weren't sure ws natural or caused by the Tamoxifen. My point being there are other combinations so talk it over with your Oncologist.

Cheers, June S.

[NPmary]

Research has revealed that first line treatment with CD4/6 drugs plus aromatase inhibitor (example: lbrance and Letrozole) median overall survival is 63.9 months. This is a huge improvement. I have been on these meds for nearly 5 years.

[AutumnLove in reply to NPmary]

Ty😊🙏🏼❤

[AutumnLove in reply to AutumnLove]

Wow! So median on the 1st line of treatment is over 5yrs Thats very postive indeed.🙏🏼 ❤

[Kaydub in reply to NPmary]

Yeesh. Kind of depressed that I got so little time out of it.

[Cureforever in reply to Kaydub]

Me too. I was on it for one year only

[Kaylab in reply to Kaydub]

Me too. 10 months on verzenio. Hoping piqray lasts for me.

[NPmary in reply to Kaylab]

Hope so for you.

[NPmary in reply to Kaydub]

So sorry, l hate hearing that.

[NPmary in reply to Kaydub]

So sad to hear that.

[LadyKatarina]

It totally depends on your cancer type, how aggressive it is, how many and how large your original tumors were, your age, so many factors. There are probably research papers tabulating this. On some FaceBook groups they often ask how long others have been living with it--and often there are ones surviving 20 or even 30 years. Since I am 75 I know I won't live for 30 more years!! Ha!

[AutumnLove in reply to LadyKatarina]

Thank you for your response!🙏🏼❤😊

[viennagirl]

Hi AutumnLove,

I have been on Ibrance and Letrozole for over two years now and I am doing very well. My scans are coming back with no progression and the scan before that showed no evidence of disease. So I feel lucky. But my Oncologist wants me to stay on the medication because she believes it is keeping the cancer at bay. But she is reducing my dose of Ibrance to 75 mg. She said my neutrophils get too low each cycle. She thinks a lower dose might make me less tired.

Over the past few years I have been very careful with diet and try to eat whole foods and have drinks that have turmeric. I do fall off the wagon from time to time but mostly I follow a good wholesome diet. I love tea and fake coffees and I also have an organic chocolate drinks almost every day. I don't eat much dairy but I do eat some of it. And I don't eat much meat but I do eat it in moderation.

However, I have started gaining weight again and that is bad and dangerous. Cancer seems to strike people who are overweight or unhealthy generally. So I decided to take a more extreme measures to help prevent my cancer from returning.

I am now as of today starting Dr. Eric Berg's cancer prevention protocol. As of today I will eat only one meal a day. He claims it prevents and cures cancer. You can watch Dr. Berg on YouTube. He outlines how and why this program called OMAD works to prevent and even cure cancer. This diet is basically one meal a day for five days and then a 48 hour fast and then once a month a 7 day fast. He knows most people cannot fast for 7 days so he suggests starting with 3 or 5 days. I giving this a try.

I also have been watching videos where other cancer specialists say that fasting for 5 days creates brand new stems cells in the body. So all this information if making me give this a try.

I think for a week or two it might be hard to do this diet but my plan is to make beautiful late afternoon or evening meals with a super delicious menu. Because I won't be worrying about creating three meals I will only have to focus on one meal and that will allow me to make it very special. I will purchase only the best cuts of meat and freshest organic vegetables.

Dr. Berg said this is a preventative diet to protect against cancer and also works for people who have cancer. He has seen stage 4 cancer completely reversed on someone faithful to this diet. Wish me well and I will think of you AutumnLove because you are so young. It is such a blow to your spirit to be ill at such a young age. But your age can also work in your favour. You likely have a stronger immune system than someone my age of 79.

Just believe that you will get well and search for ways to help yourself. It is okay to rely on doctors - I respect them - but we also have so much power within ourselves to heal. So we can join the doctors in helping ourselves heal.

I sincerely believe there is something to learn from Dr. Berg's diet plan. We all have had such a rich diet in our modern culture and it hasn't protected us so eating less is probably a good thing and it is also going to good on the budget. Yay!

Hopefully, I can stay on this plan. It is a bit daunting at the moment but I really want to get completely better and live without drugs. If you can watch Dr. Berg on You Tube he also has some additional details for supplements to take if you already have cancer. My best wishes to you AutumnLove. Hugs Marlene

[jersey-jazz in reply to viennagirl]

Dear Marlene-----Wow! Your plan is so radical, following Dr Berg's routine. I admire you. I absolutely know that I would not be able to do it. I hope that it has the results you are looking for. Please keep me posted on how it works for you. Good luck!

[PJBinMI]

I'm a long timer with denovo MBC--18 years as of 3/1! While survival stats have improved a bit during this time there are some important things to remember. And our very individual cells, body chemistry, response to treatment, etc etc do make a big difference. Nobody knows how long we have, but that was true before cancer. right now I am having memory issues and I don't remember what I set out to write. what experts I was going to quote. Bit I do remember that those survival stats always include people with rip roaring aggressive cancer, those who didn't get appropriate medical care until the cancer was very extensive (meaning seeing an onc rather than a lay person or medical person who hasn't kept up, is on the fringes, etc) or for whatever reason just cannot follow a treatment plan. In the first few months after I was diagnosed, I heard of a number of women who had lived 10, 20, even 30 years with this lousy cancer. ( the 30 year survivor attended the annual conference of the Metastatic BC Network. She was introduced to us all and was quite an inspiration.) I found a self led support group in the midsize city that I went to for treatment, and most of the woem in the group when I joined had been living with MBC for 3-8 years and most did not look at all sickly! More of us are living longer now, and bc is out in the open alot more than when I was diagnosed. There are alot more on line groups for us now than then, and those are easier to find! For me, and again it's important to remember that what works for one of us isn't going to work for all, the things I have found the most helpful are learning all I can about bc and mbc and resources, keeping my sense of humor, being open with my family and a couple of close long time friends who have made a point of asking me what they can do to help me. I don't have a big family--Husband, grown daughter, son in law, two grown step daughters, two step granddaughters and my younger brother. I allow myself to cry or hit pillows when I feel a need for physical release! I've made a point of coming to terms with my own death, and been open about that process with those close to me who are comfortable listening. One of the things I hate about the idea of dying is leaving our dog and 7 cats. My husband will take great care of them and so will our daughters. Four of them are over 13yers old and probably won't out live us by alot but it is a big unknown and I can't stand the idea that any of tthem would not end up with loving care! (better cats and dog than children or disabled spouse,I know...).

[Cureforever]

The latest update I received from the lead scientist of ErSO (below) The letter underneath is from another scientist of ErSO that leads a chem lab The third letter is from ErSO contact in the Systems Oncology that owns the ErSO license

Dear Marina:

Excuse the delay in responding. Dealing with Covid in our lab.

The energy and resilience of the MBC community is inspiring. Although I am not a consultant to Systems Oncology we remain in close contact. Systems Oncology, our laboratory and that of Professor Hergenrother are all working with passion and energy to develop the information needed to move forward to a clinical trial as quickly as possible.

Most current cancer drugs moving toward a clinical trial are either related to an already approved cancer drug, or target the same protein or process in the cancer cell as an FDA approved drug. ErSO and ErSO family members are an entirely new type of cancer drug; this means there is a good deal to do in order to assemble the information for an FDA approved clinical trial.

While we all wish we could provide a specific timeline for clinical transition, it depends on ongoing work guided by Systems Oncology and in the research laboratories.

Moving ErSO or an ErSO family member forward to the clinic remains at the center of our work.

My Best to you and the entire MBC community

David

Professor David J. Shapiro, Eugene Howe Scholar

Department of Biochemistry and Cancer Center at Illinois

314D RAL, University of Illinois

600 S. Mathews Avenue

Urbana, IL 61801-3602 USA

email: [e-mail]

Hi Marina,

Thanks so much for your note and for all your advocacy. Prof. Shapiro and I are acutely aware of the needs of MBC patients, which is why we have dedicated so much of our careers to this work – the courage of you and others living with MBC is truly inspiring to us!

Thanks also for forwarding the update from Madeline Sell, and actually, I do not view this as discouraging at all. I can tell you that Systems Oncology is doing everything they can to advance this to the clinic as fast as possible. I have been involved in the translation of 4 different anticancer compounds, so, I can tell you that when she makes those comments about the timeline, what it means is there are certain experiments that simply cannot be sped up. For example, for another anticancer compound of ours the FDA wanted data from an 84-day toxicology study – so, these experiments simply take time, often months. With these regulations the FDA tries to balance the acute needs of patients with ensuring safety for any new drug candidate.

I hope this helps; please know that Prof. Shapiro and I are doing all we can and we both remain very optimistic! Thanks for making contact and please feel free to reach out to me periodically and best regards,

Paul

**********************************************************

Professor Paul J. Hergenrother

Kenneth L. Rinehart Endowed Chair in Natural Products Chemistry

Department of Chemistry

University of Illinois

261 Roger Adams Lab Box 36-5

600 S. Mathews

Urbana, IL 61801

e-mail: [e-mail]

phone # : [phone]

Latest update from Madeline Sell (Systems Oncology)

Dear Marina,

Thank you for reaching out on behalf of so many patients. I am acting as the point of contact for questions regarding this program. I would like to reassure you that we are proceeding with urgency and spending considerable time and resources on advancing this program. We understand there is a great deal of need in the community and are actively working to fulfill that need. While we are proceeding as quickly as possible, the timeline for advancement is dictated not by us but by the results of scientific experiments. I apologize that we do not have more encouraging news at this moment. I will continue to keep your group updated with any relevant advancements.

Sincerely,

Madeline Sell

[DDIL1 in reply to Cureforever]

Thank you for advocating, hopefully more help is on the way sooner than later.

[Cureforever in reply to DDIL1]

Hi,Hope is a good thing. I find these letters encouraging. We need cure!

[DDIL1 in reply to Cureforever]

This helps to keep our Hope going!

[Cureforever in reply to DDIL1]

I try to get updates about ErSo periodically.

[Cureforever]

Dear AutumnLovePlease read an update about ErSO I posted in this thread.

[AutumnLove in reply to Cureforever]

Yep? Done! Thank you so much!😊❤🙏🏼

[Cureforever in reply to AutumnLove]

Hi, You are very welcome. I find these letters encouraging. Do you?

[AutumnLove in reply to Cureforever]

Yes. I truly do! Ty for working ao tirelessly..Godbless you!🙏🏼❤😊

[Cureforever in reply to AutumnLove]

Thank you very much. I hope we will be cured

[Pbsoup in reply to Cureforever]

Marina thanks so much for your tireless advocacy. It’s a gift to all of us.

it is also likely motivating and inspiring for the researchers as well, reminding them that there are real people who will benefit from their work. I am sure that developing new drugs is a bit of a slog and has many discouraging moments.

It was interesting to read how most new cancer drugs are similar or at least related to what’s already out there. I imagine that’s due to a profit motive vs really helping patients. I also wonder if the novelty of this drug, and the considerable time it will take to develop, is a reason why Bayer bailed.

I am cynical about the drug companies, it’s hard not to be, But reading these thoughtful responses from three separate people restores hope. Not only in the possibility of a cure, but also that there are good, serious dedicated people motivated by more than greed fighting in our corner.

I love that Mister Rogers line about how to stay calm in a crisis: “look for the helpers”

❤️

[Cureforever in reply to Pbsoup]

Hi Pbsoup,Thank you for your comments and nice words. I wrote a heartbreaking letter to the CEO of Systems Oncology and then to the researchers. When I published my letter to the CEO on ErSO activism group site, one lady said that only a frozen heart can be indifferent. The CEO forwarded it to the ErSO contact. Madeline Still.

I hope that ErSO will be successful and will receive a fast track.

I have anxiety every day. Thinking about all these new drugs and especially hoping for ErSO gives me strength. “MBC trials and innovative treatments “ is a good group I am a member of. They publish many promising drugs and treatments.

How are you doing? I believe you were on Piqray.

Best,

Marina

[Pbsoup in reply to Cureforever]

I am on Xeloda. So far so good, other than the annoying hand/foot issues. No sandals for me this summer!

[Cureforever in reply to Pbsoup]

I am on Xeloda as well but the lower dose. 1500 mg, one pill in the morning, two at night. Hope it’s working. Good luck.

[Cureforever]

Hope ErSo will have curative effects on people as well

[hurricaneheather]

i have been on the first line of treatment since August 2015; the body has been NEAD since March 2016. i want to live many more years! i believe i will reach the 10 year cancerversary, and still be on the first line of treatment. attitude! i choose to think this way and will accept what is presented to me. my priority and focus is the health and wellness of this mind-body.

[AutumnLove in reply to hurricaneheather]

I love you outlook and comments HH!❤ Your name so suits you!!!😊❤