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ErSO drug that might cure a metastatic breast cancer is undergoing preclinical testing

Cureforever profile image
55 Replies

Hi wonderful people,

First of all I would like to post an email I received from the Director of research center in NCI(National Cancer Institute)

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

It gave me hope Many people are saying that it takes a long time for any END (experimental new drug ). to be approved I agree but I also believe that it changed a little bit now The fact that ErSO went straight from the lab to a big pharma Bayer gives hope One of our members contacted the researchers and they said that we may expect more news about human trials at the end of the year I got the same information from Bayer Let’s hope and heal together!!! Please exchange the information if you have some

🙏🙏🙏

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Cureforever
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55 Replies

It would be a wonderful gift if it could happen before it's too late for me and all of us here with MBC!!!😁♥️👍🙏🙏🙏🙏🙏

Cureforever profile image
Cureforever in reply to

Let’s hope it will!!! I tried to write heartbreaking emails to Bayer trying to convince them that for us every day matters. I found out that my contact there was a medical oncologist before he became a Bayer executive and that he is quite understanding and supportive. Potential profit is off course a big drive for them. Lets keep our fingers crossed!!!

in reply to Cureforever

Everything is crossed!!🙏🤣😂

This response was received a few weeks ago by someone on the "Healing Cancer Study Group" on Facebook.

"I received this response to my email to the principal author on the paper:

We appreciate your interest in our recently published work on the breast cancer drug, ErSO. Due to work on a proposal to secure funds to continue and extend our work, with a just expired deadline, I regret that I have been unable to focus on responding to email. With the large number of emails from breast cancer patients, family, friends and others, I deeply regret that I am unable to reply to each your messages individually. I hope this will be helpful.

My colleagues and I are laboratory researchers, not clinicians who treat patients. Therefore, we cannot comment on the appropriate treatment strategy for individual breast cancer patients.

The timing of the clinical trial is entirely up to the pharmaceutical company Bayer, which has licensed ErSO. It does not seem likely to start in the next few months. Because the clinical trial has not yet been organized, there is no proposed location and, to my knowledge, it is not currently possible for you to sign up for the clinical trial of ErSO.

I regret that I do not have more information to give you. There is no specific Bayer contact person for the clinical trial. Rose Talarico, E-Mail: rose.talarico@bayer.com is a potential contact person at Bayer. The time required for cancer drugs, such as ErSO to go from the start of a clinical trial to full FDA approval depends on how well they work, side effects and the scale of the studies. For other anticancer drugs, it has been anywhere from just over 2 years to a decade. I know from personal experience how difficult and stressful each of your situations is and what this timeline means for many of you.

Our work is not funded by Bayer and is completely independent. What we can do by the work of our team is to demonstrate the remarkable effectiveness of ErSO and advance our knowledge of how it works. By the powerful work described in our paper in Science Translational Medicine we can encourage Bayer to move as rapidly as possible to starting a clinical trial.

What I can promise you is that we are doing everything we possibly can to advance this exceptionally promising preclinical breast cancer drug.

My best to you

David Shapiro

Professor David J. Shapiro, Eugene Howe Scholar

Department of Biochemistry and Cancer Center at Illinois

"

in reply to

Here's the study synopsis from Science Translational magazine

"scholar.google.com/scholar?...

Cureforever profile image
Cureforever in reply to

Thank you I read it in July. Then many articles came out around July and August as a response to this article. But from that time nothing was published with the exception of the video Danny gossy29 provided us with in his post. It looks very promising. Let’s hope for cure.

viennagirl profile image
viennagirl in reply to

Thank you SpiffyCJ. I copied the article for my files.

Cureforever profile image
Cureforever in reply to

Hi, I received this email from Professor Shapiro back in August. He replies to everyone with the generated email. The contact he provides people with has not responded to a single person. Another member of the same group responded to our member Danny. Gossy29. You may find it in his replies to me. After I got this generated email from Dr.Shapiro, I contacted the NCI that funded this research and got the same reply that now it’s up to the Bayer of how to proceed. 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. Good luck to all of us!!!

I also believe in ErSO and I hope that trials will be forthcoming.

I also hope I will be able, at the appropriate time, to inundate the FDA with letters urging them to give accelerated approval to Bayer, just like they did for the Pfizer & Moderna vaccines 🙏🙏

in reply to

*emergency approval

Cureforever profile image
Cureforever in reply to

Thank you so much. This will be great. Bayer told me that they will be considering this option.

in reply to Cureforever

🙏🙏🙏

MyMiracle13 profile image
MyMiracle13

Thank you Lord! I am also a member of Team Inspire and there is a group there pushing for early clinical trials of ErSO.

Cureforever profile image
Cureforever in reply to MyMiracle13

Hi. I was the one who posted info on ErSO on inspire and urged people to contact Bayer. I got many followers there But then this side banned my accounts for asking people to contact Bayer. I was giving people hope. They called it “soliciting “. I was ver upset and wrote them a long email explaining that am in the same boat with everyone but they never replied to me. People there were asking me for more information because I was lucky to get an email from Bayer. Thus, I opened an account here and asked people who are members of inspire to tell people what happened and to keep them posted I keep my fingers crossed and hope for fast clinical trials if this exceptional and revolutionary drug. Good luck to all of us!!!

8576 profile image
8576 in reply to Cureforever

So sorry to hear about this. We all want to know of news that will help in our struggle against Cancer. I suppose they only want you to give information and not encourage people to take certain actions.

Cheers, June S.

Cureforever profile image
Cureforever in reply to 8576

Thank you. It’s so upsetting but the administration of this forum is much smarter and understanding

BallerinaMel profile image
BallerinaMel

Is there an email address we can send tto urge the FDA to tell Bayer to begin trials as soon as possible?

Cureforever profile image
Cureforever in reply to BallerinaMel

Hi. I personally never contacted the FDA but I believe some people did. Best

EZSZ profile image
EZSZ

Hi, I am so grateful to read your post. While currently there are many meds available, nothing seems as promising as ErSO. If the publication is correct, all we have to do is hang on long enough until ErSO saves us. I am very grateful for the news, thanks for sharing.

Cureforever profile image
Cureforever in reply to EZSZ

Hi. This is our goal. I mean to hang on until hopefully the cure comes our way. I try to give people hope. I have faith in ErSO Good luck.

Half-Full profile image
Half-Full

Good info, I would greatly appreciate it if any new info regarding ErSO is posted here. I don’t think there’s ever been a drug that has performed so well in animal trials. If they can get human trials going by the end of the year that would be phenomenal.

Cureforever profile image
Cureforever in reply to Half-Full

The latest bingo from pharma 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. I have asked the team to inform me as soon as possible so that I can inform you.

Good luck to all of us!!!

viennagirl profile image
viennagirl in reply to Cureforever

Thank you so much for watching out for all of us.

I just sent an email to Rose at Bayer and asked her to contact me with information about this drug. So maybe if we all start hounding Bayer we will get results faster than expected. If Bayer sits on this too long we need to get our concerns out to the media. Because this illness is too serious to just let us all fade away. We need help in recovering our health. Hugs Marlene

Cureforever profile image
Cureforever in reply to viennagirl

Hi. You are welcome. Rose has not answered anyone. You should email the ceo of Bayer and fill out the inquiry form at the contact page. Ceo

werner.baumann@bayer.com

Your email will get rerouted to some executive. You will receive the generated email first. Then you may start communicating with that person and will get personalized answers to your questions. You may see the latest update I posted. Please share information if you get some. Good luck to all of us!!! Hope it will be a cure or a very effective treatment.

in reply to viennagirl

I sent her two emails but received no response.I'm sure that once they have funds, location and a small trial group of cancer patients to start trials, we'll hear more. We're still in phase 0 of 4 phases.

My hope is also end of the year start🙏🙏🙏

Cureforever profile image
Cureforever in reply to

Hi. Thank you for your inquiry Rose has not answered anyone. You should email the ceo of Bayer and fill out the inquiry form at the contact page. Ceo

werner.baumann@bayer.com

Your email will get rerouted to some executive. You will receive the generated email first. Then you may start communicating with that person and will get personalized answers to your questions. You may see the latest update I posted. Please share information if you get some. Good luck to all of us!!! Hope it will be a cure or a very effective treatment.

Cureforever profile image
Cureforever in reply to Half-Full

I meant the latest information

viennagirl profile image
viennagirl

Thank you so much for this information. I sure hope they fast track this drug. Hugs Marlene

Cureforever profile image
Cureforever in reply to viennagirl

Let’s keep our fingers crossed!!!

gossy29 profile image
gossy29

There is a change.org petition running here, please sign and share :

change.org/p/bayer-possible...

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny. Is everything ok with you? I sent you so many replies but haven’t heard back from you. I hope you are doing fine.. I would suggest you to post this petition as a separate post with the title r.g Let’s sign the petition about ErSO. ErSO definitely has to be in the title. It would come up when people search ErSO. Thank you

Best regards,

Marina

gossy29 profile image
gossy29 in reply to Cureforever

Hi Marina, Yes I'm sorry I am good thanks for asking!! I dont think I saw those replies I find this forum a little hard to navigate sometimes. I got scan results yesterday which showed no progression, I have two small bone mets (Femur and scapula) that have recently had SABR radiation so my Onc even thinks next scans they will be smaller (Or hopefully NED). I start Xeloda next week and I believe this will buy me some time for other treatments to progress through trials and become available. Since I have been researching MBC, I have read the word incurable alot, but at 45 and with two young kids I am still very determined to get out of this illness alive. I hope you are well and I will post any research updates I find :)Regards

Danny

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,Thank you for replying. I am glad you are fine. You are very young and should have many many years ahead of you. I hope we all will if the cure is found Unfortunately my disease has progressed to new bones and liver. I do not want to scare you but it started from two spots 2years ago . I was not given radiation but was on ibrance and exemestane for a year. Then it started progressing. I am on Xeloda now, just started. It’s my fifth line of treatment. I was on tamoxifen for three months before that but it did not control it. I hope Xeloda will help until these new drugs come out. I have faith in ErSO.

I noticed that you posted on inspire the answer from Bayer a month ago. I got exactly the same answer as a first email. It came from Vice President of medical affairs USA. Then I started communicating with him and emails got more personalized. Did you communicate with that person afterwards? Are you planning to post a petition as a separate post? I can do it if you don’t mind.

Good luck to you

Marina

gossy29 profile image
gossy29 in reply to Cureforever

Hi Marina, Thats fine if you want to post it, no problem!! I didnt send any further follow up emails to Bayer, the reply just came from a generic account not from an actual person. It was from "Customer service" or something like that. I like the comms from UIUC Scientists and something that you posted that said there will likely be some news this year.......there is not too much of this year left!!Regards

Danny

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny

Thank you for your reply. I will post the petition.

I did get the info from Bayer that more information will be coming at the end of the year.

I hope that such a promising drug can’t fail. They are probably using their own testing to double check everything. I was so depressed after my scans started showing the progression. Then when I started researching ErSO and consulting with the pharmacology professor that develops mbc drugs. I became better. I hope it will kill all mets. It’s time to find the cure. It was found for HIV. Why not breast cancer.

One lady also posted the following info

From the article…The success of Faslodex has prompted several biopharma companies to develop next-generation selective ER downregulators (SERDs). They include Sanofi, which is moving its drug, amcenestrant, into a phase 3 trial against tamoxifen after showing promising early results in combination with Pfizer’s CDK4/6 inhibitor Ibrance.

Roche is pairing its SERD drug, giredestrant, with Ibrance in the phase 3 persevERA trial. And Radius Health is working with Menarini on an oral SERD dubbed elacestrant. It expects phase 3 data from the EMERALD trial later this year

I was on Ibrance and Faslofex already and it couldn’t control the disease. But my oncologist said that if Xeloda stops the progression I may go back on it. I hope it will until we hear more about the ErSO trials.

Please inform me if you find some stuff

Best,

Marina

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,I recently sent you the message that I could not post the petition as a separate post. I did but then deleted it because it was not interactive. Thus, people would not be able to click on it like I clicked on the link that was in your message. Would you please post it with the ErSO in the title of the post. Eg Lets sign the petition about ErSO a possible cure for metastatic breast cancer or something like that. Thank you very much. Best,

Marina

gossy29 profile image
gossy29 in reply to Cureforever

Hi Marina,I have posted as a separate topic, and the partition continues to grow.

Will keep in touch

regards

Danny

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,Thank you so much!!! I did notice that it continues to grow. Let’s keep our fingers crossed and hope for cure.

Will keep in touch.

Best,

Marina

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,

I hope you are fine. Did you hear more news about ErSO and/or other promising drugs/treatments. I have a lot of anxiety.

I am on Xeloda now but when I think about a real chemo I have chills. I just hope ErSO will come in time to avoid it. I receive daily news from this forum. Today I received the my times article (below). It said that 3 more drugs were approved this year, 12 are in trials and hundreds in development. Do you know what they are talking about. What are those drugs?

I hope for ErSO and do not know any others. I know that you are very good in research. Please share any new information. Thank you very much The petition is growing. Thanks God.

Best,

Marina

healthunlocked.com/api/redi...

gossy29 profile image
gossy29 in reply to Cureforever

Hi Marina,I'm sorry to hear about your anxiety, it is such a horrible weight to carry around I can certainly empathise with you. Its a cruel, horrible and unfair disease. I don't really have any more info, but I did read that article from the New York Times. Its very encouraging that so many smart people are working around the clock to work on cures and new treatments. I have alerts setup for new ErSO news on a number of social media platforms as well as in google so I hope to get any news as soon as it comes out. I have also written to my local member of Parliament, who is also the federal health Minister in Australia, to see if theres is anything he can do. I guess at the end of the day though the only thing i keep falling back on is my faith, I really believe cures are out there waiting to be found, and if its God's wish for me it will happen in time.

All the best

Danny

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,Thank you so much for your support and encouragement. I agree with every word you were saying. You are such an optimist. Thank you for watching out for ErSO. Hope we will hear some positive news soon. We can’t win without hope.

Good luck!!!

Keep in touch.

Best,

Marina

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny, Thank you so much for this info. I couldn’t reply to your private message. I have never sent or received private messages and am not sure how to do it.

I will be looking forward to look at this group

Best,

Marina

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,Thank you for inviting me to the Facebook group. That group is very active. You sent it to me as a private message but I think it’s a good idea to post here the information about the group. Here we just exchange information while there they develop the plans of action. Can you post it here as a separate post with the ERSO in the title? Thank you very much

Best,

Marina

Cureforever profile image
Cureforever in reply to Cureforever

Hi again. You may not open that link

I copied the article for you

Cancer Without Chemotherapy: ‘A Totally Different World’ - The New York Times

hopenowandtomorrow profile image

hopenowandtomorrow

21 hours ago•3 Replies

Hi fellow MBC’ers: Very interesting & hopeful article!

nytimes.com/2021/09/27/heal...

Cancer Without Chemotherapy: ‘A Totally Different World’

A growing number of cancer patients, especially those with breast and lung cancers, are being spared the dreaded treatment in favor of other options.

Published Sept. 27, 2021Updated Sept. 28, 2021

Dr. Seema Doshi, a dermatologist near Boston, thought it was a foregone conclusion that she would have to undergo chemotherapy when a cancerous lump was found in her breast in 2019.

Dr. Seema Doshi, a dermatologist near Boston, thought it was a foregone conclusion that she would have to undergo chemotherapy when a cancerous lump was found in her breast in 2019.Lauren Justice for The New York Times

Dr. Seema Doshi was shocked and terrified when she found a lump in her breast that was eventually confirmed to be cancerous.

“That rocked my world,” said Dr. Doshi, a dermatologist in private practice in the Boston suburb of Franklin who was 46 at the time of her diagnosis. “I thought, ‘That’s it. I will have to do chemotherapy.’”

She was wrong.

Dr. Doshi was the beneficiary of a quiet revolution in breast cancer treatment, a slow chipping away at the number of people for whom chemotherapy is recommended. Chemotherapy for decades was considered “the rule, the dogma,” for treating breast cancer and other cancers, said Dr. Gabriel Hortobagyi, a breast cancer specialist at MD Anderson Cancer Center in Houston. But data from a variety of sources offers some confirmation of what many oncologists say anecdotally — the method is on the wane for many cancer patients.

Genetic tests can now reveal whether chemotherapy would be beneficial. For many there are better options with an ever-expanding array of drugs, including estrogen blockers and drugs that destroy cancers by attacking specific proteins on the surface of tumors. And there is a growing willingness among oncologists to scale back unhelpful treatments.

The result spares thousands each year from the dreaded chemotherapy treatment, with its accompanying hair loss, nausea, fatigue, and potential to cause permanent damage to the heart and to nerves in the hands and feet.

The diminution of chemotherapy treatment is happening for some other cancers, too, including lung cancer, the most common cause of cancer deaths among men and women in the United States, killing about 132,000 Americans each year. Breast cancer is the second leading cause of cancer deaths among women, killing 43,000.

Still, the opportunity to avoid chemotherapy is not evenly distributed, and is often dependent on where the person is treated and by whom.

But for some patients who are lucky enough to visit certain cancer treatment centers, the course of therapy has changed. Now, even when chemotherapy is indicated, doctors often give fewer drugs for less time.

“It’s a totally different world,” said Dr. Lisa Carey, a breast cancer specialist at the University of North Carolina.

Dr. Robert Vonderheide, a lung cancer specialist who heads the University of Pennsylvania’s Abramson Cancer Center, remembers his early days on the job, about 20 years ago.

“The big discussion was, Do you give patients two different types of chemotherapy or three?” he said. There was even a clinical trial to see whether four types of chemotherapy would be better.

“Now we are walking in to see even patients with advanced lung cancer and telling them, ‘No chemo,’” Dr. Vonderheide said.

Breaking down the dogma.

Preparing a dose of the targeted drug Herceptin in Bethesda, Md., in 2016.

Preparing a dose of the targeted drug Herceptin in Bethesda, Md., in 2016.Matt Roth for The New York Times

The breast cancer treatment guidelines issued by the National Cancer Institute 30 years ago were harsh: chemotherapy for about 95 percent of patients with breast cancer.

The change began 15 years ago, when the first targeted drug for breast cancer, Herceptin, was approved as an initial treatment for about 30 percent of patients who have a particular protein on their tumor surface. It was given with chemotherapy and reduced the chance of a recurrence by half and the risk of dying from breast cancer by a third, “almost regardless of how much and what type of chemotherapy was used,” Dr. Hortobagyi said.

In a few studies, Herceptin and another targeted drug were even given without chemotherapy, and provided substantial benefit, he added.

That, Dr. Hortobagyi said, “started to break the dogma” that chemotherapy was essential.

But changing cancer therapies was not easy.

“It is very scary,” to give fewer drugs, Dr. Hortobagyi said.

“It is so much easier to pile on treatment on top of treatment,” he continued, “with the promise that ‘if we add this it might improve your outcome.’”

But as years went by, more and more oncologists came around, encouraged by new research and new drugs.

The change in chemotherapy use is reflected in a variety of data collected over the years. A study of nearly 3,000 women treated from 2013 to 2015 found that in those years, chemotherapy use in early-stage breast cancer declined to 14 percent, from 26 percent. For those with evidence of cancer in their lymph nodes, chemotherapy was used in 64 percent of patients, down from 81 percent.

More recent data, compiled by Dr. Jeanne Mandelblatt, a professor of medicine and oncology at Georgetown, and her colleagues, but not yet published, included 572 women who were 60 or older and enrolled in a federal study at 13 medical centers. Overall, 35 percent of older women received chemotherapy in 2012. That number fell to 19 percent by the end of 2019.

Cheaper and faster genetic sequencing has played an important role in this change. The technology made it easier for doctors to test tumors to see if they would respond to targeted drugs. Genetic tests that looked at arrays of proteins on cancer cells accurately predicted who would benefit from chemotherapy and who would not.

There are now at least 14 new targeted breast cancer drugs on the market — three were approved just last year — with dozens more in clinical trials and hundreds in initial development.

Some patients have reaped benefits beyond avoiding chemotherapy. The median survival for women with metastatic breast cancer who are eligible for Herceptin went from 20 months in the early 1990s, to about 57 months now, with further improvements expected as new drugs become available. For women with tumors that are fed by estrogen, the median survival increased from about 24 months in the 1970s to almost 64 months today.

Now some are in remission 10 or even 15 years after their initial treatment, Dr. Hortobagyi said.

“At breast cancer meetings, a light bulb went off. ‘Hey, maybe we are curing these patients,’” Dr. Hortobagyi said.

‘Some cases keep me up at night.’

Dr. Doshi with her twin sons Liam, right, and Grayson. Though she dreaded chemotherapy, she also worried about skipping it altogether.Lauren Justice for The New York Times

Dr. Doshi’s oncologist, Dr. Eric Winer of the Dana-Farber Cancer Institute, gave her good news: A genetic test of her tumor indicated she would not get any significant benefit from chemotherapy. Hormonal therapy to deprive her cancer of the estrogen that fed it would suffice.

But as much as Dr. Doshi dreaded chemotherapy, she worried about forgoing it. What if her cancer recurred? Would chemotherapy, awful as it is, improve her outcome?

She got a second opinion.

The doctor she consulted advised a “very aggressive” treatment, Dr. Doshi said — a full lymph node dissection followed by chemotherapy.

She had multiple conversations with Dr. Winer, who ended up discussing her case with four other specialists, all of whom recommended against chemotherapy.

Finally, Dr. Doshi said, “my husband said I should just pick a horse and run with it.”

She trusted Dr. Winer.

Her struggles mirror what oncologists themselves go through. It can take courage to back off from chemotherapy.

One of the most difficult situations, Dr. Winer said, is when a patient has far more advanced disease than Dr. Doshi did — hers had spread to three lymph nodes but no further — and is not a candidate for one of the targeted treatments. If such a patient has already had several types of chemotherapy, more is unlikely to help. That means there is no treatment.

It falls to Dr. Winer to tell the patient the devastating news.

Dr. Susan Domchek, a breast cancer specialist at the University of Pennsylvania, can relate to those struggles.

“It is the nature of being an oncologist to be perpetually worried that you are either overtreating or undertreating a patient,” she said.

“Some cases keep me up at night,” she said, “specifically the cases where the risks and benefits of chemotherapy are close, yet the stakes still feel so high.”

Survival rates are tripling for lung patients.

Chemotherapy as the sole initial treatment for lung cancer has become less common.Gretchen Ertl for The New York Times

When Dr. Roy Herbst of Yale started in oncology about 25 years ago, nearly every lung cancer patient with advanced disease got chemotherapy.

With chemotherapy, he said, “patients would be sure to have one thing: side effects.” Yet despite treatment, most tumors continued to grow and spread. Less than half his patients would be alive a year later. The five-year survival rate was just 5 to 10 percent.

Those dismal statistics barely budged until 2010, when targeted therapies began to emerge. There are now nine such drugs for lung cancer patients, three of which were approved since May of this year About a quarter of lung cancer patients can be treated with these drugs alone, and more than half who began treatment with a targeted drug five years ago are still alive. The five-year survival rate for patients with advanced lung cancer is now approaching 30 percent.

But the drugs eventually stop working for most, said Dr. Bruce Johnson, a lung cancer specialist at Dana-Farber. At that point many start on chemotherapy, the only option left.

Another type of lung cancer treatment was developed about five years ago — immunotherapy, which uses drugs to help the immune system attack cancer. Two-thirds of patients from an unpublished study at Dana-Farber were not eligible for targeted therapies but half of them were eligible for immunotherapy alone, and others get it along with chemotherapy.

Immunotherapy is given for two years. With it, life expectancy has almost doubled, said Dr. Charu Aggarwal, a lung cancer specialist at the University of Pennsylvania.

Now, said Dr. David Jackman of Dana-Farber, chemotherapy as the sole initial treatment for lung cancer, is shrinking, at least at that cancer treatment center, which is at the forefront of research. When he examined data from his medical center he found that, since 2019, only about 12 percent of patients at Dana-Farber got chemotherapy alone, Dr. Jackman said. Another 21 percent had a targeted therapy as their initial treatment, and among the remaining patients, 85 percent received immunotherapy alone or with chemotherapy.

In contrast, in 2015, only 39 out of 239 patients received a targeted therapy as their initial treatment. The rest got chemotherapy.

Dr. Aggarwal said she was starting to witness something surprising — some who had received immunotherapy are still alive, doing well, and have no sign of cancer five years or more after their initial treatment.

She said: “I started out saying to patients, ‘I will treat you with palliative intent. This is not curative.’”

Now some of those same patients are sitting in her clinic wondering if their disease is gone for good.

‘It’s almost surreal.’

Mark Catlin has been taking a targeted therapy for his lung cancer — two pills a day, no side effects — for seven years. He bikes or runs miles every day.Narayan Mahon for The New York Times

Chong H. Hammond’s symptoms were ambiguous — a loss of appetite and her weight had dropped to 92 pounds.

“I did not want to look at myself in the mirror,” she said.

It took from October 2020 until this March before doctors figured it out. She had metastatic lung cancer.

Then Dr. Timothy Burns, a lung cancer specialist at the University of Pittsburgh, discovered that Mrs. Hammond, who is 71 and lives in Gibsonia, Pa., had a tumor with two unusual mutations.

Although a drug for patients with Mrs. Hammond’s mutations has not been tested, Dr. Burns is an investigator in a clinical trial involving patients like her.

He offered her the drug osimertinib, which is given as a pill. This allowed her to avoid chemotherapy.

Ten days later she began feeling better and started eating again. She had energy to take walks. She was no longer out of breath.

Dr. Burns said her lung tumors are mostly gone and tumors elsewhere have shrunk.

If Mrs. Hammond had gotten chemotherapy, her life expectancy would be a year or a little more, Dr. Burns said. Now, with the drug, it is 38.6 months.

Dr. Burns is amazed by how lung cancer treatment has changed.

“It’s been remarkable,” he said. “We still quote the one-year survival but now we are talking about survival for two, three, four or even five years. I even have patients on the first targeted drugs that are on them for six or even seven years”

Mark Catlin, who is being treated at Dana-Farber, is one of those patients.

On March 8, 2014, Mr. Catlin, who has never smoked, noticed a baseball-size lump under his arm. “The doctors told me to hope for anything but lung,” he said.

But lung it was. It had already spread under his arm and elsewhere.

Oncologists in Appleton, Wis., where he lives, wanted to start chemotherapy.

“I was not a fan,” Mr. Catlin said. His son, who lives in the Boston area, suggested he go to Dana-Farber.

There, he was told he could take a targeted therapy but that it would most likely stop working after a couple of years. He is 70 now, and still taking the therapy seven years later — two pills a day, with no side effects.

He rides a bike 15 to 25 miles every day or runs four to five miles.

His drug, crizotinib, made by Pfizer, has a list price of $20,000 a month. Mr. Catlin’s co-payment is $1,000 a month.

But, he says, “it’s keeping me alive.”

“It’s almost surreal,” Mr. Catlin said.

❤️🙏❤️

Written by

hopenowandtomorrow profile image

hopenowandtomorrow

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,How are you doing on Xeloda? Why your doctor changed your treatment if you did well on it? I am on Xeloda now as well but it’s my fifth line of treatment over two years. I hope it will work well I BBC am very tired and my bloodwork is messed up.

Hope ErSO will come out and cure all of us.

🤞🙏🤞🙏

gossy29 profile image
gossy29 in reply to Cureforever

Hi Marina,I have only had approx 2 weeks on Xeloda but i feel fine, I haven't noticed any side effects which is great. Previously I was on tamoxifen after early stage treatment, but as soon as bone mets were found my Onc wanted me to change. A biospy showed only rather low ER expression (25%) so she said we could try other hormone therapy but she thought xeloda was best. I trust her she is very knowledgeable. How are you feeling on Xeloda?

Regards

Danny

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny, Thank you for reaching out to me.

Xeloda is my fifth line of treatment over two years. It’s very upsetting. I was on tamoxifen before Xeloda and got progression to many new bones and liver. I have fatigue but may tolerate it. The doctor lowed the dose to 1500 because of my elevated liver enzymes. It’s very toxic. I hope it will work. How is your bloodwork?

I hope that finally the ErSO comes out and we all would not have to suffer. I read that It needs very little er. Thus, yours will work.

Best,

Marina

gossy29 profile image
gossy29 in reply to Cureforever

Thanks Marina, yes I read the same about low ER, in fact I read that it may work in some tumors that have traditionally been considered triple negative! I have my first blood test next week so I'm not sure yet. I'm surprised how well I feel though.I'm sure it will work for you.

All the best Marina

Regards

Danny

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,I am glad that you feel fine. I hope I will get adjusted to this medication and the most important it will help. Keep me posted about your bloodwork. I have mine the following week.

I can’t wait until we get more info about ErSO.

Best,

Marina

in reply to gossy29

Signed!❤️

Cureforever profile image
Cureforever in reply to gossy29

Hi Danny,I could not post an interactive link to petition I copied yours but it did not work. I posted but then deleted the post because when I clicked on the link I couldn’t open it.

Can you just click on write post the title. Such as “Let’s sign the petition about ErSO drug that might be a cure for metastatic breast cancer “ or anything like that. It should have ErSO in the title.

Then post the body like you have it here

“There is a change.org petition running here, please sign and share :”

in your reply and the link to the petition

As I said I could not post the link. It was not working when I copied it from your reply.

Thank you so much.

Best,

Marina

tec3 profile image
tec3 in reply to gossy29

Thanks for sharing this! I want to be around for all three of my children but especially my 20 month old. Hopeful!

Cureforever profile image
Cureforever in reply to tec3

Hi. You are very welcome. I posted lots of stuff on ErSO on this forum as well. Just search for ErSO. You will definitely be around!!! Hopefully it will cure all of us. We can’t win without hope!!!Best,

Marina

Likes profile image
Likes

Thanks so much for this news! It really helps to have hope!! Susie

Cureforever profile image
Cureforever in reply to Likes

Hi Susie,It does. I live with this hope since I heard and read about ErSO. I hope it will cure all of us!!!

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