Onward

For my favorite Mountain Girl

Oh dear, say it ain’t so—

You mean your doctor doesn’t know—

HERCEPTIN was approved by FDA 7 years ago?

I know how busy you are, but seems you as a caregiver are going to have to play the role of researcher, counselor, intercessor, nurse and arbiter for the needs of your husband.  At times you’re going to have to “run interference” and this is one of those times.  You simply cannot gamble with the life of your husband because his doctor doesn’t know as much as he should!

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Will answer two of your questions here: 

1.      TIRED IS NORMAL.  It’s not just from not eating, it is from the cancer and the chemotherapy itself.  And chemo is often cumulative in its effects.  The first treatment may seem like a “piece of cake.”  But wait and see how successive treatments affect him. Presently I am not on chemo, but I’m very tired and really have very little appetite.  I discipline myself to eat at regular times because I know I should, but even then not in large quantities.  I am gradually losing weight.

2.      NOT having an appetite is Normal for cancer patients, especially during chemotherapy.  It’s a “double whammy!”  Your husband is going to need all the protein foods he can eat as well as hydration in order not to feel exhausted.  I haven’t spoken to a cancer patient yet that hasn’t told me how tired they are.  I’M TIRED ALL THE TIME!  But I push myself to do as much as I can given my Stage IV diagnosis.  Be careful that coaxing and begging doesn’t come across as “nagging!”  After all, ONLY the patient knows how he/she feels.  It can’t exactly be put into words.  That is precisely why the J-tube is so necessary.  Also chemo can "change tastebuds" and things don't always taste like they once did.  My husband had a sudden craving for "vinegary" tasting foods, and he often said that things "tasted" burnt!  Now being the good cook that I am, I wasn't offended, because I rarely "burn" anything.

He has to build up some strength to withstand the critical-but-necessary chemo treatments, and to undergo the hoped-for surgery.  Given the current “batting average” of your doctor, I hope he doesn’t say that surgery won’t take place for several months after the chemo treatments.  More about that later. 

It is good that you brought up the subject of a J-tube for nutrition and a Medi-port for the many infusions that your husband will have over a prolonged period of time.  And now, your doctor is INCORRECT.  FDA approved the use of Herceptin for Esophageal Cancer 7 years ago!  See references below from the National Institutes of Health.  I suggest you print this out, give it to your doctor?  INSIST on Herceptin for your husband.  If the doctor doesn’t listen to you, MOVE ON!  That’s precisely why insurance companies will approve SECOND opinions!  See the article about SECOND opinions from Mayo Clinic’s report that came out in April.  Only 12% of those patients who came to them in Rochester, MN were correct.  Some were altogether wrong, and others had to be “tweaked” for maximum benefit to the patient.

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Now on to some womanly chitchat about Thanksgiving that has nothing to do with cancer.  All you have to do is mention grandchild and we’re both on the same wave length yet again.  We have such lofty goals for them, and we have a special role to play that the natural parents will never experience until they have their own grandchildren.  Our grandchildren are so young—so innocent and there is so much we would like to protect them from.  But alas, we can’t be like the Mother Goose rhyme, “Peter, Peter, Pumpkin Eater—Had a wife and couldn’t keep her—He put her in a pumpkin shell—and there he kept her very well!”  The Internet is a wonderful thing but at the same time exposes little young impressionable children to an adult world far too soon.  Alas there are no “pumpkin shell places” where they can be kept safe in their most fragile years.  All the more reason, we should keep in touch as often as possible, and let them know they’re so special. 

So glad that you were able to have your family together for Thanksgiving.  These are the times for making special foods and special memories.  Though tired, I still cooked for two days and made the usual Turkey, dressing, giblet gravy, mashed potatoes, macaroni & cheese with lots of buttered bread crumbs on top, fried corn cooked in bacon drippings, broccoli seasoned with butter, devilled eggs, homemade rolls, and pumpkin pie.  It was all made from scratch except I didn’t raise the turkey this year, although we have had turkeys and chickens in the past—that is until the “city” encroached upon us and now we can’t have the critters we once enjoyed. 

When we bought the property in 1960, it was rural.  When my children were little we also had a couple of horses as well, and all that was next to us was a cow pasture.  No—we didn’t own a cow, but that was part of my life growing up.  We lived in the country and my parents had a cow, as well as horses for work, chickens and pigs.  I do know how to milk a cow, and I used to help my mother churn the milk to make buttermilk.  And we all know that after the rich cream is churned, what is left is known as butter milk, don’t we?    So I could well sign my name “Mountain girl” as well.  I’ve had the best of both worlds!

I do know how to “pluck a chicken and cut it up”, but these days we just buy one from the store!  However, the pumpkin pie was fresh from a pumpkin that I cut up and processed myself, and the rolls are always homemade.  I always ask the kids what they want me to cook and these are always the things they tell me they remember most.  Okay enough about what Thanksgiving and Christmas are all about.  Of course, the feasts are secondary to the blessings of God upon our nation and the birth of the Christ child.  That’s why we still say Christmas.  Our Declaration of Independence declares, “…We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness…”  

Now I have 3 “great grandchildren” in addition to my 5 grandchildren.  At Christmas time we make Gingerbread men.  Yes I said “men”.  That’s a story about the Gingerbread Man that I will always remember from my time as a child.  My mother used to tell us these stories.  “Goldilocks and the Three Bears” , “The Three Little Pigs”, “Jack and the Beanstalk”, “Cinderella”, “The Little Red Hen.”—and who could forget “Three Billy Goats Gruff” and “Little Red Riding Hood?”  For me, it is a time for remembrances of olden days and the gathering together of the family members young and old.  Yes we, like you, cherish these special days.  They’re times children never forget. 

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But now to something not quite so pleasant.  You know that we who write on this site really do “take personally” the things we read.  When we can relate, we want to tell the “newbies” of our own experiences because we “lived” them.  We automatically place ourselves back in the moment we first learned that we were diagnosed with cancer, and we know exactly how you’re feeling.  Yes we do!  And because of that we want to share the “do’s and don’ts” that we know for certain, of this EC journey.

Some on this site are survivors currently enjoying the good life, and that’s a blessing.  Others of us are still in the middle of the battle fighting off further spread of our cancers, but still we’re alive and that’s a blessing—being able to share one more Thanksgiving and one more Christmas.   As for me, I was so sick this past weekend that I wondered if I was going to make it.  But here I am, a bit weaker and dehydrated, but I’ve lived to see another sunrise.  And it doesn’t help to get my blood pressure elevated when I read that some doctor says that HERCEPTIN has not been approved, therefore they don’t prescribe it!  GOOD GRIEF MOUNTAIN GIRL!  WHERE HAS HE BEEN?  What else might he not know, and he is treating your husband!   We are just laymen, and we know it! 

Just who is this “doctor” at this “cancer center” that doesn’t know that Herceptin was approved 7 years ago?  Don’t mind telling you, this upsets me greatly!  I know you and your husband are blazing a new trail with this EC diagnosis, but you’re talking with one “old pioneer” who has already been on the rocky bumpy road that you’re now on.  You know “terminal” cancer patients like myself don’t have time to “beat around the bush.” 

You’ve shared several things with us that LET ME know that you should be having a SECOND opinion.  Now I know you have a mind of your own, but my mama told me you should always “listen to your elders!”  And I’m almost 79.  By looking at your picture I am old enough to be “your mama!”  And this mama says:

• Pure and simple, your HER2+ husband needs HERCEPTIN.  Your doctor is ‘uninformed’ aka “wrong!”  I’m unhappy first with the fact that he wasn’t going to put in a medi-port because he thought your husband’s veins could withstand multiple sticks and multiple medications that are given intravenously between now and the time of his hopefully upcoming surgery, and during the surgery and period of recuperation afterwards. And now I learn that the “doctor?” doesn’t want to put your husband on a med that has proven to curtail the rapid rampage that HER2+ cancer cells love to go on.  My soul—what next?  Herceptin was long ago (2010) approved by the FDA to combat the “Increased/uncontrolled cell proliferation” by this oncogene that so many Esophageal cancer patients as well as stomach cancer patients test positive for.  HER2+ stands for HUMAN EPIDERMAL GROWTH FACTOR RECEPTOR 2.

As I’ve stated in many posts in the past, at first only Breast Cancer patients were believed to test positive for this oncogene that allows the cancer to spread much more rapidly.  So it was first given approval by the FDA for BC patients.  Then it was discovered that Esophageal cancer patients were also testing positive for this very same oncogene, so way back in 2010, the FDA approved HERCEPTIN for EC patients as well.  See the proof below by the National Institutes of Health.  Please!  Ed is correct and living proof that it has prolonged his life. 

I’m happy to know that your husband is getting some nourishment, because he certainly has been a long time without proper nourishment because of his inability to swallow.  Please don’t dismiss what we have to say just because we’ve never met you in person.  Seems your doctor, whoever he is, still has things to learn about the treatment of Esophageal Cancer patients and Herceptin usage in particular.   

And I’m certainly glad to know that a new doctor is coming on that knows how to conduct the Ivor Lewis Minimally Invasive Esophagectomy.  Although I would want to know that whoever he/she is that they have performed at least 25 or so before they operated on me.

You would be wise to research the new surgeon’s name and check up on his/her background and especially their expertise with regard to the Ivor Lewis Minimally Invasive Esophagectomy.  Dr. Luketich, the pioneer of the MIE, no longer makes a neck incision because of the possibility of potential damage to the laryngeal (voice) and pharyngeal (throat) nerves that are so close to the Esophagus.  The one incision to remove the diseased Esophagus is now made on the right side of the chest.  Would you please ask the new surgeon about where he received his training, and how long he has been performing the MIE?  Moreover, does he make a neck incision or a chest incision?  This is important also. 

There are places where you can check up on doctors for their credentials and their training.  Another way to find out how much they really know is to see how many peer reviewed articles have been published by major medical journals.  Dr. Luketich has written all or parts of literally hundreds of articles.  So you can check on their “publications” list on places like https://www.healthgrades.com/doctor-reviews.  Here are other websites where I can compare and contrast physician’s qualifications for their treatment of different types of cancers.  They are:   http://www.vitals.com/, https://doctor.webmd.com/, http://www.ucomparehealthcare.com/.

There should also be a biographical page listed in the hospital where they are currently employed.  And then there is the USNews Health Report which gives a rating on doctors.  https://health.usnews.com/doctors/search.  So there are multiple places that you can conduct research.  Your future depends on it believe me.

This is very important.  I realize that often new patients are intimidated by their doctors because the doctor seems to be the “one in charge” and they feel they are at his mercy.  And believe me, sometimes being at the doctor’s mercy does not bode well for the poor patient.  You should print out this FDA article and give it to him and DEMAND that Herceptin be included NOW.  Herceptin is not chemotherapy or a hormone therapy.  It is called a monoclonal antibody which utilizes the natural immune system to kill tumor cells!

It’s a long rocky road prior to recovery.  Every decision can be a “make-or-break” choice.  Hope this letter doesn’t offend, but it’s your husband’s life on the line, and you don’t want him to be denied any treatment that has been approved by the FDA in his treatment—in this case—Herceptin!

Continued love & prayers for ya’ll on your EC journey—

Loretta

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 [My note:  This is a 3:55 video to tell how Herceptin works.  Remember that it was first thought that only BC patients had this over-expressive oncogene, but more recently it was found to also be found in Gastric cancer patients as well, and thus it HAS BEEN APPROVED FOR ESOPHAGEAL CANCER PATIENTS!

1.      https://www.youtube.com/watch?v=CSqi66RUPhM

[My note:  As stated often before, it was first thought that this over-expressive oncogene was only found in BC patients, then it was later discovered that EC patients and stomach cancer patients had the very same oncogene prevalent in practically 22% of their diagnoses.  See the Mayo Clinic article to know more about how a monoclonal antibody works.]

  “The Herceptin drug works by attaching itself to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals. By blocking the signals, Herceptin can slow or stop the growth of the breast cancer. The Herceptin drug is an example of an immune targeted therapy produced by scientist working in the biotech laboratories.  In addition to blocking HER2 receptors, Herceptin can also help fight breast cancer by alerting the immune system to destroy cancer cells onto which it is attached. Blog www.JudyStaveley.com/blog”

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2.      http://www.roche.com/media/media_releases/med-cor-2010-10-21.htm

“Media Release - Basel, 21 October 2010

FDA approves Herceptin for HER2-positive metastatic stomach cancer

First targeted medicine shown to improve overall survival in HER2-positive stomach and gastroesophageal junction cancers

Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced the U.S. Food and Drug Administration (FDA) has approved Herceptin (trastuzumab) in combination with chemotherapy (cisplatin plus either capecitabine or 5-fluorouracil [5-FU]) for HER2-positive metastatic cancer of the stomach or gastroesophageal junction, in men and women who have not received prior medicines for their metastatic disease.

People diagnosed with metastatic stomach cancer should have the HER2 status of their tumors determined, as only patients with HER2-positive disease are eligible for treatment with Herceptin plus chemotherapy.

“Since Herceptin’s approval in HER2-positive, advanced breast cancer more than a decade ago, we have continued to study how the HER2 pathway contributes to the growth and spread of other cancers, such as stomach cancer,” said Hal Barron, M.D., Head of Global Development and Chief Medical Officer at Roche. “Today’s approval of Herceptin in combination with chemotherapy provides an important new, personalized medicine for people with this life-threatening disease, who have few treatment options.”

The European Commission approved Herceptin in combination with chemotherapy for use in patients with metastatic stomach (gastric) cancer exhibiting high levels of HER2, in January 2010.

About the ToGA study

The FDA approval is based on positive results from an international Phase III study, known as ToGA, which showed that people who received Herceptin plus chemotherapy lived longer compared to those who received chemotherapy alone…

About Herceptin

Herceptin is a humanized antibody, designed to target and block the function of HER2, a protein produced by a specific gene with cancer-causing potential...”

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 3.      https://www.cancer.gov/about-cancer/treatment/drugs/esophageal

“This page lists cancer drugs approved by the Food and Drug Administration (FDA) for esophageal cancer. The list includes generic names and brand names. The drug names link to NCI's Cancer Drug Information summaries. There may be drugs used in esophageal cancer that are not listed here.

On This Page

• Drugs Approved for Esophageal Cancer
• Drug Combinations Used in Esophageal Cancer

Drugs Approved for Esophageal Cancer

• Cyramza (Ramucirumab)
• Docetaxel
• HERCEPTIN (TRASTUZUMAB)
• Ramucirumab
• Taxotere (Docetaxel)
• TRASTUZUMAB

Drug Combinations Used in Esophageal Cancer

• FU-LV
• XELIRI

Related Resources

• Esophageal Cancer—Patient Version
• Chemotherapy and You: Support for People With Cancer
• Posted: January 15, 2015”

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4.      https://www.cancer.gov/types/esophageal

National Cancer Institute --  Esophageal Cancer—Patient Version

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5.      https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/monoclonal-antibody/art-20047808

Monoclonal antibody drugs for cancer: How they work

If you're considering monoclonal antibody therapy as part of your cancer treatment, learn about these drugs and carefully weigh the benefits against the potential side effects.

By Mayo Clinic Staff

Monoclonal antibody drugs are cancer treatments that enlist natural immune system functions to fight cancer. These drugs may be used in combination with other cancer treatments.

If you and your doctor are considering using a monoclonal antibody drug as part of your cancer treatment, find out what to expect from this therapy. Together you and your doctor can decide whether a monoclonal antibody treatment may be right for you.

How does the immune system fight cancer?

The immune system is composed of a complex team of players that detect and destroy disease-causing agents, such as bacteria and viruses. Similarly, this system may eliminate damaged or abnormal cells, such as cancer cells.

One factor in the immune system is the work of antibodies. An antibody attaches itself to a specific molecule (antigen) on the surface of a problematic cell. When an antibody binds to the antigen, it serves as a flag to attract disease-fighting molecules or as a trigger that promotes cell destruction by other immune system processes.

Cancer cells may outpace the immune system, avoid detection, or block immune system activity.

WHAT IS A MONOCLONAL ANTIBODY?

Monoclonal antibodies are laboratory-produced molecules engineered to serve as substitute antibodies that can restore, enhance or mimic the immune system's attack on cancer cells. They are designed to bind to antigens that are generally more numerous on the surface of cancer cells than healthy cells.

How do monoclonal antibody drugs work?

Monoclonal antibodies are designed to function in different ways. A particular drug may actually function by more than one means. The role of the drug in helping the immune system may include the following:

• Flagging cancer cells. Some immune system cells depend on antibodies to locate the target of an attack. Cancer cells that are coated in monoclonal antibodies may be more easily detected and targeted for destruction.
•  Triggering cell-membrane destruction. Some monoclonal antibodies can trigger an immune system response that can destroy the outer wall (membrane) of a cancer cell.
•   Blocking cell growth. Some monoclonal antibodies block the connection between a cancer cell and proteins that promote cell growth — an activity that is necessary for tumor growth and survival.
• Preventing blood vessel growth. In order for a cancerous tumor to grow and survive, it needs a blood supply. Some monoclonal antibody drugs block protein-cell interactions necessary for the development of new blood vessels.
•  Blocking immune system inhibitors. Certain proteins that bind to immune system cells are regulators that prevent over activity of the system. Monoclonal antibodies that bind to these immune system cells give the cancer-fighting cells an opportunity to work with less inhibition.
•  Directly attacking cancer cells. Certain monoclonal antibodies may attack the cell more directly, even though they were designed for another purpose. When some of these antibodies attach to a cell, a series of events inside the cell may cause it to self-destruct.
•  Delivering radiation treatment. Because of a monoclonal antibody's ability to connect with a cancer cell, the antibody can be engineered as a delivery vehicle for other treatments. When a monoclonal antibody is attached to a small radioactive particle, it transports the radiation treatment directly to cancer cells and may minimize the effect of radiation on healthy cells. This variation of standard radiation therapy for cancer is called radioimmunotherapy.
•  Delivering chemotherapy. Similarly, some monoclonal antibodies are attached to a chemotherapeutic drug in order to deliver the treatment directly to the cancer cells while avoiding healthy cells.
•  Binding cancer and immune cells. Some drugs combine two monoclonal antibodies, one that attaches to a cancer cell and one that attaches to a specific immune system cell. This connection may promote immune system attacks on the cancer cells…”

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 6.      https://www.cancer.gov/about-cancer/treatment/drugs/stomach

“This page lists cancer drugs approved by the Food and Drug Administration (FDA) for stomach (gastric) cancer. The list includes generic and brand names. This page also lists common drug combinations used in stomach (gastric) cancer. The individual drugs in the combinations are FDA-approved. However, the drug combinations themselves usually are not approved, although they are widely used.

The drug names link to NCI's Cancer Drug Information summaries. There may be drugs used in stomach (gastric) cancer that are not listed here.

On This Page

• Drugs Approved for Stomach (Gastric) Cancer
• Drug Combinations Used in Stomach (Gastric) Cancer
• Drugs Approved for Gastroenteropancreatic Neuroendocrine Tumors

Drugs Approved for Stomach (Gastric) Cancer

• Cyramza (Ramucirumab)
• Docetaxel
• Doxorubicin Hydrochloride
• 5-FU (Fluorouracil Injection)
• Fluorouracil Injection
• Herceptin (Trastuzumab)
• Mitomycin C
• Mitozytrex (Mitomycin C)
• Mutamycin (Mitomycin C)
• Ramucirumab
• Taxotere (Docetaxel)
• Trastuzumab…”

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7.      https://www.youtube.com/watch?v=Q3Tzc3jGt3U

[A 4 min. video explaining how HER2+ patients have an oncogene that can grow uncontrollably.]

“Genentech VP of Clinical Oncology Dietmar Berger discusses the role of the HER2 receptor in metastatic breast cancer.”

“The HER Pathway and Cancer”

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8.      https://www.youtube.com/watch?v=pSN2PRcYz4k

[My note:  This is a 5-minute video explaining how Herceptin works.]

“This presentation outlines the research and development that led to Herceptin, the first effective monoclonal antibody treatment for cancer. A power-point version of this presentation can be downloaded from our website: http://www.understandinganimalresearc...”

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9.      https://www.youtube.com/watch?v=zIClH2pGBpA

This is a 2 min. video that further states what Herceptin does.

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10.  https://www.youtube.com/watch?v=51AU8D0cqdI

[A 12:43 minute video on how Herceptin came to be] by Susan Desmond-Hellmann (UCSF): Herceptin and Drug Development]

iBiology Science Stories

Published on Jun 18, 2011-  

http://ibiomagazine.org/issues/june-2... Desmond-Hellmann discusses the drug development process and shares her experience with the targeted cancer therapeutic, Herceptin.

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 11.         http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

 “MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG

 By Melissa Turtinen - April 4, 2017 12:17 pm

 The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

 The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

 The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

        Only 12 percent of patients left the Mayo Clinic with the same diagnosis.

        In 21 percent of cases, the diagnosis was changed completely.

        In 66 percent of patients, their diagnosis was refined or redefined.

 “Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

 A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

 “Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.

                                                            HOW TO ASK FOR A SECOND OPINION

It may seem a little awkward to ask your doctor for a referral to get a second opinion, but don’t worry – asking for a second opinion is pretty normal, U.S. News and World Report says, noting any doctor who is good at what they do will welcome a second opinion.

 Here are some tips about seeking a second opinion:

 – Don’t worry about asking for a second opinion for the minor things. Instead, seek a second opinion for serious or chronic issues, especially if you’re unsure about your doctor’s diagnosis or if the treatment for the issue is experimental or risky, U.S. News and World Report notes. But it’s important not to wait too long to get a second opinion, because you don’t want to delay treatment for too long, the Patient Advocate Foundation says.

 – When asking for the second opinion, tell your doctor you just want to be fully informed about your diagnosis, prognosis and treatment, Compass Healthcare Solutions suggests. You can ask your doctor for a referral to see a specific doctor you have in mind, but WebMD says don’t see a doctor that is affiliated with your initial doctor – they probably won’t contradict them.

 – Before you go see the new doctor, make sure you get a copy of your medical records and test results, the Patient Advocate Foundation says. Sometimes tests can be wrong, though so WebMD says you can ask for a second medical opinion and for the lab or pathologist to do the tests again.

 – When you go in for your second opinion, remember you’re looking to confirm your current diagnosis – the second opinion isn’t always right, U.S. News and World Report says. Doctors may differ on your diagnosis or a treatment plan, and ultimately it’s your choice to decide what’s best for you, the Patient Advocate Foundation says.

 For more information on when and how to get a second opinion, click here."

  ____________End of references but not all that are available for HER2+ facts______