ECEF Newsletter March 31, 2016

The first quarter of 2016 has been a very active quarter for ECEF. We have started to take ECEF to the next level and are beginning to get more involved with Associations and events that we can attend and tell people about what ECEF is all about.

  • During the First Quarter, we attended the General Thoracic Surgery Club (GTSC) meeting in Tucson Arizona. We did a 20 minute presentation about the various services we provide to patients, and we explained to the 120 surgeons and medical staff attending how we can add value to their practice by providing support services to their patients. Telling patients that they have support groups that meet by conference call,  post surgery, will give the patient the sense that he is not alone in this recovery process  and will always have a way of seeing how other patients are doing in comparison to their own recovery process.
  • As a result of that meeting, we have subsequently  had meetings with surgeons in New Jersey to explore how we can get the awareness message out to the public in New Jersey.
  • We will have a table at a Health Forum evening in our local community in May to share with the residents the results of persistent heartburn and the risk of esophageal cancer.

EVENTS

Linda Desiderio, In Memory of Pete Desiderio Event

We want to thank Linda for doing an event at Bowlmor in Long Island in memory of her husband Pete. They raised $2,200 for our research projects this year and cumulative, for the two years they have held this fundraising event, have raised a total of $5,675. for our research projects. Thank you Linda.

April is Esophageal Cancer Awareness Month

We have a You Tube Channel that contains various videos about esophageal cancer https://www.youtube.com/channel/UCDkh7_H9BOnNASdmG4pdF0g .Within this channel there is an awareness video that we would ask you send to your family, friends and business associates making them aware that Heartburn can cause esophageal cancer. https://www.youtube.com/watch?v=IwmH-Woq5uw. We can also use your help in subscribing to this You Tube Channel as we will have all of our videos produced by Google free of charge if we can get to 1,000 subscribers.

We have the following events slated to be held during the month of April:

Dash for Dr George

You can click on the following link to see what this event is all about. If you would like to donate to this event you can do so by clicking on the donate button at the bottom of the link provided http://fightec.org/events/dash-dr-george/

The 2016 Esophageal Cancer Memory Walk

You can click on the following link to see what this event is all about. If you would like to donate to this event you can do so by clicking on the donate button at the bottom of the link provided.  http://fightec.org/events/esophageal-cancer-memory-walk/

Esophageal Cancer Peer-Patient Program

We have renamed our Patient to Patient Program, The Esophageal Cancer Peer-Patient Program (PPP). In dealing with Institutions, we believe starting with a Post Surgical Conference call Group will provide the volunteer that can be trained in talking to patients on a pre-surgery basis. This service will add value to the surgeons practice and can result in better outcome for patients who they treats.

Research Projects

We were able to complete our Goal for the 2015 year by giving a check to Dr Adusumilli of MSKCC for $50,000.00 This brought our donations for the year  2015 to the $150,000 we set as our goal. Thank you to everyone who made this goal possible.

Articles of Interest

The A Files, Alcohol A-Z for Alcohol Awareness Month

Twenty-six episodes of ‘The A-Files’ will run throughout Alcohol Awareness Month on YouTube, Facebook, LinkedIn, Alcohologist.com and AddictedMinds.com, among other web and social media sites. Episode C covers alcohol‘s role as a carcinogen.
http://www.examiner.com/article/the-a-files-alcohol-a-z-for-alcohol-awareness-month-cancer

Foods that Cut your Cancer Risk. Poor nutrition contributes to about 30% of all diagnosed cancers

http://health.usnews.com/health-news/health-wellness/articles/2016-02-26/15-foods-that-cut-your-cancer-risk

Heartburn’s burn and the risk for esophageal cancer

Dr. Mark Orringer, professor of thoracic surgery at the University of Michigan, and a pioneer in esophageal surgery, has seen a change over the last three decades in the type of patient developing esophageal cancer. Once primarily found in individuals who drank alcohol and smoked excessively, it is now seen in greater numbers with those suffering from obesity, coupled with reflux.  Read Article.

Respectfully submitted

Bart & Ginny Frazzitta

2 Comments



2 Responses to ECEF Newsletter March 31, 2016

  1. XIrvin Mann says:

    Dear Mr. and Mrs. Frazzitta,
    I am not sure I am writing in the proper spot,
    but I will try.

    I had an esophagectemy in May of this year. My progress has been very slow. I get no explanation from my surgeon; but I have learned a lot from your blog. I did not have cancer, but the bottom 1.5 to 2 inches of my esophagus was twisted closed, so I had just one choice to eat again. No hypothesis was given as to why this happened by the surgeon It seems that each doc I see is unwilling to help me understand this.

    I will soon be 6 months out from the operation date. I had 7 dilations before the surgery (with no results). I have been dilated twice since the surgery, the last about 30 days ago.

    I cannot eat anything more than… for size, a small sandwich or tv dinner. It is like the food never enters the stomach, as it feels kind of stuck in the esophagus. I usually have to gag part of it up before I am comfortable.I did get a copy of the ECEF Q&A. Even with a fresh dilation, I get the results. I did get a diagnosis of ulcerative colitis, and I am on Uceris for control. I was not treated for this while inpatient, and a nursing stay of 60 days; having bone crushing diarrhea the whole time. My doctors/nurses were deaf to my reports of diarrhea, so I had to quit eating to stop the diarrhea.
    My total weight loss was 80 pounds. I am now holding on without further loss.

    Any ideas?

    • bart says:

      HI

      I think I need to ask some questions before we get a better understanding of what this is all about.

      First of all where are you located? City and State.
      When they did the surgery did they take the valve between your stomach and esophagus?
      Did they take a part of your stomach with the surgery?
      Where were you treated, (hospital) and by who (surgeon)?
      Are you taking any medication? if so what?

      Once you respond to this note we can talk to doctors hopefully in your area to get their thoughts. You can respond to me at bart@fightec.org

      Take care

      Bart

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