• GregP_WN's Avatar

    GregP_WN wrote on Jackusma57's wall

    Welcome to WhatNext, we are sorry for your need to find us, but happy that we can help you. There are a lot of great people here that have already been through what you are facing and are willing to help you get through it too. If you have questions about anything just post them on the Questions Page. Others will chime in with their personal experiences.

    If you need help navigating the site, please contact me, we are happy to assist. We also have active social pages, you may wish to search those out also. Take some time and poke around the site, there is a world of information here that you will find. The more you dig, the more you will find.

    We have an opportunity for you to make your voice heard with our partner Rare Patient Voice (www.rarepatientvoice.com) to be invited to qualify for surveys and phone interviews for projects that apply to you and if you do qualify you will be compensated on a $100 per hour basis. There are pharma companies that would like to hear about your experiences with certain drugs or side effects. Your information might help develop the next generation of drugs.

    Rare Patient Voice will send you an email inviting you to join their panel. If you say no or don't respond to them at all you will not be added to their panel.

    If you say yes be assured your information is only shared with Rare Patient Voice and is treated with the highest degree of confidentiality. If at any time you want to opt-out of receiving invitations to projects you can do so immediately.

    Thank you for joining us, if you have questions please contact us.
    Greg_P
    5X Survivor
    ACS Voice of Hope

  • BoiseB's Avatar

    BoiseB wrote on Jackusma57's wall

    Hi Jack,
    Cancer patients should not have to fight cancer alone. That's what we, at WhatNext are here for. Please continue to fill out your profile and journey so we can get to know you better.
    I am a 10 year survivor of stage IV Esophageal cancer. I have since moved on to two other cancers. I won't say survival is easy but it is doable and well worth the effort.
    Be sure to visit the PINBOARD and BLOG you will find lots of inspiration, information, and also some humor.

  • BILLY22's Avatar

    BILLY22 wrote on Jackusma57's wall

    What is the stage of your EC?
    Did u have chemo/radiation and then esophagectomy?.
    Are you doing ok, any symptoms?
    I am a 83 yr old, 18 yr survivor of Stage T3N1M0 EC, hope you are moving along ok.

    1 Comment
    • BILLY22's Avatar
      BILLY22

      Jack are you thru with all your treatments?
      What symptoms were you having that sent you to Dr.
      What stage are you?
      Are you having any symptoms now that we might be able to help you with?
      I am ready to fly now coming out of quarantine all I have been doing is my 21/2 mile walk each morning which I enjoy.
      Be well Pal.
      Billy, I8 yr. T3N1M0 EC survivor still in remission.

      2 months ago
  • chiefomni's Avatar

    chiefomni wrote on Jackusma57's wall

    The Esophageal Cancer Education Foundation www.fightec.org has conference call support group for patients with recurrences or stage IV conditions. Please go to our web site and click JOIN (no cost involved) and we will get back to you with the phone number and access code.

    Take care

    Bart Frazzitta
    President
    [phone number redacted]

  • Jackusma57's Avatar

    Jackusma57 asked a questionEsophagus (Esophageal) Cancer

    Has anyone had experience with Keytruda

    4 answers
    • Bloodproblems' Avatar
      Bloodproblems

      Not myself, but a friend started taking it a couple of years ago and did very well on it. Not many side effects and her cancer has stayed stable.

      3 months ago
    • 2943's Avatar
      2943

      Yes. Keytruda trampled a paratracheal lung nodule. Two treatments and I was able to avoid invasive and hurtful lung surgery. Keytruda has ‘changed game plans’ in the world of cancer. Let us know next scan results.

      3 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I was given Opdivo, a cousin of Keytruda, for 5 or 6 years. It completely saved my life. My tumors are still there but stable ... while I was getting treatment, I was able to live life at the same time. Far superior to chemotherapy. I have been off of all treatments for a year and, at least as of the last scan, my immune system continues to hold the cancer at bay.

      3 months ago
  • Jackusma57's Avatar

    Jackusma57 started following