17 year survivor

dwhiteorganist
dwhiteorganist Member Posts: 2 Member
edited January 2 in Esophageal Cancer #1

may 2024 be a better year for you all. It’s been a long time since I last checked out this site. I wanted to offer hope to any and all that visit. I am an unusual 17 year survivor and you might be too! Please feel free to reach out

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Comments

  • jwkelly
    jwkelly Member Posts: 26 Member

    Good for you, I guess, I m 2years plus in,just got back from 2 months inn hospital from a displaced feeding tube ripping a hole in my stomach,stomach absess too,liver damage and surgery to stop bleeding into the stomach,2 clamps.Multiplre weeks of esophagus bleeding and vomiting blood,medication issues and allergic reaction that mimiced a heart attack..I decided to go AMA and returned home last night. I have Jaundice too,bil and blood filling my g tube that must be drained,but better to e home by myself than hospital and hospice. See how long I last

  • MKR117
    MKR117 Member Posts: 1 *

    Hi your post is great to read. My husband just finished 2nd round of chemo so now effectively done. He’s been amazing and so positive as we both have. It’s now reality of the future is kicking in and so reading your post has helped my anxious thoughts for our years ahead. Thank you

  • JSPIEGELHAUER
    JSPIEGELHAUER Member Posts: 6 Member

    What stage were you? Did you have surgery? I read it's a rare cancer and rarely survivable. Also only 20% had a chance of 5 years life. It depresses me reading all these statistics but I'm glad to hear they are wrong with the survival stories

    ❤️

  • JSPIEGELHAUER
    JSPIEGELHAUER Member Posts: 6 Member

    From surgery??

  • dwhiteorganist
    dwhiteorganist Member Posts: 2 Member

    this August marks 18 years post surgery. I was a stage III.

  • chepito
    chepito Member Posts: 2 Member

    Good evening: My name is Manuel and I was diagnose with Cancer of the upper Esophagus back in February 6, 2024. I've completed 5 weeks of Chemo/Radiation (combo) back on April 26, 2024. The treatment didn't go as planned by the doctors and I just started a second phase treatment of Chemo medicines this past weekend that will go on for 2 months, treatments every two weeks with a take home small tube home and it's disconnected two days after treatment. The thing is that the medicines/Chemo that I've given are drugs to treat Cancer of the Colon or Rectum and I don't have cancer of the Colon. I've already sent a message to the Oncologist and her team about this and I'm waiting for a reply from them. The Chemo is, Folfox = Folinic Acid, Fluorouracil and Oxaliplatin.

    Does this makes sense to you? I would appreciate it if you or someone else can give me any comments about this, I'm concerned that these doctors are given me wrong medications.

    Thank you.

    Sincerely,

    Manuel

  • LimogesGuy
    LimogesGuy Member Posts: 15 Member

    I wouldn’t worry about this too much. I think the chemotherapy you got is pretty much generic for many cancers. It’s only after the tumour is removed and analysed you’l get bespoke chemotherapy called immunotherapy.

  • JSPIEGELHAUER
    JSPIEGELHAUER Member Posts: 6 Member

    I am stage 3 too. Finished radiation and chemo but the surgeon I saw said location was too risky and said no one will do it. I'm currently looking for a second opinion.

  • _happy_camper_
    _happy_camper_ Member Posts: 3 Member

    Definitely recommend to get a second opinion from another oncologist specializing in esophagus cancer.

    The response to chemotheraphy is not linear: I've had good response for FOLFOX initially followed by a plateau.

    Do go over if you are a good candidate for radiation or proton therapy, and whether surgery is an option for you. Surgery may have some side effects that are long term so it needs to be considered carefully.

  • Sham9957
    Sham9957 Member Posts: 1 *

    my husband was dx with esophageal cancer in April. Did 6 weeks of chemo ans radiation. he received oxaliplatin and another medicine. Did well with treatment. Has 2/3 of his esophagus removed 6 weeks ago at uams in Arkansas. They repair the esophagus using part of the stomach. He is currently being fed with a feeding tube to the small intestine and just now being allowed to start eating some soft foods working up to regular diet slowly. He was a stage 3. Although the surgery is TOUGH. he had a big stay in the hospital due to a lung infection and sepsis. He is doing well and getting stronger each day. So stay positive, and the dr says they do not see his cancer returning and they see him living a long life. My husband is 45 years old. So stay positive , keep the faith , u can beat this !!

  • Kiowa98
    Kiowa98 Member Posts: 1 Member

    Hy husband is stage III, 2 1/2 years in. He has had surgery, radiation, and 60 rounds of chemo, and is about to start a trial. We would like to hear your story and how you are a survivor please! How did you survive?

  • adawn
    adawn Member Posts: 6 *

    My husband is surviving 1 1/2yrs post surgery. As you know it is a tough recovery.At 6'5 and 168lbs, he is not doing so well mentally. I struggle with his self care and will to move on. His loss is shared... We are now what I refer to as "the grey people" muttering through each day still numbed by our losses of vitality, health and happiness. Any suggestions on how to get out of this slump and move forward toward a true recovery, of mind and soul.

  • adawn
    adawn Member Posts: 6 *

    How are you doing as a caregiver? Our story is similar to yours, with my husband 1 in a half years post surgery and no cancer detections, we are stuck in a cyclic cycle of depression and lack of success moving beyond the cancer. I would like to know how you helped your spouse to want to move forward to healing mentally.

  • todd60
    todd60 Member Posts: 1 Member

    I was diagnosed in October 2024. They went directly in and put in the J tube and port for chemo. Had first treatment and was very rough and very sick for 9 days. Then almost felt normal and the next treatment was schedule and completed. Felt sick but that’s to be expected. I just don’t know what to expect or how to make this the most tolerable as possible. Continued weight loss scares me as already lost 70 lbs since this all started. Doing my best to take in calories along with daily tube feeds. But any trick or tips will be most helpful. As well as all of the things I am going to find out going throughout this that no one tells you. I have not know anyone with esophageal cancer. I was diagnosed with stage 3

  • _happy_camper_
    _happy_camper_ Member Posts: 3 Member

    if J-tube does not allow you to maintain a healthy weight, you clearly need to ask for more. “More” could mean TPN through your port. Notice that some doctors are less comfortable using the port for both TPN and chemo at the same time. Best is to verify with your oncologist.


    I had a stent placed in my esophagus to help with swallowing. It is kind of troublesome as it caused a lot of vomiting daily, and I am still trying to figure out why.


    I am stage 4 esophagus cancer patient. Have gone through 4 cycles of different chemos, proton Theraphy and now participating in a research study.


    if your cancer was found early enough; radiation may allow you to eliminate it and do an esophagectomy. The window of opportunity for this is fairly small, as you need to be off chemo, and make sure the cancer is curbed enough to not spread while recovering from esophagectomy.


    none of the above is medical advice. Always do your due diligence. People’s milage may vary.

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