HELP-need Stage 3 EC Cancer survivor stories

K_ann1015
K_ann1015 Member Posts: 500
edited March 2014 in Esophageal Cancer #1
Hi all,
\As most know, my dad has stage 3 EC had surgery 12/09 and doing well but needs to gain weight. But, My my uncle---my dad's little brother has also been diagnosed with EC -also stage 3. HE did go for 2nd opinion at Moffitt in Tampa. I do not not know all details of what was actually said but he was told to go back to Tallahassee to start chemo & radiation with their guidance (the Tallahassee hosp is affiliated with Moffitt). Something was said about Moffitt "not having any magic" and that he needed to start he treatment locally asap. Anyway, as we all were at those early stages they are scared and worried. My uncle needs some hope. I know of William, Jeff (as in Lori-- :) ) and a few others....but if you all wouldn't mind me sharing your info, I would like to share that this game isn't over at the diagnosis!!!!!

So I have some work to do---but hope to compile some stage 3 stories --I can also share them with all of you as well.

Too many of the sites out there have only the doom and gloom stories---this is is one of the few sites that focuses on the positive human spirit in this disease---even if it doesn't always turn out how we all want it too. You all are such a wonderful group of caregivers, patients and family members! I have gotten such hope, inspiration and guidance form this site---I would like to share to yet one more EC family. I don't want to use info with out permission, so that is why I ask (I know William & Lori will be fine with this!)

The domino effect of cancer is staggering....thanks for helping me & others. God Bless you all---new and old posters!

Kim

Comments

  • oriontj
    oriontj Member Posts: 375
    #2
    Not Stage 3 but 4 and my
    Not Stage 3 but 4 and my husband is ok for now...He couldn't have surgery but after chemo and radiation he has been clear since December...we think the experimental drug in his chemo cocktail, Erbitux had a lot to do with this.

    Maybe they could check on clinical trials at least ask about them

    orion
  • Donna70
    Donna70 Member Posts: 852 Member
    #3
    oriontj said:

    Not Stage 3 but 4 and my
    Not Stage 3 but 4 and my husband is ok for now...He couldn't have surgery but after chemo and radiation he has been clear since December...we think the experimental drug in his chemo cocktail, Erbitux had a lot to do with this.

    Maybe they could check on clinical trials at least ask about them

    orion

    Was Stage III
    Hi Kim,
    I started out as Stage III but after my surgery, 12/8/10, the dr told me I was now Stage II.
    My mentor who helped me out during my surgical and treatment is a 75 yr old very fit woman who is now in her 8th yr after having treatment and esophagectomy for Stage III also. There is always hope and the longer you are around, the more drugs are found to be effective. Good luck to your Dad and your uncle. I always say until the dr tells me to call the undertaker I am still going to fight. take care, prayers always,
    Donna70
  • MOE58
    MOE58 Member Posts: 589 Member
    #4
    Please use our story
    Kim

    Please use our story go back as far as may of last year and read up on my journey, I also have one on FB under notes, if you want to use that.

    If I can help more let me know

    Love
    Lori
  • steve_eg
    steve_eg Member Posts: 1
    #5
    I was a IVa
    I am a stage IVa survivor. I'm a little over 18 months out of surgery, and have returned to a full, productive life. I was getting scanned every three months, but my MedOnc has said that I can now move to a 6 month rotation.

    I had chemo+radiation (cisplatin/5FU) and 25 radiation treatments, concurrently with the chemo. That was July-August of 2008. In Sep 2008 I had the TTE (aka Ivor-Lewis). I returned to work PT in 4 months, FT in 5 1/2 and was back into Karate at 6.

    I'm not going to say that I've beat it. I'm not that cocky, but I will say that so far, I'm disease free, and living my life. Everyone tells me that if I make it two years without a recurrance, the odds of it returning diminish considerably.

    Best of luck. Prayers-

    Good to the next intersection.

    Steve
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
    Kim,
    You are welcome to
    Kim,

    You are welcome to share my Dad's story with your uncle. Below is a post I recently sent to Peachy when she got bad news about her dad. Although we are only 5 months into the treatment of this cancer and don't have any assurances we hold on the hope, the possibility of a miracle and the power of prayer. We know there will be good days and not so good days like the past week --- but we treasure the time we have and look forward to beating this horrible cancer. And remember my dad went to Sloan Kettering in New York for this second opinion, they then they decided to do the chemo and radiation in New Orleans and Sloan coordinated the chemo/radiation with Oschner Clinic in New Orleans so they could be at home. So perhaps the docs at Moffit want your uncle to be at home and comfortable for the treatment. If my dad has surgery he will go back to Sloan. If you have any other questions send me an email with your number and I will give you a call.

    Take care, Cindy

    Peachy,

    Don’t give up and don’t think there isn’t anything you can do even if surgery isn’t an option. If your dad wants to fight them help him do it because I am sure there are a lot of people that really enjoy having him around.

    My dad had Stage III, T3N1M0 cancer and is 78 with complications of diabetes, high blood pressure. He was very active (Left the house at 10 and would return at 6 or six) has hobbies that keep him busy and is very social, generally in good health with a positive attitude. He got a second opinion which was vastly different than his first diagnosis.
    So we heard . . . He is a candidate for surgery, maybe he is too old for surgery, he should do 3, no 1, no 2 chemo agents, he should have radiation, no he shouldn’t have radiation . . . maybe he can’t tolerate any radiation. I think you get the drift. So anyway we got that book 100 questions and answers to esophageal cancer and read it and talked and got advice from people on this site. My father said he wasn’t going to let someone else decide if he was going to live or die and he was going to fight this thing because he still had a lot of good years left in him and a lot of unfinished things to do.
    Fast forward – the treatment - settled on chemo and radiation and would determine whether surgery is appropriate after he completes the treatment with considerations of quality of life. The oncologist at Sloan said that they have seen the chemo and radiation completely eliminate a tumor. They settled on two chemo agents which would do the least damage to his liver --- carboplatin and taxol --- so fast forward some more.

    After his first round of chemo they did a pet scan (no radiation yet). The results were remarkable and astounded the doctors. Yes prayer and positive attitude will always confound someone looking at statistics. Anyway, the pet scan indicated that there was no activity in the lymph nodes which had earlier been staged with active cancer and the tumor in his esophagus had a reduced SUV activity from 10 to 4.1 (at 3 the doctors told my dad that the tumor would be considered inactive). Really amazing. So then they start the radiation and good news bad news happens.

    His tumor has shrunk so much after 10 treatments (GOOD NEWS) that the stent in his esophagus to help him swallow falls into his stomach and he has to have emergency surgery to remove it from his stomach and insert a new one. Plus his white blood count is nonexistent so they have to delay any more chemo. He is very weak right now but he will resume radiation tomorrow and chemo as soon as his blood count is up. But right now I am telling him this is a cloud with a wonderful silver lining and now 2 days post surgery he is still scared but taking all this in stride. I go to visit him in New Orleans for a week in May, my Uncle is going down next week and in the meantime we are going to try to arrange having someone come in to help out. So it won’t be easy --- but it definitely is worth it.

    Let me know if I can help in any way.

    Cind
  • K_ann1015
    K_ann1015 Member Posts: 500
    #7
    thank you all
    thank you all....
    My uncle is in the Er/hospital with stomach ache and head pain etc. We don't have details yet, but thank you all for your input---I nee to share because I am afraid he may be thinking the worst for himself.

    SO thanks YOU ALL for taking the time to post---you will make a difference for at least one---but maybe other folks that just read this site....

    God Bless you all fighting this disease
    Kim

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