New EC stage 4- overwhelmed with questions-help please.

LivingFaith
LivingFaith Member Posts: 74
edited March 2014 in Esophageal Cancer #1
Hello All~
I'm so glad I found this site last week, but wish I never needed to look. Your stories and info have been so helpful. We found out 2 weeks ago my dad, age 65, has EC stage 4 with mets to the close nodes and then they found a small hot spot on his liver, just after we had our hopes up it was only stage 3. Rats, what a game changer!

Where to start? After his pet scan on Friday the 16th, he got his port on Monday, and Tuesday he started chemo. 5fu and Cisplatin for 5 weeks is the plan then another pet scan.

What to do in these next 4 weeks? He wants to fight this with everything he has and has a positive survior's attitude. My younger sister passed away last summer which was devastating to him. She was a single mom and my parents are now raising her daughter. He wants to be around for her for at least 5 years. Yes we know the stats, but someone has to be that % who make it that long.

Dad is getting pretty fatigued. Any suggestions to help? He can barely swallow. We have been hopping him up on protien shakes, ensure, and now benecalorie but is appetite is way down. He would hate it, but when do you qualify for a j-tube? The Dr. also talked about a stent. I have read some not so positve things about those on here. He is already being treated at and Esophageal Center that is doing reasearch on EC. Do we try and get a 2nd opinion? This is best place in our area.

Speaking of research. The dr asked me and my dad to be in a study. He said it would not change the outcome for my dad but could help others and maybe myself. They are studying the genetic link between Barretts and EC in families. I would have to get scoped and have tissue samples of my stomach taken. They would also do genetic studies and counciling. Has anyone done a study that is purely for research, not to actually benefit the patient?

Sorry this is so long. Lots of questions. Any suggestions welcome. God bless everyone on here. You are included in my daily prayers.

Thanks....Deb

Comments

  • BMGky
    BMGky Member Posts: 621
    #2
    Eating, fatigue, etc.
    A jtube, while for some can be somewhat troublesome, is very helpful and I feel essential to anyone with swallowing problems. Further, radiation and chemo can cause great fatigue. My husband could not even look at TV ads about food at times. Lost his appetite completely. The jtube was a life saver. There are others on this site that can tell you much more about Stage IV. There have been many good advances in care, and there are several members who have family members or they themselves have dealt with advanced cancer and mets. You didn't mention your cancer center and its experience with esophageal cancer. You do want a team that knows esophageal cancer. Treatment is challenging and you want the best possible outcome. My husband had to be hospitalized three times, twice during the treatment phase and then, of course, during his surgery. Recuperation is occurring and we are pleased; however, it takes a strong will and strong support to keep a positive attitude. Good luck to you.
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • LivingFaith
    LivingFaith Member Posts: 74
    #4
    unknown said:

    This comment has been removed by the Moderator

    I'm going to talk to my mom
    I'm going to talk to my mom about the Jtube right away. The first couple of days after his first chemo he could swallow better than he had in weeks. It has just been in the last day or two that is got worse. He is on couple of meds for nausea which hasn't been a problem. It's the lack of appetite now and he is getting tired of sweet drinks. He does like soups and we can add a Benecalorie to it. I know he doesn't like being "nagged" to eat. One good thing is he a pretty big strong guy who has some extra pounds on him. I already told my mom about the Adderall for his fatigue.
    He is still working full time,which he loves, but gets wiped out at night. He needs to rest more but I think is just coming to terms with he can't do everything like he did before. Is that a guy thing, trying to push yourself to not slow down, or part of the journey of accepting cancer?
    When it comes to getting a 2nd opinion, should you go right away? He just started chemo last week. Do you make an appt with a new medical oncologist in the area? I don't know if he would be able to travel all over the country to get treatments. He has been seen at Creighton Med Center in Omaha. They have an EC center and are doing research on EC. They mentioned they are working with Mayo,Johns Hopkins,Cleavland,and another center, that I can't remember, on these trials, procedures, and research. The doctor-who was the surgoeon- and head of the center saw my dad, but he is not a canidate to surgery now. They do the minimal invasive stuff but what good is that if you aren't getting operated on? Should we be searching for the best medical oncology instead? Very confusing.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    LivingFaith said:

    I'm going to talk to my mom
    I'm going to talk to my mom about the Jtube right away. The first couple of days after his first chemo he could swallow better than he had in weeks. It has just been in the last day or two that is got worse. He is on couple of meds for nausea which hasn't been a problem. It's the lack of appetite now and he is getting tired of sweet drinks. He does like soups and we can add a Benecalorie to it. I know he doesn't like being "nagged" to eat. One good thing is he a pretty big strong guy who has some extra pounds on him. I already told my mom about the Adderall for his fatigue.
    He is still working full time,which he loves, but gets wiped out at night. He needs to rest more but I think is just coming to terms with he can't do everything like he did before. Is that a guy thing, trying to push yourself to not slow down, or part of the journey of accepting cancer?
    When it comes to getting a 2nd opinion, should you go right away? He just started chemo last week. Do you make an appt with a new medical oncologist in the area? I don't know if he would be able to travel all over the country to get treatments. He has been seen at Creighton Med Center in Omaha. They have an EC center and are doing research on EC. They mentioned they are working with Mayo,Johns Hopkins,Cleavland,and another center, that I can't remember, on these trials, procedures, and research. The doctor-who was the surgoeon- and head of the center saw my dad, but he is not a canidate to surgery now. They do the minimal invasive stuff but what good is that if you aren't getting operated on? Should we be searching for the best medical oncology instead? Very confusing.

    Welcome
    Hi Living Faith and welcome to our loving family of ec survivors, patients, and caregivers!
    I was a caregiver for my dad. He passed away in March after a very long 16 month battle with ec with mets to the liver. Let me first say from one daughter to another, you are doing a wonderful job. Keep up your good work. I think you are in a wonderful cancer center. If they specialize in treating ec, and they are associated with such great cancer centers as Mayo and John Hopkins, why go anywhere else? I do not feel a second opinion is necessary. I would suggest talking to the dr. about the j-tube. My dad never did need one, but he did get a stent put in in Dec. due to scar tissue. He did very well with the stent. God bless him for still working full time. If he can continue to do so, do it! Working will occupy his mind. It is a guy thing to push themselves. His body will tell him when it is time to slow down. Is your dad able to be operated on once the tumor shrinks? I will be thinking of you and praying for you daily. Keep in touch when you can. Give all of you a hug. You have come to a wonderful site. We will always be here for you. The caregivers discussion board is just as good.
    Tina
  • unclaw2002
    unclaw2002 Member Posts: 599
    #6
    Deb,
    I am also a daughter,
    Deb,

    I am also a daughter, my 78 year old dad was diagnosed in December with Stage III EC.

    As for eating I agree with others who have already posted get your dad a j-tube and insist that it be done soon. You don't want him to get weaker, dehydrated and undernourished. And finally you are right someone has to end up on the winning side of the stats. One of my dad's doctors told him to ignore the stats because he was a statistic of one.
    Can you provide some specific information on that study you mention investigating the genetic link? Where is you dad getting treatment?

    I am sure there are folks on the site who might be interested in participating or find out about the research.

    Good luck and welcome to this site - it has been a lifesaver for me.

    Thanks,
    Cindy

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