New on board - Husband has Stage IV EC

Kellyw229
Kellyw229 Member Posts: 6
edited March 2014 in Esophageal Cancer #1
Hi everyone -

Although I'm new to this site, my husband has been fighting Stage IV EC since last May. He is 48 years old. He has mets to his lymph nodes and therefore has been told surgery is out. He is on chemo indefinately, with perhaps a chance of radiation somewhere in the future. He started on Irinotecan & 5FU last May and was doing well, until his December scan showed that some of the mets were growing. He also had a reaction to the 5FU pump in which we thought he was having a heart attack. They gave him a break for a few weeks and then in January started him on Taxotere. My husband is diabetic and has high blood pressure as well, so he was already having neuropathy but the Taxotere increased it. He just had a new scan done and again, it showed that some of the mets were growing. His doctor has giving him a month off to help his body recover from the neuropathy and has suggested getting a second opionion.

We feel like we're starting all over again. We have been going to Fox Chase in Philly for the past year because we really felt comfortable with his doctor. However, after a few short months, his doctor left and we had a new doctor. We don't really care too much for the new doctor, but his assistant, who we mostly see, is absolutely wonderful. I feel like getting another opinion at this point is exactly what we need.

We're thinking about 3 places: University of Pennsylvania, which is the closest to us, or John Hopkins in MD or Sloane-Ketting in NY. My first feeling is that we should go to Sloane-Kettering. I have been trying to locate a list, if it even exists, of the top hospitals to go to for EC. It's easy to find a list that shows that top cancer hospitals, but that doesn't really mean they're top in EC.

Does anyone know if this even exists??

~Kelly

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  • Unknown
    Unknown
    #2
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    #3
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  • Kellyw229
    Kellyw229 Member Posts: 6
    #4
    unknown said:

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    Thank you both for being so
    Thank you both for being so kind! My husband is Stage IVA - distant lymph node involvements, but no organs. They are spread out from his neck down into his stomach. I really have no idea how many....we were never given the TNM numbers so that's something I'll definately want to know.

    Dr. Luketich is a thoracic surgeon, but you would see him only if you were a candidate for surgery, correct? My husband is not a candidate. I will, however, try to call them to see if they could recommend which place to go to in our area. If my husband does become a candidate, I would definately arrange to get him to to to Pittsburgh.

    I'm on ListServes but it seems you mostly find people who have had the surgery, or are stage I-III.....there seems to be quite a few stage IV's on here, which gives me so much hope. I truly am glad I stumbled across these discussion boards!

    ~Kelly
  • Unknown
    Unknown
    #5
    Kellyw229 said:

    Thank you both for being so
    Thank you both for being so kind! My husband is Stage IVA - distant lymph node involvements, but no organs. They are spread out from his neck down into his stomach. I really have no idea how many....we were never given the TNM numbers so that's something I'll definately want to know.

    Dr. Luketich is a thoracic surgeon, but you would see him only if you were a candidate for surgery, correct? My husband is not a candidate. I will, however, try to call them to see if they could recommend which place to go to in our area. If my husband does become a candidate, I would definately arrange to get him to to to Pittsburgh.

    I'm on ListServes but it seems you mostly find people who have had the surgery, or are stage I-III.....there seems to be quite a few stage IV's on here, which gives me so much hope. I truly am glad I stumbled across these discussion boards!

    ~Kelly

    This comment has been removed by the Moderator
  • mumphy
    mumphy Member Posts: 440
    #6
    unknown said:

    This comment has been removed by the Moderator

    Kelly
    I know you don't know me but I agree with William! Dr. Luketich was my husbands surgeon he is very good at what he does. I don't think he will turn you down as a second opinion, also
    there are several clinical trials going on at The Hillman Cancer Center here in Pittsburgh.

    My husband unfortunatley lost his battle with this horrible disease but he never gave up and
    the Dr.s didn't either.

    I have been posting since June if you would like understand my story you can go back to the begining and read my posts, also if you would like you can tell the Dr.s that I referred you
    My name is Kathy Franko ask for Aimee and she will know exactly who I am.

    It can't hurt.

    God Bless,
    Kath
  • unclaw2002
    unclaw2002 Member Posts: 599
    #7
    I took my dad to Manhanttan
    I took my dad to Manhanttan to get a second opinion at Sloan Kettering and the docs there were amazing as were the staff. Eventually, my dad decided to get his treatment back home but the oncologist from Sloan actually has coordinated his chemo/radiation treatment in New Orleans.

    The group that he saw for the second opinion was:

    Oncologist was Yelena Y. Janjigian, MD http://www.mskcc.org/prg/prg/bios/1130.cfm
    Surgeon Raja M. Flores, MD http://www.mskcc.org/prg/prg/bios/639.cfm, and the
    Radioligist was Karen Goodman http://www.mskcc.org/prg/prg/bios/998.cfm.

    The Sloan website is http://www.appfa.org/.

    Let me know if you have any questions.

    Best,
    Cindy
  • Pghmomma
    Pghmomma Member Posts: 141
    #8
    unclaw2002 said:

    I took my dad to Manhanttan
    I took my dad to Manhanttan to get a second opinion at Sloan Kettering and the docs there were amazing as were the staff. Eventually, my dad decided to get his treatment back home but the oncologist from Sloan actually has coordinated his chemo/radiation treatment in New Orleans.

    The group that he saw for the second opinion was:

    Oncologist was Yelena Y. Janjigian, MD http://www.mskcc.org/prg/prg/bios/1130.cfm
    Surgeon Raja M. Flores, MD http://www.mskcc.org/prg/prg/bios/639.cfm, and the
    Radioligist was Karen Goodman http://www.mskcc.org/prg/prg/bios/998.cfm.

    The Sloan website is http://www.appfa.org/.

    Let me know if you have any questions.

    Best,
    Cindy

    I couldnt agree more
    Kelly,
    I have to agree with William and Kathy. My father was stage III. He had surgery from DR L and had four round of chemo and was cancer free, he passed away from ARSD. I have to say that DR. L saved my dads life and I will always think of him as the "MAN".

    dont give up hope go and Call Amiee, you can even say the Focer family also sent you there. They will take GREAT CARE of you guys.

    Tina
  • Kellyw229
    Kellyw229 Member Posts: 6
    #9
    Pghmomma said:

    I couldnt agree more
    Kelly,
    I have to agree with William and Kathy. My father was stage III. He had surgery from DR L and had four round of chemo and was cancer free, he passed away from ARSD. I have to say that DR. L saved my dads life and I will always think of him as the "MAN".

    dont give up hope go and Call Amiee, you can even say the Focer family also sent you there. They will take GREAT CARE of you guys.

    Tina

    Dr. L. sounds remarkable
    I've already started the legwork on getting another opinion done at Sloane-Kettering. The insurance company may give me a hard time because it's out-of-state, so that's just another battle. However, what I'd really like to do is get 2 opinions....one from Sloane-Kettering and the other from Dr. L's office. Has anyone on here had to battle their insurance company to get them to cover someone from out-of-state? It just seems ridiculous to me.

    I did find out that my husband's stage is: Stage IV: TXN1M1 with lymp node metastases in non-regional sites.

    ~Kelly

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