Need all the Help I can get (including Second Opinions)

Prismpunk
Prismpunk Member Posts: 25
edited March 2014 in Esophageal Cancer #1
Hi,

I am new to the board, but I need some help. I am as scared and distraught as many of the members here. My dad is suffering from Stage IV Esophageal Cancer with Mets to his liver. He has been going for chemotherapy at Sloan Kettering and so far the chemotherapy has not been working. They are saying it is Terminal and that he doesn't have much longer. If anyone can help me try something new or different I would greatly appreciate any advice. Dos anyone know of any places in the NYC area that I can go to for a second opinion?

My dad's case is a little different. His cancer was caught at Stage I in June of 2009. He was going for a procedure to remove his gall bladder and they found his cancer. He went for chemotherapy which shrank the tumor by 60%. In January of 2010 he went for surgery (I dont remember his name) which took out his stomach by 50% and also shrank his esophagus by 50%. He recuperated at Sloan Kettering for 2-3 months and then he was fine for 6 months until October of 2010 when they ran a CT scan and we were told his cancer was back in 2 lymph nodes and it spread to his liver. It was now Stage IV.

He is a little bit anemic. He now weighs 130 pounds and he has had to go for blood transfusions to get stronger. He is somewhat weak and lethargic.

Is there anything I can do? Are there any treatments or doctors I can speak to?

I am devastated, but I am trying to be as strong as I can for my family. Please help. Thank you very much!

Jonathan

Comments

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  • Prismpunk
    Prismpunk Member Posts: 25
    unknown said:

    This comment has been removed by the Moderator

    Thanks
    What is a Jtube? I do not believe that my dad has it right now. We have never heard of Therespheres before. How does it work?

    Right now their course of action is to provide him with hospice care because he is too weak to go for any more chemotherapy or radiation. My dad is turning 61 on Thursday. His chemo regimen was Fu5 and Cytoplastin I think. He had it 6 weeks on and then 6 weeks off. He went to speak to his doctor today and they said it was terminal. I dont know what to do.

    Would you recommend contacting other hospitals?

    Jonathan
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    Prismpunk said:

    Thanks
    What is a Jtube? I do not believe that my dad has it right now. We have never heard of Therespheres before. How does it work?

    Right now their course of action is to provide him with hospice care because he is too weak to go for any more chemotherapy or radiation. My dad is turning 61 on Thursday. His chemo regimen was Fu5 and Cytoplastin I think. He had it 6 weeks on and then 6 weeks off. He went to speak to his doctor today and they said it was terminal. I dont know what to do.

    Would you recommend contacting other hospitals?

    Jonathan

    Welcome
    Hello Jonathan and welcome to our discussion board. We welcome you dad as well. I was a caregiver for my dad. He passed from EC with mets to the liver in March 2010. Everyone is different. Everyone fights this cancer in a different way. Sloan is an excellent hospital. I always suggest that people get a 2nd opinion. I also agree with him getting a feeding tube. This will help him stay hydrated and gain some needed weight. Do not give up just because these drs. did. Are you and your dad able to travel to get a second opinion? You could go to another excellent hospital in Pittsburgh PA. There are many out there. These drs. at Sloan are saying terminal, but another dr. may not. There are also great places in Florida. They offer the Therespheares treatment for liver cancer. Take a few deep breaths, stay strong, do the best you can. Keep us up to date. We will be thinking of you and your dad, as well as praying.
    Tina in Va
  • Prismpunk
    Prismpunk Member Posts: 25

    Welcome
    Hello Jonathan and welcome to our discussion board. We welcome you dad as well. I was a caregiver for my dad. He passed from EC with mets to the liver in March 2010. Everyone is different. Everyone fights this cancer in a different way. Sloan is an excellent hospital. I always suggest that people get a 2nd opinion. I also agree with him getting a feeding tube. This will help him stay hydrated and gain some needed weight. Do not give up just because these drs. did. Are you and your dad able to travel to get a second opinion? You could go to another excellent hospital in Pittsburgh PA. There are many out there. These drs. at Sloan are saying terminal, but another dr. may not. There are also great places in Florida. They offer the Therespheares treatment for liver cancer. Take a few deep breaths, stay strong, do the best you can. Keep us up to date. We will be thinking of you and your dad, as well as praying.
    Tina in Va

    Second Opinion
    My dad right now is pretty weak. He currently weighs 130 pounds and his red blood cell count was so low they thought he was going to have a heart attack. He had 4 blood transfusions last week. I am not sure if he wants to travel to Pittsburgh or Florida. Are there any other hospitals in New York that I could take him to? I am praying for him everyday. I am only 24 years old. I graduated from college 2 years ago and never thought I would be dealing with this right now.

    Jonathan
  • Prismpunk
    Prismpunk Member Posts: 25

    Welcome
    Hello Jonathan and welcome to our discussion board. We welcome you dad as well. I was a caregiver for my dad. He passed from EC with mets to the liver in March 2010. Everyone is different. Everyone fights this cancer in a different way. Sloan is an excellent hospital. I always suggest that people get a 2nd opinion. I also agree with him getting a feeding tube. This will help him stay hydrated and gain some needed weight. Do not give up just because these drs. did. Are you and your dad able to travel to get a second opinion? You could go to another excellent hospital in Pittsburgh PA. There are many out there. These drs. at Sloan are saying terminal, but another dr. may not. There are also great places in Florida. They offer the Therespheares treatment for liver cancer. Take a few deep breaths, stay strong, do the best you can. Keep us up to date. We will be thinking of you and your dad, as well as praying.
    Tina in Va

    Second Opinion
    My dad right now is pretty weak. He currently weighs 130 pounds and his red blood cell count was so low they thought he was going to have a heart attack. He had 4 blood transfusions last week. I am not sure if he wants to travel to Pittsburgh or Florida. Are there any other hospitals in New York that I could take him to? I am praying for him everyday. I am only 24 years old. I graduated from college 2 years ago and never thought I would be dealing with this right now.

    Jonathan
  • MRapp226
    MRapp226 Member Posts: 44
    Prismpunk said:

    Second Opinion
    My dad right now is pretty weak. He currently weighs 130 pounds and his red blood cell count was so low they thought he was going to have a heart attack. He had 4 blood transfusions last week. I am not sure if he wants to travel to Pittsburgh or Florida. Are there any other hospitals in New York that I could take him to? I am praying for him everyday. I am only 24 years old. I graduated from college 2 years ago and never thought I would be dealing with this right now.

    Jonathan

    Robert Wood Johnson - Cancer Institute in NJ
    Please check out RWJ Cancer Institute in New Brunswick, NJ. Right off NJ Turnpike - Exit 9... VERY easy to get to.

    Here is a link to their web-site:

    http://www.cinj.org/

    Call Dr Salwitz... He was my dad's doctor and he is the most compassionate oncologist I have ever met!!!!!!!!

    James Salwitz, MD
    Central Jersey Oncology Center
    205 Easton Avenue
    New Brunswick, NJ 08901
    Phone: (732) 828-9570
    Fax: (732) 828-7638

    Primary Office)Brier Hill Court
    Bldg J2
    East Brunswick, NJ 08816
    Phone: (732) 390-7750
    Fax: (732) 390-7725
    (Secondary Office)

    Dr. Langenfeld is thoracic surgeon...

    John Langenfeld, MD
    UMDNJ-RWJ Medical School
    125 Paterson Street - MEB 534
    New Brunswick, NJ 08901
    Phone: (732) 235-7802
    Fax: (732) 235-8150

    Please keep us posted and please call these doctors!!!!!!!!! They may be able to help and are not too faraway.

    best wishes to you, your father and your family,
    -Melissa
  • Prismpunk
    Prismpunk Member Posts: 25
    MRapp226 said:

    Robert Wood Johnson - Cancer Institute in NJ
    Please check out RWJ Cancer Institute in New Brunswick, NJ. Right off NJ Turnpike - Exit 9... VERY easy to get to.

    Here is a link to their web-site:

    http://www.cinj.org/

    Call Dr Salwitz... He was my dad's doctor and he is the most compassionate oncologist I have ever met!!!!!!!!

    James Salwitz, MD
    Central Jersey Oncology Center
    205 Easton Avenue
    New Brunswick, NJ 08901
    Phone: (732) 828-9570
    Fax: (732) 828-7638

    Primary Office)Brier Hill Court
    Bldg J2
    East Brunswick, NJ 08816
    Phone: (732) 390-7750
    Fax: (732) 390-7725
    (Secondary Office)

    Dr. Langenfeld is thoracic surgeon...

    John Langenfeld, MD
    UMDNJ-RWJ Medical School
    125 Paterson Street - MEB 534
    New Brunswick, NJ 08901
    Phone: (732) 235-7802
    Fax: (732) 235-8150

    Please keep us posted and please call these doctors!!!!!!!!! They may be able to help and are not too faraway.

    best wishes to you, your father and your family,
    -Melissa

    Dr Salwitz
    I spoke to Dr. Salwitz and he was very helpful, but I couldn't find any hope for my dad. Dr. Salwitz was very compassionate and I would recommend him to others.

    I am trying to get in touch with Dr. Langenfeld as well. I hope I am not grasping at straws. I would do anything to help my dad survive this disease.

    This is so difficult.
  • ArchTB
    ArchTB Member Posts: 150
    Prismpunk said:

    Second Opinion
    My dad right now is pretty weak. He currently weighs 130 pounds and his red blood cell count was so low they thought he was going to have a heart attack. He had 4 blood transfusions last week. I am not sure if he wants to travel to Pittsburgh or Florida. Are there any other hospitals in New York that I could take him to? I am praying for him everyday. I am only 24 years old. I graduated from college 2 years ago and never thought I would be dealing with this right now.

    Jonathan

    Columbia?
    Hi Jonathan,

    Before moving to Sloan Kettering, we were directed to Columbia Prespitarian in uptown as they have a pretty good gastrointerology/cancer department. You may try them. But my understanding (and I might be wrong) is that they specialize on earlier stages.

    Olya
  • sandy1943
    sandy1943 Member Posts: 824
    Prismpunk said:

    Dr Salwitz
    I spoke to Dr. Salwitz and he was very helpful, but I couldn't find any hope for my dad. Dr. Salwitz was very compassionate and I would recommend him to others.

    I am trying to get in touch with Dr. Langenfeld as well. I hope I am not grasping at straws. I would do anything to help my dad survive this disease.

    This is so difficult.

    Hi, Keep grasping at
    Hi, Keep grasping at anything, until you know all there is to know and you've done all you can do. I would be doing the same thing. There is so much to learn about this disease. Praying you will have piece soon, knowing for sure that the drs have done all that can be done.
    Praying for God to give your and your dad comfort to face the days ahead, Sandra