My father

Robyn3
Robyn3 Member Posts: 5
in Esophageal Cancer #1
My father was recently diagnosed with Stage 4 esophageal cancer with mets to retroperitoneal lymph nodes only. Not a surgical candidate. He started a clinical trial at the Cleveland Clinic. Does anyone have experience with the Cleveland Clinic? He is happy in Cleveland and I'm not sure about moving him to another city to seek treatment. I don't know how experienced the Cleveland Clinic is with treatment for this particular beast.

Robyn

Comments

  • ritawaite13
    ritawaite13 Member Posts: 236
    #2
    Hi Robin
    I'm sorry to say I know nothing about the Cleveland Clinic but I just wanted to welcome you to this site. This is the best place for guidance and support you will find anywhere! The people on here are absolutely amazing! So knowledgable and compassionate. You will be welcomed with open arms. Ask all the questions Robin and you will get answers. As you start your research about EC don't let the numbers scare you. I don't want to give you any false hope but there are stage IV people on here who are fighting with every ounce of strength they can muster and doing okay. At least one of the guys (Eric) has opted for no chemo or radiation and he's appreciating every day, keeping pain under control and enjoying time with his wife.
    No cancer is a good cancer but EC is an especially nasty one so be prepared for a roller coaster ride with lots of ups and downs. I know others will be signing on shortly to welcome you Robin. I hope you are geographically close to your dad because the information you will gain here will be so helpful for everyone.
    Hugs to you,
    Rita
  • Daisylin
    Daisylin Member Posts: 365
    #3
    ritawaite13 said:

    Hi Robin
    I'm sorry to say I know nothing about the Cleveland Clinic but I just wanted to welcome you to this site. This is the best place for guidance and support you will find anywhere! The people on here are absolutely amazing! So knowledgable and compassionate. You will be welcomed with open arms. Ask all the questions Robin and you will get answers. As you start your research about EC don't let the numbers scare you. I don't want to give you any false hope but there are stage IV people on here who are fighting with every ounce of strength they can muster and doing okay. At least one of the guys (Eric) has opted for no chemo or radiation and he's appreciating every day, keeping pain under control and enjoying time with his wife.
    No cancer is a good cancer but EC is an especially nasty one so be prepared for a roller coaster ride with lots of ups and downs. I know others will be signing on shortly to welcome you Robin. I hope you are geographically close to your dad because the information you will gain here will be so helpful for everyone.
    Hugs to you,
    Rita

    Hi Robyn
    I also don't know anything about Cleveland medical centres, but I wanted to welcome you here. As Rita (above) mentioned, this is the best place to come for advice, support, tips and a wealth of information. There are quite a few stage iv's posting here, and we are all here to help.

    best of luck,
    Chantal
  • paul61
    paul61 Member Posts: 1,392 Member
    #4
    Welcome to our group
    Robyn,

    Cleveland Clinic certainly has an excellent reputation as a diagnostic and treatment center. They tend to take a conservative approach when staging cancer, particularly when considering surgical options.

    Have you considered a second opinion? There are new staging guidelines for esophageal cancer and involvement of lymph nodes not adjacent to the primary tumor is not considered as grave from a staging perspective as it used to be. I understand retroperitoneal nodes are at the back of the abdominal area, but you did not mention any other major organ involvement so I can't help but wonder what the full staging assessment might be.

    Did they give you a Tn Nn Mn description of your father's staging? Is there any other medical reason other than staging that would make your father "not a surgical candidate?"

    If you can share more information with us we may be able to make some helpful suggestions.

    How old is your father?
    What what his full pathological staging?
    Does he have any other major medical issues?
    Where are you located?
    What is the current treatment plan in Cleveland?

    There is a wide range of experience here so the more information we have the better suggestions we can make.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • Rick0311
    Rick0311 Member Posts: 38
    #5
    Welcome Robyn
    Welcome Robyn

    Sorry I don’t know anything about the Cleveland clinic but I wanted to welcome you and let you know I will keep you and your family in my thoughts and prayers.

    Richard (Rick) Watson
    Neoga, Illinois

    DX – 0411
    EC – T2N2M0
    Chemo – Cisplatin, four treatments
    5FU, four treatments, five days times 24 hours each time
    MIE – 083111
    Barnes Hospital, St Louis
    Dr Brian Meyer
    NED
  • Proactive Daughter
    Proactive Daughter Member Posts: 55
    #6
    Hi Robyn
    Hello Robyn, I'm sorry that you are here, but welcome you with open arms. I don't know much about EC as I am a newcomer as well, but soon you will hear from the great pioneers of this forum who have lots of wisdom to share.

    Thinking about you and your dad,

    sincerely,
    Jennifer
  • Robyn3
    Robyn3 Member Posts: 5
    #7
    paul61 said:

    Welcome to our group
    Robyn,

    Cleveland Clinic certainly has an excellent reputation as a diagnostic and treatment center. They tend to take a conservative approach when staging cancer, particularly when considering surgical options.

    Have you considered a second opinion? There are new staging guidelines for esophageal cancer and involvement of lymph nodes not adjacent to the primary tumor is not considered as grave from a staging perspective as it used to be. I understand retroperitoneal nodes are at the back of the abdominal area, but you did not mention any other major organ involvement so I can't help but wonder what the full staging assessment might be.

    Did they give you a Tn Nn Mn description of your father's staging? Is there any other medical reason other than staging that would make your father "not a surgical candidate?"

    If you can share more information with us we may be able to make some helpful suggestions.

    How old is your father?
    What what his full pathological staging?
    Does he have any other major medical issues?
    Where are you located?
    What is the current treatment plan in Cleveland?

    There is a wide range of experience here so the more information we have the better suggestions we can make.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    My Dad
    Sadly I live across the country from my father in Arizona, but we are very close in spirit. I flew him out to me for the weekend and we have had a wonderful time. We did end up in an ER for diarrhea and dehydration but he's doing OK. He is 65 and healthy, no organ involvement, not a smoker or drinker and no reflux. He only has a few retroperitoneal node involvement which is in the back. I will find out the exact staging for you. He is on cisplatin, paclotaxil and lapatinib in a clinical trial. I'm sure I spelled those all wrong. He goes for his second round on thursday if his diarrhea is controllable.

    Are there any Stage 4 people out there surviving? Anyone past 2 or 3 years? I feel like we were just handed a death sentence. Where are the miracles here?

    R
  • hdwchisholm
    hdwchisholm Member Posts: 20
    #8
    Robyn3 said:

    My Dad
    Sadly I live across the country from my father in Arizona, but we are very close in spirit. I flew him out to me for the weekend and we have had a wonderful time. We did end up in an ER for diarrhea and dehydration but he's doing OK. He is 65 and healthy, no organ involvement, not a smoker or drinker and no reflux. He only has a few retroperitoneal node involvement which is in the back. I will find out the exact staging for you. He is on cisplatin, paclotaxil and lapatinib in a clinical trial. I'm sure I spelled those all wrong. He goes for his second round on thursday if his diarrhea is controllable.

    Are there any Stage 4 people out there surviving? Anyone past 2 or 3 years? I feel like we were just handed a death sentence. Where are the miracles here?

    R

    Cleveland CLinic
    Robyn, I live in Cleveland and know of some friends that are using CC for thyroid cancer [just starting treatment] and breast cancer. They are please with CC and their doctors. Who are his doctors?
    I am a stage 3 throat cancer survivor . I had my treatments [surgery (April 2011), 2 chemos and 30 radiation sessions (June 2011 thru July 2011)] at University Hospitals [UH] Seidman Cancer Center in Cleveland. I was very pleased with Dr Zender [ENT], Dr Yao [radiation], and Dr Savvides [chemo]. These are all different from esophageal. Another friend has reflux disease though I do not know if it is cancerous. Dr Anders at UH is his surgeon. I have sent an email to him to get his opinion on Anders.
    At CC, I have heard that Dr Rice is the "best" thoracic surgeon in the area. Thoracic though covers the whole chest area. I do not know how much Rice knows about the esophagus. I have heard from doctor and nurse friends that Rice's bedside manner can be a little rough though he is one of the best thoracic surgeons.
    My son has a caustic substance injury to his esophagus and we are taking him to UPMC [University of Pittsburgh Medical Center]. Dr Luketich of UPMC pioneered minimally invasive esophageal surgery and has done over 1000 operations. He did a room exam/visit last Tuesday. This Thursday Luketich will do an endoscopic and laprascopic exam on my son. Then probably late February L will reconfigure the stomach into a "new" esophagus [we pray and hope]. Does he have any friends in Cleveland that can help him? Can you find out if CC has a support group? Keep positive and try to keep smiling. My prayers and thoughts are with you and your dad.
  • ECson
    ECson Member Posts: 26
    #9
    Robyn3 said:

    My Dad
    Sadly I live across the country from my father in Arizona, but we are very close in spirit. I flew him out to me for the weekend and we have had a wonderful time. We did end up in an ER for diarrhea and dehydration but he's doing OK. He is 65 and healthy, no organ involvement, not a smoker or drinker and no reflux. He only has a few retroperitoneal node involvement which is in the back. I will find out the exact staging for you. He is on cisplatin, paclotaxil and lapatinib in a clinical trial. I'm sure I spelled those all wrong. He goes for his second round on thursday if his diarrhea is controllable.

    Are there any Stage 4 people out there surviving? Anyone past 2 or 3 years? I feel like we were just handed a death sentence. Where are the miracles here?

    R

    Stage 4's
    Robyn, my Dad is a Stage IV guy too. Main tumor is from clavicle to stomach with celiac nodes and cervical nodes by clavicle with no mets to organs. We started Cisplatin, Taxotere, 5FU 48 hours continous pump on November 30th. On January 11th we had follow up PET that showed "no metastatic cancer growth"!!! His PET was clear of cancer and was declared in clincally complete remission. Now our onco has told us he hopes that could be 3-5 years, I am hopeful but not naive to think that it could be shorter than that. He is now on a 4 week break before beginning rads+Cisplatin and 5 FU 5 days a week for 5.5 weeks. Dad has GAINED 20 pounds on chemo!!!!
  • Robyn3
    Robyn3 Member Posts: 5
    #10
    hdwchisholm said:

    Cleveland CLinic
    Robyn, I live in Cleveland and know of some friends that are using CC for thyroid cancer [just starting treatment] and breast cancer. They are please with CC and their doctors. Who are his doctors?
    I am a stage 3 throat cancer survivor . I had my treatments [surgery (April 2011), 2 chemos and 30 radiation sessions (June 2011 thru July 2011)] at University Hospitals [UH] Seidman Cancer Center in Cleveland. I was very pleased with Dr Zender [ENT], Dr Yao [radiation], and Dr Savvides [chemo]. These are all different from esophageal. Another friend has reflux disease though I do not know if it is cancerous. Dr Anders at UH is his surgeon. I have sent an email to him to get his opinion on Anders.
    At CC, I have heard that Dr Rice is the "best" thoracic surgeon in the area. Thoracic though covers the whole chest area. I do not know how much Rice knows about the esophagus. I have heard from doctor and nurse friends that Rice's bedside manner can be a little rough though he is one of the best thoracic surgeons.
    My son has a caustic substance injury to his esophagus and we are taking him to UPMC [University of Pittsburgh Medical Center]. Dr Luketich of UPMC pioneered minimally invasive esophageal surgery and has done over 1000 operations. He did a room exam/visit last Tuesday. This Thursday Luketich will do an endoscopic and laprascopic exam on my son. Then probably late February L will reconfigure the stomach into a "new" esophagus [we pray and hope]. Does he have any friends in Cleveland that can help him? Can you find out if CC has a support group? Keep positive and try to keep smiling. My prayers and thoughts are with you and your dad.

    Thank you for thinking of
    Thank you for thinking of me. I hope your son does well. It seems that Dr. Luketich is thought of very highly on this site. My Dad gets a second opinion at UH on Friday and I will find out who the appointment is with. I'm sure its with their Esophageal Oncologist, because it seems to be its own specialty. I'm trying to stay positive. If love could cure my Dad I think I could be more helpful.
  • Robyn3
    Robyn3 Member Posts: 5
    #11
    hdwchisholm said:

    Cleveland CLinic
    Robyn, I live in Cleveland and know of some friends that are using CC for thyroid cancer [just starting treatment] and breast cancer. They are please with CC and their doctors. Who are his doctors?
    I am a stage 3 throat cancer survivor . I had my treatments [surgery (April 2011), 2 chemos and 30 radiation sessions (June 2011 thru July 2011)] at University Hospitals [UH] Seidman Cancer Center in Cleveland. I was very pleased with Dr Zender [ENT], Dr Yao [radiation], and Dr Savvides [chemo]. These are all different from esophageal. Another friend has reflux disease though I do not know if it is cancerous. Dr Anders at UH is his surgeon. I have sent an email to him to get his opinion on Anders.
    At CC, I have heard that Dr Rice is the "best" thoracic surgeon in the area. Thoracic though covers the whole chest area. I do not know how much Rice knows about the esophagus. I have heard from doctor and nurse friends that Rice's bedside manner can be a little rough though he is one of the best thoracic surgeons.
    My son has a caustic substance injury to his esophagus and we are taking him to UPMC [University of Pittsburgh Medical Center]. Dr Luketich of UPMC pioneered minimally invasive esophageal surgery and has done over 1000 operations. He did a room exam/visit last Tuesday. This Thursday Luketich will do an endoscopic and laprascopic exam on my son. Then probably late February L will reconfigure the stomach into a "new" esophagus [we pray and hope]. Does he have any friends in Cleveland that can help him? Can you find out if CC has a support group? Keep positive and try to keep smiling. My prayers and thoughts are with you and your dad.

    Thank you for thinking of
    Thank you for thinking of me. I hope your son does well. It seems that Dr. Luketich is thought of very highly on this site. My Dad gets a second opinion at UH on Friday and I will find out who the appointment is with. I'm sure its with their Esophageal Oncologist, because it seems to be its own specialty. I'm trying to stay positive. If love could cure my Dad I think I could be more helpful.
  • Robyn3
    Robyn3 Member Posts: 5
    #12
    ECson said:

    Stage 4's
    Robyn, my Dad is a Stage IV guy too. Main tumor is from clavicle to stomach with celiac nodes and cervical nodes by clavicle with no mets to organs. We started Cisplatin, Taxotere, 5FU 48 hours continous pump on November 30th. On January 11th we had follow up PET that showed "no metastatic cancer growth"!!! His PET was clear of cancer and was declared in clincally complete remission. Now our onco has told us he hopes that could be 3-5 years, I am hopeful but not naive to think that it could be shorter than that. He is now on a 4 week break before beginning rads+Cisplatin and 5 FU 5 days a week for 5.5 weeks. Dad has GAINED 20 pounds on chemo!!!!

    Really? Is this true? Where is he located?
  • hdwchisholm
    hdwchisholm Member Posts: 20
    #13
    Robyn3 said:

    Thank you for thinking of
    Thank you for thinking of me. I hope your son does well. It seems that Dr. Luketich is thought of very highly on this site. My Dad gets a second opinion at UH on Friday and I will find out who the appointment is with. I'm sure its with their Esophageal Oncologist, because it seems to be its own specialty. I'm trying to stay positive. If love could cure my Dad I think I could be more helpful.

    UH 2nd opinion
    Robyn, Let me know who the UH doctor is when you find out. ALso let me know who the Clinic doctor is. I will see what I can find out. My friend, with Baretts, is seeing Dr Onders at UH [not Anders] and likes him. I may not be able to respond until this weekend as I hope to be returning from Pittsburgh with my son on Friday. Best, Homer

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