Vanderbilt

lostit2003
lostit2003 Member Posts: 53
in Colorectal Cancer #1
My husband is stage IV CC. He has done folfox w/avastin which work well then this year he started Irinotecan with Erbitux. It is not working at all. His tumors have grown and his CEA numbers are up they are 343, up from 202 when he started. He's not a candidate for liver resection (too many too big). We have discussed TACE, Sir-spheres, RFA and Arterial chemo with his Dr and he doesn't think he is a candidate for any of those either.

He is referring us to Vanderbilt. (We live in West Tennessee) He hopes Randy can get into a clinic trial.

I wanted to know if any of you go to or have gone to Vandy. Tell me about the Dr's, what do we need to know? Are there any clinic trials going on there? I couldn't find any information on any online.

Since I consider you guys the experts please tell me anything I should know. Please give me hope.


Thanks,

Tina

Comments

  • amcp
    amcp Member Posts: 251 Member
    #2
    Been There
    Tina, my husband also had CC and we too were referred to Vandy and they told us for 2 years he was not a candidate for liver resection ...we went there and saw a Dr Laura Goff who is amazing. She sent us to Dr Parikh who did liver resection. We also saw a Dr Lambright. My husband was given another two years because of them. He also went through 3 phase 1 clinic trials. I also have information on where you can stay while there...Memorial Hope Lodge...you have to be referred by your dr but it is free and so nice. I would love to talk to you. I will be glad to call you if you will email me your phone number to annaproctor60@yahoo.com. If I can be of any help. I will...look forward to hearing from you.
    In my prayers,
    Anna
  • geotina
    geotina Member Posts: 2,111 Member
    #3
    Tina:
    Send a pm (personal message) to Buzzard (Buzz). He has been treated at Vanderbilt and pretty much knows the place and doctors.

    As far as clinical trials, go to "clinicalconnection.com". It is a database for all clinical trials. You can search all U.S. Clinical Trials and studies going on. It is pretty easy reading as far as what the clinical trial is and how it would apply to you and all the contact information is there.

    Lisa42 can give you information on Dr. Lenz, the guru of colorectal cancer. Can't remember which site but it is either Fight Colorectal Cancer or Colon Cancer Alliance, Colon Cancer Coalition that has info on Dr. Lenz and even has articles/stuff "From the desk of Dr. Lenz". If your back is against the wall I'd look into Dr. Lenz, contacting him can't hurt, even if it is in the form of an e-mail or call. Dr. Lenz is in California.

    Vanderbuilt is one of the top hospitals for treatment and you certainly can't go wrong going there but in the meantime, check out Dr. Lenz. Some have been treated at Sloan in New York with the HAI pump for liver metastasis. Start a thread on Sloan/HAI Pump and see what information the group has for you. Sloan is #2 in the country and they may have something different to offer you.



    Take care - Tina
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #4
    geotina said:

    Tina:
    Send a pm (personal message) to Buzzard (Buzz). He has been treated at Vanderbilt and pretty much knows the place and doctors.

    As far as clinical trials, go to "clinicalconnection.com". It is a database for all clinical trials. You can search all U.S. Clinical Trials and studies going on. It is pretty easy reading as far as what the clinical trial is and how it would apply to you and all the contact information is there.

    Lisa42 can give you information on Dr. Lenz, the guru of colorectal cancer. Can't remember which site but it is either Fight Colorectal Cancer or Colon Cancer Alliance, Colon Cancer Coalition that has info on Dr. Lenz and even has articles/stuff "From the desk of Dr. Lenz". If your back is against the wall I'd look into Dr. Lenz, contacting him can't hurt, even if it is in the form of an e-mail or call. Dr. Lenz is in California.

    Vanderbuilt is one of the top hospitals for treatment and you certainly can't go wrong going there but in the meantime, check out Dr. Lenz. Some have been treated at Sloan in New York with the HAI pump for liver metastasis. Start a thread on Sloan/HAI Pump and see what information the group has for you. Sloan is #2 in the country and they may have something different to offer you.



    Take care - Tina

    If you would like me to do the finding info for you.............
    I would be more than happy to do so...We just got back from Vandy Tuesday(for my wifes back surgery though). I have been there twice, once for rectal surgery removal and sewn shut then met to the lung , had wedge resection and all clear margins, no nodes involved...I can give you names, numbers, directions, surgeons, Oncologists...All of my Oncology is there now as well as both of my surgeries...It is 14th in the nation and is very well known for its trials and is also a teaching hospital. Lots of up and comers there with great minds and also common sense to boot. Their hospitality is numero uno. We stayed at another hotel so that we didn't take up room at Hope Lodge for others and almost all of the hotels there give a large discount on all of there rooms...Holiday Inn by Cetennial was $148, we got it for $97...I have everything you need to get around down there, all you have to do is ask. Its the least I can do..............buzz
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #5
    Tina
    I am treated at Memorial Sloan Kettering in NYC. They have a treatment option called Hepatic Arterial Infusion (HAI) which is a pump implanted directly into the abdomen and routed to the hepatic artery. Chemotherapy is routed directly to the liver via this pump. I have met numerous people from around the country who come to NYC to be treated. Many were previously inoperable or had no response to systemic chemotherapy. After HAI treatment many went on to liver resection. A good friend of mine has been NED (no evidence of disease) for 1 year since his treatment and his liver was covered with mets initially.

    Review http://www.jnccn.org/content/8/5/507.extract. You can't view the entire study but you will find the name of my oncologist at MSK who has been a pioneer in this treatment option. If you can't reach MSK I know that MD Anderson also implants HAI pumps, although not as frequently.

    I had an HAI pump installed after liver resection and so far (knock on wood) I am 27 months NED.

    If you have any questions, please email me.

    Good luck!
    Amy
  • lostit2003
    lostit2003 Member Posts: 53
    #6
    mom_2_3 said:

    Tina
    I am treated at Memorial Sloan Kettering in NYC. They have a treatment option called Hepatic Arterial Infusion (HAI) which is a pump implanted directly into the abdomen and routed to the hepatic artery. Chemotherapy is routed directly to the liver via this pump. I have met numerous people from around the country who come to NYC to be treated. Many were previously inoperable or had no response to systemic chemotherapy. After HAI treatment many went on to liver resection. A good friend of mine has been NED (no evidence of disease) for 1 year since his treatment and his liver was covered with mets initially.

    Review http://www.jnccn.org/content/8/5/507.extract. You can't view the entire study but you will find the name of my oncologist at MSK who has been a pioneer in this treatment option. If you can't reach MSK I know that MD Anderson also implants HAI pumps, although not as frequently.

    I had an HAI pump installed after liver resection and so far (knock on wood) I am 27 months NED.

    If you have any questions, please email me.

    Good luck!
    Amy

    Thank you
    Thank you all so much. I will be glad to get to Vandy and see what options they think he has. I hope we can get an appointment soon, I'm not very good at waiting.


    geotina, I love your picture LOL, too cute

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