Questions regarding Sloan or Vanderbilt

JONinAPPLEVALLEY
JONinAPPLEVALLEY Member Posts: 17
edited March 2014 in Colorectal Cancer #1
Hello. I was diagnosed with stage IV cancer in January of 2007 (at the age of 34). Over the last 2 1/2 years, I have been on a number of different chemo regimens and have had two liver resections (actually, the surgeon just removed two small segments each time). Our family has certainly gone through a trmendous amount of trials and tribulations. We were fotunate enough to get pregnant with twins in 2007 (although we used invitro, it was certainly a miracle that we were able to conceive). Unfortunately, we lost our twins (Jude and Eva)at 20 weeks. Before we even had a chance to deal with the loss of our children, we were told that the cancer had returned back in my liver. While going through extensive chemo, we once again tried invitro and God blessed us with a baby girl. Although we knew that we were pregnant during my second liver resection (segmentectomy), we did not tell anyone out of feer that we might miscarry again. I completed all of my "mop up" chemo in late December of 2008 and my wife gave birth to our beautiful baby girl on February 5th of 2009. Two days after we brought our baby girl home from the hospital, a PET-CT scan discovered another spot on my liver. This spot was treated with percataneous RFA. During a follow up scan a month later, they found another small spot near the same location. Once again, they treated this with RFA. After completing chemo last month, the doctor wanted to do one follow up PET-CT scan to make sure that everything was alright. Unfortunately, I was just told today that I have 2 small spots again on the right lobe. What is even more disturbing is that I have 2 lymphnodes right outside the liver that are now impacted as well. I want to be extremely aggressive in going after this. Since my wife's father sits on the board at the Minnesota Medical Association, he frequently hears about some of the new and exciting opportunites in treating cancer. He has specifically told me that Sloan and Vanderbilt are doind some really cool stuff. That said, I have just a couple of questions:

1. Has anyone gone to Sloan? What was your experience like? Did you use a hepatic pump? I understand that Sloan is one of the few hospitals that will use this. Do you happen to have the name of an oncologist and liver surgeon there?

2. Has anyone visited Vanderbilt? Do you happen to have any contact info for an oncologist and liver surgeon there? Do they utilize the hepatic pump as well?

Thanks guys,
Jon

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Jon and Vanderbilt......
    I went to Vandy for my colorectal surgery and there was a team of Drs who took great care of me. It is a teaching hospital along with being a clinical trial hospital. It is considered the 14th best hospital in the nation MD Anderson being #1. I will pm you the # and you may asked to be transferred to the correct surgeon or oncologist. You will probably speak with the Nurse Practioner of the colorectal unit but she will transfer you to who you need to speak with. It is by far an outstanding hospital with everyone from the top biomedical engineers to the janitors wear a constant smile on their face and are very congenial...along with being great in their work.....Good Luck to you in your journey, Clift
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #3
    Memorial-Sloan Kettering
    Jon,

    I was diagnosed in November 2008 during the scheduled c-section of our third child. I had 5 bilobar liver mets. In February of this year I had my liver resection and had an HAI pump installed. Since then I have been doing adjuvant therapy (chemo in both the HAI pump as well as systemic). I will complete my last treatment early November (God willing).

    The HAI treatment consists of having FUDR put into the pump every 5 weeks. Refer to this thread (http://csn.cancer.org/node/174161) for more information regarding my experience with the HAI pump. Additionally, there are others on the board (Phillieg and ADker) who have also had the pump therapy.

    I do go to Memorial-Sloan Kettering and I do love the facility. The doctors and nurses are at the top of their game and everyone on staff knows your name and even though it's a larger facility it feels very personal. I highly recommend Sloan Kettering. I meet people in the waiting room (one floor is dedicated to colon cancer and melanoma) that travel from all over the country (even world) to go there for treatment. My oncologist is http://www.mskcc.org/prg/prg/bios/123.cfm. She is considered the "queen" of the HAI therapy. My liver surgeon was http://www.mskcc.org/prg/prg/bios/708.cfm. He was a phenomenal surgery and one day years from now I hope to tell him as well as my oncologist "thank you" for saving my life.

    I have read studies that indicate that the HAI pump is very successful in both getting patients to operable status as well as preventing additional liver mets. My surgeon told me that liver recurrence was 50% likely but with the HAI therapy it was only 30% likely. I will take that. As of right now I have been NED for almost 7 months. My next scan is in November which will be 9 months from my surgery.

    I know not many places do the pump implantation as it truly requires a skilled liver surgeon to do the placement. You want someone doing it who has done hundreds before. I believe that MSK does on the order of 200-300 per year. If you have any other questions about MSK or the pump, PM me or post here. Philieg and ADker are also patients at MSK. I am sure they will post later.

    All the best,
    Amy
  • ADKer
    ADKer Member Posts: 147
    #4
    mom_2_3 said:

    Memorial-Sloan Kettering
    Jon,

    I was diagnosed in November 2008 during the scheduled c-section of our third child. I had 5 bilobar liver mets. In February of this year I had my liver resection and had an HAI pump installed. Since then I have been doing adjuvant therapy (chemo in both the HAI pump as well as systemic). I will complete my last treatment early November (God willing).

    The HAI treatment consists of having FUDR put into the pump every 5 weeks. Refer to this thread (http://csn.cancer.org/node/174161) for more information regarding my experience with the HAI pump. Additionally, there are others on the board (Phillieg and ADker) who have also had the pump therapy.

    I do go to Memorial-Sloan Kettering and I do love the facility. The doctors and nurses are at the top of their game and everyone on staff knows your name and even though it's a larger facility it feels very personal. I highly recommend Sloan Kettering. I meet people in the waiting room (one floor is dedicated to colon cancer and melanoma) that travel from all over the country (even world) to go there for treatment. My oncologist is http://www.mskcc.org/prg/prg/bios/123.cfm. She is considered the "queen" of the HAI therapy. My liver surgeon was http://www.mskcc.org/prg/prg/bios/708.cfm. He was a phenomenal surgery and one day years from now I hope to tell him as well as my oncologist "thank you" for saving my life.

    I have read studies that indicate that the HAI pump is very successful in both getting patients to operable status as well as preventing additional liver mets. My surgeon told me that liver recurrence was 50% likely but with the HAI therapy it was only 30% likely. I will take that. As of right now I have been NED for almost 7 months. My next scan is in November which will be 9 months from my surgery.

    I know not many places do the pump implantation as it truly requires a skilled liver surgeon to do the placement. You want someone doing it who has done hundreds before. I believe that MSK does on the order of 200-300 per year. If you have any other questions about MSK or the pump, PM me or post here. Philieg and ADker are also patients at MSK. I am sure they will post later.

    All the best,
    Amy

    Sloan-Kettering
    As Amy indicated, I am also treated at Sloan-Kettering. I travel far (5 hours) and only go to Sloan every 4 weeks, plus for CT scans, etc. I had liver mets far more extensive than yours at diagnosis. An HAI pump was implanted at the same time as my colon resection. Together with aggressive systemic chemo, my liver became resectable within 6 months.

    The HAI pump is of course more effective before your tumors become resistant to chemo. It also may not be offered to you if the cancer metastasizes further. With your history of repeated recurrence in the liver, I really believe that it would be a great idea for you to do a full consult at Sloan, particularly since systemic chemo does not seem to have gotten the job done for you.

    I do not have the same warm fuzzies as Amy about my experience at Sloan, probably because I am not there as often and I was not referred by a friend of the oncologist. Communication is difficult. I spend a fair amount of time obtaining copies of the oncologist's office notes so that I will know what she is thinking and what her plan is. I need the help of my brother who is a doctor to get copies of radiologists' reports of my scans before my appointment so that I can understand the 2-3 sentences that usually constitute my conversations with my oncologist. While there are no negative statements, the closest thing to an encouraging statement that anyone at Sloan has made to me was earlier this year, upon the discovery of a met, that at least things were much better than a year ago. I try to find ways to work around the impersonal treatment and inconveniences. I look elsewhere for emotional support. I firmly believe that I would be dead or dying without the medical care that I have received there. I don't really need warm fuzzies. I need top-notch medical care that is particularly well-suited to my circumstances and that is what I receive from Sloan-Kettering.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    mom_2_3 said:

    Memorial-Sloan Kettering
    Jon,

    I was diagnosed in November 2008 during the scheduled c-section of our third child. I had 5 bilobar liver mets. In February of this year I had my liver resection and had an HAI pump installed. Since then I have been doing adjuvant therapy (chemo in both the HAI pump as well as systemic). I will complete my last treatment early November (God willing).

    The HAI treatment consists of having FUDR put into the pump every 5 weeks. Refer to this thread (http://csn.cancer.org/node/174161) for more information regarding my experience with the HAI pump. Additionally, there are others on the board (Phillieg and ADker) who have also had the pump therapy.

    I do go to Memorial-Sloan Kettering and I do love the facility. The doctors and nurses are at the top of their game and everyone on staff knows your name and even though it's a larger facility it feels very personal. I highly recommend Sloan Kettering. I meet people in the waiting room (one floor is dedicated to colon cancer and melanoma) that travel from all over the country (even world) to go there for treatment. My oncologist is http://www.mskcc.org/prg/prg/bios/123.cfm. She is considered the "queen" of the HAI therapy. My liver surgeon was http://www.mskcc.org/prg/prg/bios/708.cfm. He was a phenomenal surgery and one day years from now I hope to tell him as well as my oncologist "thank you" for saving my life.

    I have read studies that indicate that the HAI pump is very successful in both getting patients to operable status as well as preventing additional liver mets. My surgeon told me that liver recurrence was 50% likely but with the HAI therapy it was only 30% likely. I will take that. As of right now I have been NED for almost 7 months. My next scan is in November which will be 9 months from my surgery.

    I know not many places do the pump implantation as it truly requires a skilled liver surgeon to do the placement. You want someone doing it who has done hundreds before. I believe that MSK does on the order of 200-300 per year. If you have any other questions about MSK or the pump, PM me or post here. Philieg and ADker are also patients at MSK. I am sure they will post later.

    All the best,
    Amy

    My Liver Guy
    I had this guy for my liver surgeon, he was great!
    http://www.mskcc.org/prg/prg/bios/348.cfm
    We have the same Oncologists.

    A+ facility in my book. I really can no think of anything I had problems with on their end at all.

    I left more info on another post http://csn.cancer.org/node/176241#comment-712077 along with the link to my scan so you can see the pump inside me.
    http://csn.cancer.org/node/175005
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator

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