MD Anderson-Advice Please

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sfmarie
sfmarie Member Posts: 602
edited March 2014 in Colorectal Cancer #1
My sister was dx 03/09 with mets to liver and peritoneum. She has sought out second opinions at UCLA (bad experience) and Stanford (great experience). She had emergency surgery to remove part of colon and ovaries; that is how it was discovered. Completed 12 treatments of 5FU and Erbitux. Was scheduled for liver resection when they discovered it was in another lymph node and blocking her colon; she complained of digestive issues. Surgery cancelled and recommended her to go back on chemo with 5FU again and Avastin.
Anyone think is it worth it to get a fourth opinion at MD Anderson? Thanks in advance for replies. Marie
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  • kathybd
    kathybd Member Posts: 126
    #2
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    My husband
    Just wanted to let you know , my husband(Stage 4 with mets to liver and lungs) is being treating by George Fisher, an oncologist, at Stanford and I cannot say enough good things about him. I attend the colon cancer support group there and many times he will show up and give updates on what's new in the area of colon cancer. Wish you all the best!
  • sfmarie
    sfmarie Member Posts: 602
    #3
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    kathybd said:

    My husband
    Just wanted to let you know , my husband(Stage 4 with mets to liver and lungs) is being treating by George Fisher, an oncologist, at Stanford and I cannot say enough good things about him. I attend the colon cancer support group there and many times he will show up and give updates on what's new in the area of colon cancer. Wish you all the best!

    Stanford
    My sister is also seeing Dr. Fisher. He is great. And well respected. I will look into the colon cancer support group there. Do you know how I can get information on it?
  • kathybd
    kathybd Member Posts: 126
    #4
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    sfmarie said:

    Stanford
    My sister is also seeing Dr. Fisher. He is great. And well respected. I will look into the colon cancer support group there. Do you know how I can get information on it?

    Stanford Colon Cancer support group
    Hello It meets every third Wed of the month in the conference room on 3rd floor of the Cancer Center near the Infusion Center. If you call the Cancer Center main number...which I don't have at the moment; they will give you specifics. It's run by Marguerite Love, Dr Fisher's nurse practitioner. If you send me your email, I can give you the last email I got that gives the topics and dates of the next few meetings. There are usually about 10-12 people there; both patients and family. I have been going about a year, and some of the topics get repeated so I don't go to all. Just got diagnosed with uterine cancer after dealing with my husband's cancer for 11/2 years. Good luck to your sister..she is in great hands with Dr Fisher. Kathy(irishnurse@hotmail.com)
  • sfmarie
    sfmarie Member Posts: 602
    #5
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    kathybd said:

    Stanford Colon Cancer support group
    Hello It meets every third Wed of the month in the conference room on 3rd floor of the Cancer Center near the Infusion Center. If you call the Cancer Center main number...which I don't have at the moment; they will give you specifics. It's run by Marguerite Love, Dr Fisher's nurse practitioner. If you send me your email, I can give you the last email I got that gives the topics and dates of the next few meetings. There are usually about 10-12 people there; both patients and family. I have been going about a year, and some of the topics get repeated so I don't go to all. Just got diagnosed with uterine cancer after dealing with my husband's cancer for 11/2 years. Good luck to your sister..she is in great hands with Dr Fisher. Kathy(irishnurse@hotmail.com)

    My E-mail
    Kathy-

    I would love to go. My e-mail is drezms@yahoo.com.

    You are in my prayers and your husband too. Thank you for the information!

    Marie
  • impactzone
    impactzone Member Posts: 551 Member
    #6
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    3 years at Stanford so far
    I am stage 4 and have been at Stanford for the last 3 years. Fisher is great and I have had lung surgeries from Dr Whyte (awesome) and liver resection from Dr Soo. Its a really good place and I drive 4.5 hours to go there. We did really like UCSF but kinda dumb..parking and the additional distance is just too much.
    Chip
  • Janet3
    Janet3 Member Posts: 59
    #7
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    Absolutely yes!
    My mom was diagnosed 30JUN09 Stage IV, all tumors in colon with large amount of ascites(fluid) in peritoneal cavity. We met with oncologist in San Antonio TX who gave us a plan. We asked her if she would be offended if we went to M D Anderson for a second opinion. Not only was she not offended, she highly encouraged it. We went to MDA and it was a wonderful experience. The oncologist there specializes in the signet cell adenocarcinomatosis that she has which is apparently rare. Now the two oncologists are coordinating her care. She receives her chemo - Folfox6 - in San Antonio. We will return to MDA 06OCT09 for the follow up and tests to see how the chemo is working. So, sorry I got a little carried away there for a minute, I would highly/strongly recommend he trip to Houston to get an opinion at M D Anderson. It's a wonderful facility, the customer service is unbelievable for a facility of it's size. Afterall, when it comes to your health you can never have too much advice or knowledge. My thoughts will remain with you and your family.
    Janet
  • sfmarie
    sfmarie Member Posts: 602
    #8
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    impactzone said:

    3 years at Stanford so far
    I am stage 4 and have been at Stanford for the last 3 years. Fisher is great and I have had lung surgeries from Dr Whyte (awesome) and liver resection from Dr Soo. Its a really good place and I drive 4.5 hours to go there. We did really like UCSF but kinda dumb..parking and the additional distance is just too much.
    Chip

    I agree
    The Stanford Team is top notch. Thanks for the response.
  • kathybd
    kathybd Member Posts: 126
    #9
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    sfmarie said:

    My E-mail
    Kathy-

    I would love to go. My e-mail is drezms@yahoo.com.

    You are in my prayers and your husband too. Thank you for the information!

    Marie

    EMAIL
    Marie Hope you got the email with all the info. Thanks for your prayers. I've added you and your sister to my long list. Kathy
  • sfmarie
    sfmarie Member Posts: 602
    #10
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    kathybd said:

    EMAIL
    Marie Hope you got the email with all the info. Thanks for your prayers. I've added you and your sister to my long list. Kathy

    I'll be looking for you on Wed.
    Look for me, i'll carry a red purse. Looking forward to meeting you, Marie.
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    #11
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    I think it would be a great
    I think it would be a great idea to get a second opinion. I also didn't feel the love at UCLA. I am at UCS. Have they discussed with you cytoreductive surgery with HIPEC.

    I was dx'd in 8/07 and had a liver resection with an ovary removed. It showed up a year later in the other ovary and so when we removed that ovary the debulked (removed adhesions) and gave me a hot chemo wash also called HIPEC to lessen the chance that it would recur.

    I would keep at it until you can find a doc to possible do both cytoreductive surgery and liver resection at the same time. MD Anderson is a great choice.

    My colon cancer hero is a women who was diagnosed 10 years ago with IV disease and is still in the fight. She is not cured but has had the honor of seeing her children grow up. Her method is to find the doc who does the treatment and go to him.

    Please email me if I can help in anyway.

    Jennifer Jenniferweir@usa.com

    BTW - I was just at the liver symposium in Denver and learn so much at every event. In this country where we have much, much more control as to where we get treatment, how fast we get treatment, and what that treatment is...... knowledge is truly power.
  • Wenchie
    Wenchie Member Posts: 88
    #12
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    MDAnderson
    Marie:
    I too went to MDAnderson and was VERY disappointed. They offered absolutely nothing that I couldn't get at home (I'm on folfiri and Avastin). In addition, their costs for treatment are astronomical. Eventhough I have good insurance, it was ridiculous to see them screw my insurance company for $125 for a bottle of barium prior to a CTScan! I'd pass on that third opinion if I had to do it over.
  • sfmarie
    sfmarie Member Posts: 602
    #13
    Options
    jenhopesprays said:

    I think it would be a great
    I think it would be a great idea to get a second opinion. I also didn't feel the love at UCLA. I am at UCS. Have they discussed with you cytoreductive surgery with HIPEC.

    I was dx'd in 8/07 and had a liver resection with an ovary removed. It showed up a year later in the other ovary and so when we removed that ovary the debulked (removed adhesions) and gave me a hot chemo wash also called HIPEC to lessen the chance that it would recur.

    I would keep at it until you can find a doc to possible do both cytoreductive surgery and liver resection at the same time. MD Anderson is a great choice.

    My colon cancer hero is a women who was diagnosed 10 years ago with IV disease and is still in the fight. She is not cured but has had the honor of seeing her children grow up. Her method is to find the doc who does the treatment and go to him.

    Please email me if I can help in anyway.

    Jennifer Jenniferweir@usa.com

    BTW - I was just at the liver symposium in Denver and learn so much at every event. In this country where we have much, much more control as to where we get treatment, how fast we get treatment, and what that treatment is...... knowledge is truly power.

    I sent you an e-mail
    Jennifer,

    Thank you. I looked up Dr. Lowy at UCS. I am not sure if that is an option but it certainly sounds promising. I sent you an e-mail asking you more questions about it.

    Marie
  • sfmarie
    sfmarie Member Posts: 602
    #14
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    Wenchie said:

    MDAnderson
    Marie:
    I too went to MDAnderson and was VERY disappointed. They offered absolutely nothing that I couldn't get at home (I'm on folfiri and Avastin). In addition, their costs for treatment are astronomical. Eventhough I have good insurance, it was ridiculous to see them screw my insurance company for $125 for a bottle of barium prior to a CTScan! I'd pass on that third opinion if I had to do it over.

    Wenchie
    Thanks for your honesty. I do wonder HOW different treatment options are from one NCI center to another. Am I being naive to think they are all fairly similar?
  • kapper48
    kapper48 Member Posts: 85
    #15
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    Janet3 said:

    Absolutely yes!
    My mom was diagnosed 30JUN09 Stage IV, all tumors in colon with large amount of ascites(fluid) in peritoneal cavity. We met with oncologist in San Antonio TX who gave us a plan. We asked her if she would be offended if we went to M D Anderson for a second opinion. Not only was she not offended, she highly encouraged it. We went to MDA and it was a wonderful experience. The oncologist there specializes in the signet cell adenocarcinomatosis that she has which is apparently rare. Now the two oncologists are coordinating her care. She receives her chemo - Folfox6 - in San Antonio. We will return to MDA 06OCT09 for the follow up and tests to see how the chemo is working. So, sorry I got a little carried away there for a minute, I would highly/strongly recommend he trip to Houston to get an opinion at M D Anderson. It's a wonderful facility, the customer service is unbelievable for a facility of it's size. Afterall, when it comes to your health you can never have too much advice or knowledge. My thoughts will remain with you and your family.
    Janet

    signet ring cell
    Hi, Janet
    My name is Pat and I am also stage 4 with the signet ring cell. I too went to MDA and saw Dr. Kee. I was just wondering, if you don't mind, if you could tell me what doctor your mother saw on your visit? Thanks
  • kimby
    kimby Member Posts: 797
    #16
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    sfmarie said:

    Wenchie
    Thanks for your honesty. I do wonder HOW different treatment options are from one NCI center to another. Am I being naive to think they are all fairly similar?

    NCI ccc
    I would say that all NCI cancer centers are NOT alike and some have better records for certain cancers or mets than others. One person will love a facility and another will hate it. For instance, I rarely take doctor recommendations from other patients. We are all looking for different things from our doctors. I don't care one wit about bedside manner, while that is extremely important to many of my friends. Finding the right place and the right team can seem daunting. You really need to find what works for you.

    I know this doesn't sound helpful, just don't give up. I would get 50 opinions if that's what it took; most people don't feel that way.

    Good luck,

    Kimby
  • sfmarie
    sfmarie Member Posts: 602
    #17
    Options
    kimby said:

    NCI ccc
    I would say that all NCI cancer centers are NOT alike and some have better records for certain cancers or mets than others. One person will love a facility and another will hate it. For instance, I rarely take doctor recommendations from other patients. We are all looking for different things from our doctors. I don't care one wit about bedside manner, while that is extremely important to many of my friends. Finding the right place and the right team can seem daunting. You really need to find what works for you.

    I know this doesn't sound helpful, just don't give up. I would get 50 opinions if that's what it took; most people don't feel that way.

    Good luck,

    Kimby

    Radiation Treatments
    Hi Kimby,

    The radiation treatment in conjunction with the chemo was not suggested as a course of treatment. Liver resection was also aborted due to lymph node activity and more growth. Back to chemo again as well. Did you do the chemo before the radiation the second time around?
    Marie
  • kimby
    kimby Member Posts: 797
    #18
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    sfmarie said:

    Radiation Treatments
    Hi Kimby,

    The radiation treatment in conjunction with the chemo was not suggested as a course of treatment. Liver resection was also aborted due to lymph node activity and more growth. Back to chemo again as well. Did you do the chemo before the radiation the second time around?
    Marie

    chemo and rads
    Marie,

    I have done chemo both during my liver rads and now with the lymph node rads. Most places only would consider stereotactic rads or cyberknife for either of those areas. I was not a candidate though. You may be and should look into that. Don't wait for your doctor to "offer" treatments. I know of many survivors that are alive now because they approached their doctors about a specific treatment.

    Here is a quote from Suzanne Lindley, an 11 yr survivor of stage IV crc and she is still in treatment. She founded YES: fightlivertumors.org, founded and organizes the Liver Symposiums 3-4 times a year now, marches on Washington, speaks directly with anyone who needs help or direction with their treatment, and is currently in Dublin with the Live Strong global march. Her words are far superior to mine:

    "These are the very reasons that self-advocacy is so extremely important! More times than I can count, it is the patient that directs the physician to other treatment options. I lobbied this past year with a group of physicians from MD Anderson. We were discussing the importance of care plans and as I told my story and about how I discovered SIR-spheres, they asked questions. Where could it be received? Who could benefit? Etc. Etc. They were impressed with the procedure and my success with it and totally shocked to find out that it was offered at MDA."

    External beam radiation is rarely done, but my rad onc just received a lifetime achievement award from ASTRO for his work with liver tumors. I'm just very lucky to have one of only a handful in the country that can do this successfully. As usual, my situation is very unique. What can I say, I'm special. hahahaha

    I hope this helps,

    Kimby
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #19
    Options
    kimby said:

    chemo and rads
    Marie,

    I have done chemo both during my liver rads and now with the lymph node rads. Most places only would consider stereotactic rads or cyberknife for either of those areas. I was not a candidate though. You may be and should look into that. Don't wait for your doctor to "offer" treatments. I know of many survivors that are alive now because they approached their doctors about a specific treatment.

    Here is a quote from Suzanne Lindley, an 11 yr survivor of stage IV crc and she is still in treatment. She founded YES: fightlivertumors.org, founded and organizes the Liver Symposiums 3-4 times a year now, marches on Washington, speaks directly with anyone who needs help or direction with their treatment, and is currently in Dublin with the Live Strong global march. Her words are far superior to mine:

    "These are the very reasons that self-advocacy is so extremely important! More times than I can count, it is the patient that directs the physician to other treatment options. I lobbied this past year with a group of physicians from MD Anderson. We were discussing the importance of care plans and as I told my story and about how I discovered SIR-spheres, they asked questions. Where could it be received? Who could benefit? Etc. Etc. They were impressed with the procedure and my success with it and totally shocked to find out that it was offered at MDA."

    External beam radiation is rarely done, but my rad onc just received a lifetime achievement award from ASTRO for his work with liver tumors. I'm just very lucky to have one of only a handful in the country that can do this successfully. As usual, my situation is very unique. What can I say, I'm special. hahahaha

    I hope this helps,

    Kimby

    MD Anderson
    Hi Marie,

    I agree with WENCHIE about M.D. Anderson. I went there for a second opinion and was highly disappointed in several aspects of their facility. I agree with KIMBY that not all NCI cancer institutes are the same. I guess it just all boils down to what and who YOU are cofortable with. If I was not getting the results I thought I should be getting then I would get 100 opinions if necessary and not stop till I got results. Just my opinion. Best of luck

    Jennie
  • sfmarie
    sfmarie Member Posts: 602
    #20
    Options
    kimby said:

    chemo and rads
    Marie,

    I have done chemo both during my liver rads and now with the lymph node rads. Most places only would consider stereotactic rads or cyberknife for either of those areas. I was not a candidate though. You may be and should look into that. Don't wait for your doctor to "offer" treatments. I know of many survivors that are alive now because they approached their doctors about a specific treatment.

    Here is a quote from Suzanne Lindley, an 11 yr survivor of stage IV crc and she is still in treatment. She founded YES: fightlivertumors.org, founded and organizes the Liver Symposiums 3-4 times a year now, marches on Washington, speaks directly with anyone who needs help or direction with their treatment, and is currently in Dublin with the Live Strong global march. Her words are far superior to mine:

    "These are the very reasons that self-advocacy is so extremely important! More times than I can count, it is the patient that directs the physician to other treatment options. I lobbied this past year with a group of physicians from MD Anderson. We were discussing the importance of care plans and as I told my story and about how I discovered SIR-spheres, they asked questions. Where could it be received? Who could benefit? Etc. Etc. They were impressed with the procedure and my success with it and totally shocked to find out that it was offered at MDA."

    External beam radiation is rarely done, but my rad onc just received a lifetime achievement award from ASTRO for his work with liver tumors. I'm just very lucky to have one of only a handful in the country that can do this successfully. As usual, my situation is very unique. What can I say, I'm special. hahahaha

    I hope this helps,

    Kimby

    Self Advocacy
    Thanks Kimby, for the reminder that even at this stage we must self advocate. I'll look into the external beam radiation. Cyberknife was mentioned. Yup, you are special!
  • sfmarie
    sfmarie Member Posts: 602
    #21
    Options
    kimby said:

    chemo and rads
    Marie,

    I have done chemo both during my liver rads and now with the lymph node rads. Most places only would consider stereotactic rads or cyberknife for either of those areas. I was not a candidate though. You may be and should look into that. Don't wait for your doctor to "offer" treatments. I know of many survivors that are alive now because they approached their doctors about a specific treatment.

    Here is a quote from Suzanne Lindley, an 11 yr survivor of stage IV crc and she is still in treatment. She founded YES: fightlivertumors.org, founded and organizes the Liver Symposiums 3-4 times a year now, marches on Washington, speaks directly with anyone who needs help or direction with their treatment, and is currently in Dublin with the Live Strong global march. Her words are far superior to mine:

    "These are the very reasons that self-advocacy is so extremely important! More times than I can count, it is the patient that directs the physician to other treatment options. I lobbied this past year with a group of physicians from MD Anderson. We were discussing the importance of care plans and as I told my story and about how I discovered SIR-spheres, they asked questions. Where could it be received? Who could benefit? Etc. Etc. They were impressed with the procedure and my success with it and totally shocked to find out that it was offered at MDA."

    External beam radiation is rarely done, but my rad onc just received a lifetime achievement award from ASTRO for his work with liver tumors. I'm just very lucky to have one of only a handful in the country that can do this successfully. As usual, my situation is very unique. What can I say, I'm special. hahahaha

    I hope this helps,

    Kimby

    Self Advocacy
    Thanks Kimby, for the reminder that even at this stage we must self advocate. I'll look into the external beam radiation. Cyberknife was mentioned. Yup, you are special!

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