My visit with Dr. Edward Lin in Seattle

janderson1964
janderson1964 Member Posts: 2,215 Member

I saw Dr Lin yesterday. He is as kind and passionate about treating colon cancer and the patients themselves as I have read about him. First I would like to say that the Seattle Cancer Center was by far the nicest hospital I have ever been in. When I called to set up the appointment a couple months ago they told me they would need ALL of my medical records, biology slides and scans for the past nine years as many large cancer centers do. I have encountered this in the past with little luck in obtaining ALL of my records. I explained this to Lindsay at the cancer center. She said not to worry, they have a company they use that specializes in obtaining medical records for new patients that they use and I didn't have to do a thing. Boy was she right.

Dr. Lin came in with a binder that was about 3" thick that was ALL of my medical records which had already studied, he seemed to already know everything about me. He also had ALL of my scans dating back to 2005 on his computer which he went through each scan with me. He is very scientific in his explanations but is careful to be sure I understood hi. We talked for an hour.

He wants me to stay on ADAPT but increase the Celebrex to 200mg twice a day. He also wants to work with my oncologist on doing some more FOLFIRI (Ugh) since I just did y90 to help enhance the effectiveness of it. Then hopefully surgery depending and or Cyberknife depending on how I respond. After that ADAPT maintenance. He wanted to do some blood test while I was there. He sent me to the lab and they took me right in. I didn't have to wait for more than 5 minutes even though it was a last minute order.

He is going to do genetic testing for at least 30 different mutations on my tumor samples.

Bottom line it was well worth the cross country trip and I would do it again.

Thanks to Maia, if it wasn't for her efforts to educate us I wouldn't have known about Dr. Lin.

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Comments

  • Trubrit
    Trubrit Member Posts: 5,791 Member
    Wonderful!

    What a wonderful, upbeat, happy post. I can feel your excitement, and reflect that back. 

    I pray that this will be a turn in the right direction for you, and the battle will go ahead full force with all this new ammunition. You know what to expect with the FOLFIRI, and even though you won't like it, you'll do it. 

    Thank you so much for keeping us up-to-date. 

    When do you head home? 

     

  • LindaK.
    LindaK. Member Posts: 506 Member
    Isn't it nice

    To be treated so great?  It sounds like you had a great visit and I hope they can help you enjoy many many more years.

    Linda

  • sdp
    sdp Member Posts: 181
    More info

    Hi j anderson,

    I have also had a recurrence recently within two months of the liver resection and I think it is very early to have one !

    I am very much interested to know more as I believe dr links suggestion and advise in your case would also open some path for me.

    i can then ask my local oncologist for something on similar lines. So if possible can you pl elaborate on your meeting and his suggestion, if possible.

    i am sure many of us would have useful information and insight from your experience.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    the real thing

    Congratulations on all these treatments, big positive steps.  

    Jeff, for those thinking about finding an ADAPTable dr.   On dosing the xeloda, did you guys talk about differences between doing 5, 6, or 7 days per week, and a lower daily dose or just about doing FOLFIRI and celebrex? [Our bias has been oral chemo *every* day except surgery ]

    It might be useful for you if you plot your formula changes in time against the MCV in your CBC blood test, as well as the CEA/CA19-9/ESR values.  

     

  • lp1964
    lp1964 Member Posts: 1,239 Member
    That sounds great...

    and wonderful!

    Jeff, you mentioned that they will do genetic tests on your tumor samples. Are they actually gonna take biopsies of your tumor? And if they do will they test the genetics of the tumor or its chemo senstivity as well?

    I wish you good luck, because it looks like you are in really good hands.

    Laz

  • Semira
    Semira Member Posts: 381 Member
    Great!

    Wished all appointments would be like this one.

    Keep us posted.

    Hugs from Germany

    Petra

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    Semira said:

    Great!

    Wished all appointments would be like this one.

    Keep us posted.

    Hugs from Germany

    Petra

    So happy that you got

    So happy that you got positive news at the end of a long triIp and saga.  As you said, this is a wonderful example of forum members really contributing to another's well being. Maia made a huge difference. 

    Prayers for the plan to return you to health. 

    CM

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    lp1964 said:

    That sounds great...

    and wonderful!

    Jeff, you mentioned that they will do genetic tests on your tumor samples. Are they actually gonna take biopsies of your tumor? And if they do will they test the genetics of the tumor or its chemo senstivity as well?

    I wish you good luck, because it looks like you are in really good hands.

    Laz

    They are testing biopsy

    They are testing biopsy slides aquired from past surgeries. They are doing actual genetic testing for mutations.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    tanstaafl said:

    the real thing

    Congratulations on all these treatments, big positive steps.  

    Jeff, for those thinking about finding an ADAPTable dr.   On dosing the xeloda, did you guys talk about differences between doing 5, 6, or 7 days per week, and a lower daily dose or just about doing FOLFIRI and celebrex? [Our bias has been oral chemo *every* day except surgery ]

    It might be useful for you if you plot your formula changes in time against the MCV in your CBC blood test, as well as the CEA/CA19-9/ESR values.  

     

    No we didnt talk about the

    No we didnt talk about the differences between 5,6,7 days. He said stick with 7 for now since that is what I have been doing.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    sdp said:

    More info

    Hi j anderson,

    I have also had a recurrence recently within two months of the liver resection and I think it is very early to have one !

    I am very much interested to know more as I believe dr links suggestion and advise in your case would also open some path for me.

    i can then ask my local oncologist for something on similar lines. So if possible can you pl elaborate on your meeting and his suggestion, if possible.

    i am sure many of us would have useful information and insight from your experience.

    His protocal in general is to

    His protocal in general is to reduce tumor burdeon when possible through surgery, and or radiation and possibly systemic chemo and then do the ADAPT therapy which is the Xeloda/Celebrex combination. I went to see him in person so that he can work with my local oncologist on a treatment plan specific to me.

    He told me that he has done the genetic testing on thousands of his patients and no 2 colon caner patients have the exact same cancer. We all have different combinations of mutations just like no 2 DNA is the same.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    And I think you even managed to be here

    on one of our sunny days!  Back to grey skies now, so good timing.

    Really hope this does the trick for you, Jeff.  It sounds like Dr. Lin has been getting some good results!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    And I think you even managed to be here

    on one of our sunny days!  Back to grey skies now, so good timing.

    Really hope this does the trick for you, Jeff.  It sounds like Dr. Lin has been getting some good results!

    All 3 days I was there was

    All 3 days I was there was sunny. I really fell in love with the area and didn't want to come home. I am still a litle sad.

  • Lisa2012
    Lisa2012 Member Posts: 142
    So happy

    I am happy for you.  It is nice to hear of such a good experience.

    lisa

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Hi Janderson

    Hi Janderson,

    So glad the trip was worth it and Dr. Lin sounds great.  I'm curious as to what he plans to do with the mutation information.  We have some very extensive genetic testing on my husband and the docs don't really know what to do with it.  They understand the KRAS and BRAF and a few others but not much else.  Is he an expert in this area?

     

    Thank you very much.

    Aloha,

    Kathleen

  • Nana b
    Nana b Member Posts: 3,030 Member

    Hi Janderson

    Hi Janderson,

    So glad the trip was worth it and Dr. Lin sounds great.  I'm curious as to what he plans to do with the mutation information.  We have some very extensive genetic testing on my husband and the docs don't really know what to do with it.  They understand the KRAS and BRAF and a few others but not much else.  Is he an expert in this area?

     

    Thank you very much.

    Aloha,

    Kathleen

    Kathleen, this is who Lisa42

    Kathleen, this is who Lisa42 went to. She really liked him.  Then she got pnemonia and passed. I think you would like ADR Kunz at Stanford. How is hubby, where is he in his journey?  Please start another post and let us know.   I have his name at the tip of my tongue and just can't remember, chemo brain! Hope all is well with you too. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    All 3 days I was there was

    All 3 days I was there was sunny. I really fell in love with the area and didn't want to come home. I am still a litle sad.

    Well, just remember

    that three nice days can sometimes be our entire summer!  And we pay for them with a few hundred days of drizzle.

    That said, you'd probably like it here.  We have great mountain biking within an easy drive.

    You should come back to visit again when you get through treatment!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    Hi Janderson

    Hi Janderson,

    So glad the trip was worth it and Dr. Lin sounds great.  I'm curious as to what he plans to do with the mutation information.  We have some very extensive genetic testing on my husband and the docs don't really know what to do with it.  They understand the KRAS and BRAF and a few others but not much else.  Is he an expert in this area?

     

    Thank you very much.

    Aloha,

    Kathleen

    The genetic testing is done

    The genetic testing is done tight at the center where he works and i think he was part of developing the program. He hopes the mutations will help to determine a more targeted treatment for me with possible off lable drug use for other cancers that target the same mutations.

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Jeff

    Great news! Stay one step ahead of it (or two)

  • sdp
    sdp Member Posts: 181

    The genetic testing is done

    The genetic testing is done tight at the center where he works and i think he was part of developing the program. He hopes the mutations will help to determine a more targeted treatment for me with possible off lable drug use for other cancers that target the same mutations.

    Let us know further progress

    Let us know further progress on the matter.

    does dr Lin respond to emails ? 

    Maybe I can update him on my scenario and hopefully he may have a strategy to deal with my frequent recurrences to the liver.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    sdp said:

    Let us know further progress

    Let us know further progress on the matter.

    does dr Lin respond to emails ? 

    Maybe I can update him on my scenario and hopefully he may have a strategy to deal with my frequent recurrences to the liver.

    Dr. Lin does respond to

    Dr. Lin does respond to emails.