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My visit with Dr. Edward Lin in Seattle

janderson1964
Posts: 2215
Joined: Oct 2011

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.

Trubrit's picture
Trubrit
Posts: 5489
Joined: Jan 2013

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.
Posts: 506
Joined: Apr 2013

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's picture
sdp
Posts: 181
Joined: Jan 2012

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.

janderson1964
Posts: 2215
Joined: Oct 2011

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.

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

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.  

 

janderson1964
Posts: 2215
Joined: Oct 2011

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.

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

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

janderson1964
Posts: 2215
Joined: Oct 2011

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

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

Wished all appointments would be like this one.

Keep us posted.

Hugs from Germany

Petra

Cathleen Mary
Posts: 827
Joined: May 2011

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

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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
Posts: 2215
Joined: Oct 2011

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.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

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!

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

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

lisa

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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's picture
Nana b
Posts: 3045
Joined: May 2009

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. 

janderson1964
Posts: 2215
Joined: Oct 2011

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.

sdp's picture
sdp
Posts: 181
Joined: Jan 2012

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
Posts: 2215
Joined: Oct 2011

Dr. Lin does respond to emails.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

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

janderson1964
Posts: 2215
Joined: Oct 2011

I am not sure if I am one step ahead or just chasing my tail.

jen2012
Posts: 1607
Joined: Aug 2012

Thanks for sharing your experience with Dr Lin Jeff.  Is this a forever thing?  My husband started low dose xeloda every day about a month ago.  He also goes for avastin every 3 weeks.  I've brought up Celebrex with his onc a couple of times, but just sent her a link to dr. Lin's adapt trial to see what she says.  How often does he rcommend scanning?  How long will you stay on adapt?  Does he look at cea levels?  Sorry if I overlooked the answered in this post.  Good luck with it...hope you are doing well!

janderson1964
Posts: 2215
Joined: Oct 2011

I just started working with him as an adviser. For now we are going to discontinue the clelebrex and do a few rounds of folfiri maybe SBRT and if i respond well to y90 maybe liver resection. At that point i will go on adapt. He didnt mentiont frequency of scans but i am currently scanning every three months. In fact my next scan is this monday. You can stay on adapt indefinately as long as its working. He has patients who have been on it over ten years. They are not NED but stable which to me is just as good.

How is your husband doing.

jen2012
Posts: 1607
Joined: Aug 2012

Thanks Jeff.  My husband is concerned about taking the Celebrex with all the bad press with heart attacks, stroke, etc.  guess dr. Lin feels the benefit outweighs the risk?  

Hes been doing well on maintenance chemo.  Went back to work a month ago.  Still using a cane, but just started pt again in hopes of losing the cane and the hobble.  The ortho surgeon showed up his pet scan right before the femur break...had a softball size tumor, which is now a softball size bone growth, so he's lost some range of motion, but the cancer is not showing up at the moment so thats good.

Good luck with your scan ... I will be looking for some good news from you!

janderson1964
Posts: 2215
Joined: Oct 2011

I am glad to hear that things seem to be moving in a positive direction. I think Dr. Lin feels the benefit outweighs the risk which I aggree. I would rather take my chances with my heart if it is going to help me fight cancer and extend my life. I am still amazed at the choices we have to make and the things we put out poor bodies through in order to fight cancer.

I was terrified of cancer before I was diagnosed as I am sure we all were. But I had no idea it could be this brutal and complicated.

jen2012
Posts: 1607
Joined: Aug 2012

It is brutal and complicated.  No one would understand if they haven't lived it..it's almost like a whole different world.  

When do you get scan results?

janderson1964
Posts: 2215
Joined: Oct 2011

I didn't have an appointment set up with my oncologist. i was actually going to wait on the results until my appointment with my interventional radiologist on 8/25. But I have been having a lot of stomach issues that doesn't seem to ease up and I can see my wife is getting concerned so I just requested an appointment with my oncologist. I think I might have an ulcer from the y90 radiation so I will talk to him about that again and go over the scan results hopefully early next week.

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

When we add celecoxib to wife's chemo-supplement mix, CEA goes down.  My wife sometimes has high coagulability and when it gets too high (low INR), we cut down on vitamin K2 and celecoxib, and nearly max on blood thinning nutrients.  CEA and CA19-9 go up until we add enough celecoxib to chemo, and beat them down again.   One of these days, we hope to catch some little rat of a met on a scan, and cut it out.

janderson1964
Posts: 2215
Joined: Oct 2011

Thats really good and encouraging information. Thanks for sharing.

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