My visit with Dr. Edward Lin in Seattle

PhillieG said:

Jeff

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

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

jen2012 said:

Thanks for sharing your

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!

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 said:

Thanks Jeff.  My husband is

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!

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 said:

It is brutal and complicated.

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?

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 said:

titrated for INR, CEA and others

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.

Thats really good and encouraging information. Thanks for sharing.