Visit with Dr. Edward Lin (ADAPT therapy).

[janderson]

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.

[KWT]

Sounds good jeff, do you just do the xeloda as a normal dose for your body mass? How do you do with the folfori ?


Jeff,Maia is da bomb

[janderson]

He didnt seem concerned about calculating body mass for the Xeloday. I told him I am doing 4000mg per day which is a very high dose. 7 days on and 7 days of and have had no HFS. so he said leave it as is. He didn't say how he wanted to do the FOLFIRI. I think wants me to do a PET scan first and then discuss it with my oncologist.

[KWT]

How much are you weighing Jeff? I'm 150 now and at 4000 mg at the end of two week cycles I was pretty wrung out.

[janderson]

185. I do get pretty fatigued at the endof the cycle but no nausea of HFS.

[singingholly]

Thank you for sharing . And thank Maia!
H.

[KWT]

He didnt seem concerned about calculating body mass for the Xeloday.

I believe they should change the name of xeloda officially to this almost makes ya want to try it

[KWT]

Hey jeff just got back from my doc and he said xeloda 4000 per day 1 week on 1 week off and got the prescript for celebrex. Seeing lin on the fifteenth

[janderson]

Awesome, way to advocate for yourself. We are now on similar paths.

[KWT]

Jeff, do you take the celebrex on your off weeks? The one problem I see is that my ins. Co. Doesn't like to pay for celebrex

[andy21]

Following page has good reference info on why Celebrex(and some supplements) may work.
http://www.lef.org/protocols/cancer/chemotherapy_03.htm
(Please read: Inhibiting the COX-2 Enzyme section )

[KWT]

Thanks Andy, I think the "progressive oncologist" is key my oncologist literally rolled his eyes when I brought up adapt for the third time. Although he did give me a script for celebrex.

[rp1954]

Celecoxib now has an approved generic source in the US. Overseas it is already 15-25 cents per pill in some places. The insurers' captive mail order pharmacies should be all over that.

[chrissyrice]

Thanks for the great link and information.

I am going to keep taking the CoQ10 faithfully.

[KWT]

My appt. just got bumped up to July 29 see what dr. Lin has to say for me.