Dr. Lin ADAPT

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Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Dr. Lin ADAPT

Postby Cb75 » Mon Nov 17, 2014 5:49 pm

I spoke with Dr. Lin earlier today. He was kind enough to call me ahead of my scheduled visit. After going though my circumstances and situation (without reviewing my file and CT), he believes I am an idea candidate for his trial. However, I am in Toronto and it would require a once a month visit to Seattle, which is not easy. He is willing to work with my oncologist. This is likely what I will do. I do need to go and see him, but he wants a more recent scan. My last was six weeks ago. The hope is to get to as much as a response I will get with chemo, then 'maintenance' on his plan with him consulting from time to time, should I desire his input. He mentioned that his preliminarily results from his Phase II trial are very promising, where 90 percent have done well. He also mentioned he has patients many years out on this protocol (three or four years).

What I found interesting were his comments on FOLFOX. He mentioned some new research that shows FOLFOX to be less effective for lung mets. So, getting FOLFOX would not do a very good job 'mopping up' cells in the lung. He seemed to indicate that FOLFIRI could have been a better option, especially if there is any fear of lung involvement. I had never heard this before. I found it very interesting and perhaps something others should look into when starting chemo, if they have lung involvement.


There was some mention before about Dr. Lin not seeing patients. I asked his office. They advised that he is now focusing only on crc, and no longer GI in general. So, he is no longer taking GI patients ONLY crc. This is a good thing for us! :)

cb <3
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

stevieb
Posts: 410
Joined: Sat Feb 09, 2013 12:26 am

Re: Dr. Lin ADAPT

Postby stevieb » Mon Nov 17, 2014 6:17 pm

Please let me know how things proceed as I may be interested after I finish mop up chemo with Folfiri!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

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CRguy
Posts: 10474
Joined: Sun Feb 10, 2008 6:00 pm

Postby CRguy » Mon Nov 17, 2014 7:02 pm

Very happy you are moving forward Carm, sounds promising and very ++++POSITIVE !

BUTT ......as a pseudoadjuvant ( controversial :shock: ) FOLFOX patient for a lung met .... still NED 4 years out, I admit I have not heard of FOLFOX being inferior as a chemo for the Lung Thang Gang ... except to say everyone's situation is different and needs to be taken into consideration with their own Oncs.

PLEASE keep us in the loop and MEGA Cheers and Harmony my fellow Canuckian !
(( PS love your new signature line ..... WORD ! ))
On the journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

FatBob2012
Posts: 198
Joined: Tue Jul 03, 2012 3:41 pm
Facebook Username: arthur.h.baker1
Location: Texas, USA

Re: Dr. Lin ADAPT

Postby FatBob2012 » Mon Nov 17, 2014 9:07 pm

Please do keep us updated since it may be an outlet for others in the future.
Stage IV 5/2012
FOLFOX + Avastin
Liver res 7/2012
Chemo 9/2012
NED 10/2012
CEA @ 5 mets lung&liver 12/13
Liver spot 3.7 x 2.5 cm found January 2014
Cystectomy 2/14
3/14 FOLFIRI 8 treatments
10/14 CEA 3 with stable METS
12/14 CEA 51 :-((

rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: Dr. Lin ADAPT

Postby rp1954 » Tue Nov 18, 2014 12:32 am

Carm,
The areas least practically discussed are the particular risks and mitigations of the -coxib class generally, which are lower for celecoxib. Newbies probably want estimates for actual cv "events" to compare with the ordinary celecoxib use vs while on xeloda for lower grade CRC cases. The relative risks almost seem like a no-brainer for IVb or advanced mCRC if the biomarkers improve, and the risks are mitigated. Dr. Lin's clinical impression of the event numbers and risk factors would be good to hear and discuss. Also his thoughts on blood thinning as a mitigation strategy of the -coxib risks e.g. fish oil+gs polyphenols etc vs. low MW heparins vs. oral drugs.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: Dr. Lin ADAPT

Postby janderson » Tue Nov 18, 2014 7:21 am

When I saw Dr. Lin back in July he told me the same thing about FOLFOX.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

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singingholly
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Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Dr. Lin ADAPT

Postby singingholly » Tue Nov 18, 2014 9:02 am

Very interesting, thank you for updating.
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Dr. Lin ADAPT

Postby BrownBagger » Tue Nov 18, 2014 10:33 am

Dr. Linn's work and ideas sound encouraging.

I'm currently on Irinotecan and Xeloda, which is essentially Folfuri, and it (along with Erbitux) has been keeping my lung mets stable for more than a year.

I always sort of expected (dreaded) having to go back on oxi at some point, but there may be no point. Don't know if that's good news or bad. Probably bad, since it's one less option, but the prospect of going back on oxi isn't particularly attractive.

Anyway, my experience tends to bear out Linn's theory, at least in part.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

eleven11
Posts: 130
Joined: Tue Sep 16, 2014 12:48 pm
Location: Chicago

Re: Dr. Lin ADAPT

Postby eleven11 » Tue Nov 18, 2014 11:47 am

Thanks so much for sharing. What is your current situation cb? Do you presently have any mets in your lungs or are you NED and considering ADAPT as maintenance? How many lung mets have you had and how many times?

Please keep us in the loop and best of luck to you.
11/11 Mom dx @ age 50 T3M0N0
2012 12 tx FOLFOX
12/13 2 lung nodules
1/14 VATS wedge
3/14-present 5FU
4/15 Lobectomy RML

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Dr. Lin ADAPT

Postby KWT » Wed Nov 19, 2014 10:36 am

Has dr Lin seen your genetic testing results yet?

eleven11
Posts: 130
Joined: Tue Sep 16, 2014 12:48 pm
Location: Chicago

Re: Dr. Lin ADAPT

Postby eleven11 » Wed Nov 19, 2014 1:04 pm

Cb75 wrote:He mentioned that his preliminarily results from his Phase II trial are very promising, where 90 percent have done well. He also mentioned he has patients many years out on this protocol (three or four years).


What does he mean by 90% have done "Well?" Does that mean complete remission for those on the ADAPT therapy while NED?

This article states that:
"About 40 percent of Dr. Lin’s patients have achieved complete or near complete responses, which means there is little or no detectable presence of cancer."
http://www.gatewaycr.org/DrLin_CROYA
11/11 Mom dx @ age 50 T3M0N0
2012 12 tx FOLFOX
12/13 2 lung nodules
1/14 VATS wedge
3/14-present 5FU
4/15 Lobectomy RML

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Dr. Lin ADAPT

Postby Cb75 » Wed Nov 19, 2014 5:22 pm

eleven11 wrote:
Cb75 wrote:He mentioned that his preliminarily results from his Phase II trial are very promising, where 90 percent have done well. He also mentioned he has patients many years out on this protocol (three or four years).


What does he mean by 90% have done "Well?" Does that mean complete remission for those on the ADAPT therapy while NED?

This article states that:
"About 40 percent of Dr. Lin’s patients have achieved complete or near complete responses, which means there is little or no detectable presence of cancer."
http://www.gatewaycr.org/DrLin_CROYA


To be honest, I missed something there when he mentioned some stats pretty quickly, almost in passing. I think the 90 percent is stable or no progression or maintained NED. I'll find out more as I research this.

I have sent my medical records, however, the initial post was based on an initial review of some records and my discussion with him. I dont believe he had the pathology yet, but I have seen my path reports and know what it says regarding genetic markers. I only seem to have the KRAS mutation. I am also MSS stable.

My current situation is that I have lung mets, that have responded well to eight months of FOLFORI. The goal is to get to NED or ask close to NED as possible with surgery and a strong chemo, then go to the maintenance to keep things under control and to kill off any stem cells.

Hope this help. I really appreciate anyones thoughts. Its a hard decision when you go outside of your doctor and his/her recommendations.

cb
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Awreed
Posts: 65
Joined: Sun May 04, 2014 11:32 pm

Re: Dr. Lin ADAPT

Postby Awreed » Thu Nov 20, 2014 4:30 pm

I met with Dr. Lin Tuesday (2nd appt.). I just completed 4 cycles of Folfiri and had a PET/CT which shows NED with the exception of possible disease in spleen leftover from ablation in September, I am meeting with Interventional Radiologist who performed ablation tomorrow. He will have the best handle on whether the pet activity is from ablation or cancer. Either way both Lin and my local Onc in Wash. DC, Dr. Marshall at Georgetown's Lombardi Cancer Center, agree that my next steps will be ADAPT. I did have genetic testing done at Seattle Cancer Care Alliance and I evidently have a mutation that responds well to ADAPT. So happy they are in agreement. If Spleen does have cancer I will have radiation while taking ADAPT. Will keep anyone following ADAPT posted on how it goes. Good news is my insurance approved both Xeloda and Celebrex for a year with zero co-pay...yay! Also, just a personal plug that both Lin and Marshall are TOP NOTCH:
Smart, Passionate, great sense of humor, Lin has left coast "optimism", Marshall more East coast "direct"... both brilliant usually with same message but interesting (and refreshing) to have the two delivery styles... :)
Stage IV crc 5/11
Peritoneal spread-Cytoreductive Surgery 6/13
Liver resection-8/13
Chemo 10/13-3/14
NED- 5/14

eleven11
Posts: 130
Joined: Tue Sep 16, 2014 12:48 pm
Location: Chicago

Re: Dr. Lin ADAPT

Postby eleven11 » Fri Nov 21, 2014 1:38 pm

Does anyone know anything about KRAS Mutation and ADAPT? Is it as effective for those that have this mutation?
11/11 Mom dx @ age 50 T3M0N0
2012 12 tx FOLFOX
12/13 2 lung nodules
1/14 VATS wedge
3/14-present 5FU
4/15 Lobectomy RML

sdp
Posts: 128
Joined: Tue Apr 03, 2012 2:34 pm
Facebook Username: Shitul patel
Location: Mumbai , India

Re: Dr. Lin ADAPT

Postby sdp » Sun Nov 23, 2014 11:09 am

Hi
Does anyone know if Dr lin can have a patient from overseas ?
I had mcrc with mets only to liver and have had four recurrences after curative resection -
Is there a way to send my current reports for a possible consult A email or phone

I can pay the consult charges myself -
If someone can guide me as to how I can do this I would appreciate
Dx sig CC/ liver mets stg4 dec/11
10 cyc FOLFOX+Erb
Resect CC And Liver July-Aug/12
2 cyc - FOLFOX+Erb
Erb only -Nov/12-mar/13
iRE to 2 liver met Oct 13
2nd recur Mar 14
Liver resect April '14
3rd recur -july '14
Microwave ablation-2 liver met- July '14


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