ADAPT - Dr. Lin ONGOING Thread

[Sophy]

Thanks, CB and Skypup.

CB I hope your visit goes well and Dr Lin comes up with a good plan for you. Could you let him know that people like me who aren't his patients really appreciate him sharing information with our oncologists. It is very kind and helpful of him.

Sophy

[edi12]

Hello!

Could someone please advise me the best way to contact Dr. Lin? ( I didn't find his email and phone number to contact him)

We're going to see my wife's onco tomorrow and I'd like to ask him if could be a good idea introduce Adapt regimen after FOLFIRI / Avastin.

I think it would be a good alternative to current chemo because Adapt apparently has fewer side-effects.

Thank you all in advance.
Hugs

[eleven11]

Hi Cb, how'w your appt with Dr. Lin go?

[justAfterTEM]

hi edi12, you can check out this post below, make sure the final extension is not .exu, the correct is .edu. Also sending you pm.

viewtopic.php?f=1&t=48596

Hello!

Could someone please advise me the best way to contact Dr. Lin? ( I didn't find his email and phone number to contact him)

We're going to see my wife's onco tomorrow and I'd like to ask him if could be a good idea introduce Adapt regimen after FOLFIRI / Avastin.

I think it would be a good alternative to current chemo because Adapt apparently has fewer side-effects.

Thank you all in advance.
Hugs

[edi12]

hi edi12, you can check out this post below, make sure the final extension is not .exu, the correct is .edu. Also sending you pm.

viewtopic.php?f=1&t=48596

justAfterTEM,

Thank you so much!
I've sent it to the onco and he promised to read about Lin's research.

Also looking forward to CB's appointment feedback.

Hugs!

[Cb75]

I'm back from my trip to Seattle and to see Dr. Lin. First off, Seattle was very beautiful. Secondly, Dr. Lin seems to be a very kind and responsive doctor. He seems to know quite a bit about a lot of different things and also has an innovative and aggressive approach. I enjoyed our discussion and meeting him. However, I am now left with more questions than answers. I've been battling my lungs for a few years now. I've been lucky to have a fantastic response to chemo, brining me very close to being NED again. That alone is almost a miracle given the spread of disease I had a few years ago. Things look ok, however, I do have some inflammation in my lower right lung which could be 'nothing' or 'something'. I knew this was there, but I don't know what it is. So, as you can imagine, our discussion was more attuned to what is going on with me and figuring out what to target. If the inflammation is nothing, then he can help. If it is something, I need an aggressive treatment of the plura and potential infusion into my lung tissue. We talked about potential treatments of this by way of radiation or even having my lobe removed. The good news is that my left lung, which I had 10 spots removed remains clear. He was very impressed with what Dr. Rolle in Germany did for my lungs and wanted his contact to invite him to Seattle to discuss the laser surgery and brining it to the US.

I have quite a few notes, but I haven't reviewed them yet. I"m on a chemo week, my brain is a bit off and I"m stressed. However, I did ask about adding Celebrex to FOLIFRI and Avastin, he said NO. He advised me that he would not prescribe celebrex with Avastin. He also wouldn't recommend it with FOLFIRI due to side effects and the science behind his trial. Each is individual, this is his advise to me directly. I cannot comment on anyone individual circumstances.

He also advised that he doesn't recommend Stargiva as it has shown to have hardly any benefit, if any. He was involved in the research of the drug, and doesn't like it.

There may be more, but I can't recall right now. I'll try to update once I get to review my notes.

cb <3

[lilacbreastedroller]

cool!

-Karin

[Julie YW]

An odd response from Dr. Lin as I had understood from Andrew (who consults Dr. Lin on a secondary basis and Dr. Marshall on a primary basis) -- they are friends -- that Georgetown is launching a trial with Xeloda, Avastin and Celebrex and that in fact, Andrew is on it. Dr. Marshall likes to add Avastin but of course he's not the king of ADAPT. Maybe this info is now outdated, but this was my understanding.

[Julie YW]

I also knoTw for a fact that Dr. Kemeny at MSK is prescribing Celebrex with Folfiri and Avastin for one of her patients (who I know well personally), although she is doing so for pain potentially associated with chemo. This is whole thing is a shit show with no one, including the doctors, knowing anything and everyone flailing and scrambling around like chickens with their heads chopped off.

[KWT]

I also knoTw for a fact that Dr. Kemeny at MSK is prescribing Celebrex with Folfiri and Avastin for one of her patients (who I know well personally), although she is doing so for pain potentially associated with chemo. This is whole thing is a shit show with no one, including the doctors, knowing anything and everyone flailing and scrambling around like chickens with their heads chopped off.

I'm taking Celebrex with Folfiri, my new onc also mentioned that it may be beneficial with full fury. I can't help but wonder if dr Lin has other reasons for not liking that combo. so celecoxib brings out the hiding cancer cells for xeloda to put the hurt to? Why would irinotecan not do the same only better?

Julie, shit show about sums it up.

[Cb75]

I agree, it seems really odd. What I can say is that, Dr. Lin's direct advice to me and my circumstance was that he would not prescribe Avastin with Celebrex, or a full on FOLFIRI, Avastin and Celebrex. It really is an individual basis. All I can account for is what he recommend to me. He said no way to adding the celebrex to my current regime, and wants me to figure out the inflammation. Then we can go from there. Its a very delicate balance in terms of immune regulators, up and down, etc. There is more than just 'adding' in celebrex, to some extent. Its a question of timing, from what I gather. However, I will say at stage iv, risks are what they are, and we need to individually weigh what the risks are and what they mean to us and our particular case.

He is getting some good results with KRAS mutants.

He also mentioned some hope for TAS 102.

cb <3

[KWT]

Carmen, did he say when he thought tas would be available? He must have some idea?

In my case he said three or four rounds full fury and then adapt."shock and awe"

[gator.girl]

Thanks for the update Carmen!

I agree with Julie - I think the docs don't even know and there is a lot of trial and error -

I am intrigued by Dr. Lin - I wonder why it was so important for him to have you (Carmen) go see him in person? He responded to my inquiries by email but in the end his responses were contradictory…. I first asked him about adding celebrex to Folfiri - (I am not currently on avastin) - he told me (that in my case) it was a good window to add it then when I sent him a thank you email and told him that my oncologist was on board with starting it, he responded that he wouldn't add it to my folfiri and would only use it as maintenance…. My oncologist is PI for the UF site of the nationwide Folfox + Celebrex study for Stage 3 crc - so he knows quite a bit about celebrex and he still felt it was a good idea to add it… he knows I want to be as aggressive as I can be in my treatment… now fighting with insurance to have them approve it!


Kenny TAS is now available in 29 locations - more being added
https://clinicaltrials.gov/ct2/show/stu ... ocs=Y#locn


Couple of (older) studies on Folfiri + Celebrex
http://www.ncbi.nlm.nih.gov/pubmed/18065406
http://www.ncbi.nlm.nih.gov/pubmed/16760295
(the second one is a study in Italy that showed that adding celebrex to folfiri didn't have any benefits… was done in 2006 though)

Rachel

[vilca11]

Dr.Lin contradicts himself quite often. He is not fantastically coherent either. He confuses heck out of everything in his dictations, they are just horrible and might serve as an example of how medical documentation should not be.... I think, this is because he has too much of very important thoughts in his head and that interferes with his attention, verbalization, concentration, etc when it comes to things that are not that important to him (no impact to his research). He is quite obsessed with his ADAPT - it is his baby and best bet career wise.

He invites patients to see him because even off his clinical trial, they are statistically important to Dr. Lin's theory support. When he sees a patient, there is a registration and statistical occurrence of medical visit with documented parameters of the patient, where his progress will be from now on recorded even with info coming over the phone. All that is possible only if patient comes personally.... Later on this data will be analyzed and will serve personally to Dr. Lin as additional evidence/comparison in post study analyses (he can't present that part to the medical community in the context of study, since patients are off the study, but he can himself and for himself use that additional data). That is how I understand him and his work.
vilca

[KWT]

It's an expensive weekend, Seattle is. No silver bullets. One can quite easily add Celebrex. timing? pffft. I'm starting to not buy it. Where's the beef?