ADAPT - Dr. Lin ONGOING Thread

[Cb75]

Dr. Lin and his ADAPT program are a recurring theme here. There are a group of us who are on the plan, thinking about it, or interested in hearing about it. I think an ongoing topic/thread would be beneficial for those who are interested.

I have had an initial consult with Dr. Lin about his program. He believes that I can benefit and has seen some very good 'response' so far. I don't know the details as this was a comment in passing. My plan is to meet with my doctors here to ensure that I have their support and access to the meds, then I'll scan again, then a trip to see Dr. Lin sometime in January.

Carm

[eleven11]

Thanks for this Carm. I am one of those people that are VERY interested in this.

Are you located in Seattle? How did you go about speaking to him? I emailed him a few months ago and I never received a response. I told my mom's oncologist about this and she said "We will see about the next scan. If she get's a heart attack or a stroke, don't blame me!"

My mom is in otherwise "healthy" condition But she did have a blood clot while on FOLFOX after her surgery and radiation, so this is a side-effect that worries me. What is Dr. Lin's take on the warnings around Celebrex?

[bitchslapped]

Good idea. Thumbs up.

[violeta_k]

Carmen, thanks for opening this thread. I'll be watching it closely.

[singingholly]

Good idea, Carm.

[Cb75]

Thanks for this Carm. I am one of those people that are VERY interested in this.

Are you located in Seattle? How did you go about speaking to him? I emailed him a few months ago and I never received a response. I told my mom's oncologist about this and she said "We will see about the next scan. If she get's a heart attack or a stroke, don't blame me!"

My mom is in otherwise "healthy" condition But she did have a blood clot while on FOLFOX after her surgery and radiation, so this is a side-effect that worries me. What is Dr. Lin's take on the warnings around Celebrex?

I am in Toronto, Canada. This makes it difficult to be a 'patient'. However, Dr. Lin is willing to work with my oncologist and will take me on if I go and see him. My oncologist did mention the issue of side effects. I will do some research this week and put some thought into this. I will also speak with Dr. Lin about the side effects before I decide to go with this plan, or not.

It's a tough call. Right now, I have some active disease. Dr. Lin has asked for another CT scan now, but I'm scheduled for one in January. I'm afraid to go off FOLFIRI and Avastin, but really need a break from the heavy chemo. I also need a longer term solution and hope to get this beast into longer term remission.

I'll keep my status posted here. Anyone else who wants to join in, please do

cb

[eleven11]

Did he recommend the ADAPT therapy knowing you have a Kras mutation? My mom has this too. I've read on the message boards that he orders genetic testing to determine if this therapy would be beneficial for the patient.

[Sophy]

I am doing this protocol with Dr Lin liaising who is liaising with my oncologist by email even though I am not part of the trial so he is giving his advice for free which I am very grateful for.

From this round I will be taking 200mg celebrex twice a day every day and 1000mg xeloda twice a day for two weeks then a week off. The dose has been reduced because of hand foot. Strangely I didn't get hand foot probs when I was on a higher dose of xeloda with radiation and with oxy.

However, with this dose reduction I am pretty confident that I will be able to get through the 3 years Dr Lin recommended to my onc. Assuming that I don't get further growth whilst on this therapy.

My oncologist cheerfully says I can do iri when I get the next recurrence - so she doesn't think that this will work but is willing to humour me and prescribe the required drugs for me.

I don't have a family history of heart problems and am fit and normal weight range so my doctors arent worried about the possible side effects of the celebrex. I am not worried either, I think that the cancer is more likely to kill me than heart problems so I am willing to take the risk.

Sophy

[Cb75]

Thanks for the info Sophy, it is really helpful. I don't know why, but i'm having a harder time processing things lately. It's taking more time to research and make decisions. I have really awful chemo brain.

Dr. Lin mentioned to me that he has seen 'very good results' with people who have the KRAS mutation, this is a good thing for those of us with this mutation and limited chemo drugs.

cb

[KWT]

I wish I'd had a more encouraging visit with dr Lin. It wasn't really discouraging he had my genetic testing results and just said a couple of the mutations worked with adapt. Then I was told take some Folfiri and see me later I just didn't leave his office skipping down the street full of renewed hope.

My local onc just wanted me on xeloda for a while and I added celebrex. I should contact Lins office eventually.

I liked dr Lin very much but I just don't think he's von helsing with the silver bullet we're looking for maybe I'm wrong.

[rp1954]

If people could get started early on blood tests with an adequate suite of biomarkers (e.g. best 2 selected from CEA, CA19-9, CA72-4 pre-surgical baseline; plus ESR, LDH, MCV) at several week intervals, they'd likely know very fast whether ADAPT was starting to work in 5-10 weeks or whether they still needed something more to make oral chemo work.

[seasnail]

Great idea for a thread.

My husband has been on ADAPT for a while. We happen to live in Seattle and happen to go to SCCA where Dr. Lin happened to be the onc we were given when we scheduled our appointment back at diagnosis last year. Feel very lucky about that.

He started on ADAPT with radiation back in January after 8 rounds of chemo, then was off for a little while in preparation for surgery in May. He began again in June and has been on it ever since. So far so good with CEA/CA 19-9 and scans, so fingers crossed it'll continue. He has had some hand foot (mainly on his feet) so we are reducing dosage though.

Please let me know if you have any questions about this (granted I do only have limited knowledge about a lot of this) and I will also try to update back here as well as time goes on.

[rp1954]

...I just don't think he's von helsing with the silver bullet
It is clearly a silver bullet for some and probably a targetable therapy like KRAS and Erbitux, but cheaper and better. Some will need extra silver bullets and biomarkers to do the job, and some are just too late or SOL on the particular mutations for celebrex.

If extra are needed or SOL, moving fast and then trying something else seems logical. Taking more data, like the frequent blood biomarkers and chemosensitivity testing, finding someone with some insights, are part of moving faster finding more silver bullets and shooting straighter. Oncology has typically limited itself to 2-3 shots, slow to draw, and not well aimed. I think more would be survivors if they were more like a gunman with a quick draw "bad attitude", practiced trick shots even when everyone laughed at them, bought target grade hollow points, studied the best gunmen, carried two 45 six shooters with an ankle gun and an extra knife, and used them ruthlessly.

In a showdown with a known pathological killer, playing by artificial, over manicured rules and
saying, "Stop or I'll toot" just gets you killed. ("Stop or I'll toot" like Bobbies of yore?)

[Awreed]

I just started ADAPT today! My local Onc in DC is buddies with Lin and they are working together on my plan which seems a little different then what I've been reading. I will have Avastin every three weeks. Also, my adapt is m-f, no weeks off. starting at 3,000 mg xeloda, 200 mg Celebrex. I will keep all posted on scans and blood markers.
Andrew

[Cherie]

Hey Kenny

I wish I'd had a more encouraging visit with dr Lin. It wasn't really discouraging he had my genetic testing results and just said a couple of the mutations worked with adapt.

Did he say what mutations did work with Adapt?