ADAPT - Dr. Lin ONGOING Thread

[Cb75]

He mentioned KRAS mutants do well. Thats all he mentioned to me. This is also the only mutation that I think I have.

Is there anyone on ADAPT or thinking about going on it with some residual disease? I hate to admit, but I'm afraid to get of FOLFIRI. My last two scans showed reduction in my lung mets and nodes. All lymph nodes are now normal and I have some spots in my lungs. I'm not sure how much but have been told that 'if they shrink more they will disappear". I've put off reading my scans lately as they cause so much anxiety. I'm not sure if I should get a new scan now, or wait until January. Such a tough call when you are acting outside of the standard of care....

cb

[CRguy]

Listen to your heart … and go with your gut Carm.

Harmony
CR

[janderson]

He mentioned KRAS mutants do well. Thats all he mentioned to me. This is also the only mutation that I think I have.

Is there anyone on ADAPT or thinking about going on it with some residual disease? I hate to admit, but I'm afraid to get of FOLFIRI. My last two scans showed reduction in my lung mets and nodes. All lymph nodes are now normal and I have some spots in my lungs. I'm not sure how much but have been told that 'if they shrink more they will disappear". I've put off reading my scans lately as they cause so much anxiety. I'm not sure if I should get a new scan now, or wait until January. Such a tough call when you are acting outside of the standard of care....

cb

I have been doing ADAPT and Irinotecan for several months. I have cryoablation for 2 tumors on 12/8 and a scan on 12/2. I seem to have a few spots other thatn the ones that are going to be ablated that come and go, shrink, and grow from scan to scan so I am considering just ADAPT if the scan results are good and after the ablation even though most likely any small spots that might light up this scan are metastatic disease. I don't want to go back on irinotecan at least for a little while. I have done 50 rounds of chemo over the past 9 years on and off.

[Cb75]

After talking this over with my ND (I have already spoken with my Onc), I think I'll wait until my next scan in January. If it looks good (which I am hoping as my last two scanned showed reduction), then I'll give it a go and go and see Dr. Lin and try it out. I'm getting comfortable with the idea that the spots are there, lets give it a go and see what happens. If they grow, i'll go back to FOLFIRI and Avastin (I know there are chemo resistance issues, but I have been on it for nine months straight). I'm making peace with my cancer, I just hope it will make peace with me.

Please keep this thread going, I really would like to hear any updates or thoughts. I really appreciate everyones comments We can help each other out.

[KWT]

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?

Cherie I don't remember which. I just have like five mutations and he just said a couple were ok for adapt. I need to get back up there and see him. I think I had some unreal expectations regarding the adapt.

[Cb75]

I'm doing some research....here is a quick press release on ADAPT from 2012, for a summary of what this is for those who may not have the information.

http://www.reuters.com/article/2012/07/ ... BW20120706

cb

[Cb75]

Here is a question and answer with Dr. Lin and someone else, it refers to hand and foot quite a bit, as well as the science behind the combo.

http://www.colorectalcancerupdate.com/e ... ard_sp.htm

Is anyone here on full dose chemo and celebrex? I'm now thinking about trying to add it in before my next scan....I can ask Dr. Lin, but am curious if anyone has any information. I did notice in the above Q&A, he mentioned a clinical trial with high dose chemo, to see if its more aggressive. I haven't read anything about his recent trial, so I don't know what the parameters are. I'll find it

cb

[Cb75]

A more recent PR...

"To date, approximately 150 patients have been treated with ADAPT therapy, and a total of 43 will be enrolled in the phase II study funded by Gateway. 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. Even more encouraging is that ADAPT therapy has extended patients’ lives to a median survival of 92.7 months in this group of patients, all while avoiding the traditional and more toxic regimen of intravenous chemotherapy."

http://www.prweb.com/releases/2014/04/prweb11786736.htm

[Julie YW]

I've been considering ADAPT as a maintenance regimen to preserve my NED status. My onc was open to it and finally touched base with Dr. Lin last Friday. Dr. Lin told my onc that he thought responders have the Pi3K mutation (which I don't have), although Celebrex does "down regulate" (whatever that means) sox9 (which I do have). He is not sure I would not benefit from the protocol since his protocol doesn't allow for HIPEC recipients. I also have an additional complication in that I have a suspected allergy to Bactrim (a sulf-based medication); those with sulfa allergies are likely also allergic to Celebrex. So my next step is to go to an allergist to be tested for that and other allergies.

[Cb75]

I've been considering ADAPT as a maintenance regimen to preserve my NED status. My onc was open to it and finally touched base with Dr. Lin last Friday. Dr. Lin told my onc that he thought responders have the Pi3K mutation (which I don't have), although Celebrex does "down regulate" (whatever that means) sox9 (which I do have). He is not sure I would not benefit from the protocol since his protocol doesn't allow for HIPEC recipients. I also have an additional complication in that I have a suspected allergy to Bactrim (a sulf-based medication); those with sulfa allergies are likely also allergic to Celebrex. So my next step is to go to an allergist to be tested for that and other allergies.

This is interesting. He didn't mention this mutation to me. I did mention that I don't think I have any others, but for KRAS. Did he point you to any of his research? I'm meeting with my oncologist to discuss this. Any indication that his protocol might be helpful if you don't have the mutation?

My plan is to meet with my onc this week to discuss, then to have another discussion with Dr. Lin. He should have all of my reports and scans now.

cb

[KWT]

I didn't think the lack of the p13 mutation was a deal breaker just those with it may have a better response

[skypup]

Thanks for keeping this thread going. I don't have much info to add -- sorry! The little info I have to add is about the APC gene, which is mutated in 70-80% of sporadic CRC tumors and 90% of FAP cases. In the genetic testing report I received from Foundation One, they say that APC seems to activate the Wnt-pathway; Wnt-signaling is reduced by celecoxib. So that is a potential plus...

Please do let us know what you find out from Dr Lin, y'all, and what is up with the P13K. Thanks!

[Cb75]

I met with my oncologist today to discuss my discussion with Dr. Lin. There are a few issues that I need to work through and I am open and welcome to any comments or thoughts.

1. My oncologist has taken the initial position that since FOLFIRI and Avastin are working, he doesn't recommend me switching to the ADAPT protocol. There is of course the risk that ADAPT won't work as well as FOLFIRI has been, there is also the risk that if I choose to try ADAPT and then go back to FOLFIRI it may not work again due to multi drug resistance.

2. There is a coverage issue here in Ontario regarding Avastin. If he takes me off of Avastin, I cannot get back on. OHIP (My Ontario/Provincial/Government insurance only covers it while it is given consistently. If I want to get back on I will need to pay out of pocket, or plea with the government. They are not easy to persuade.

3. I could get a prescription for Celebrex, as recommended under the ADAPT protocol and add it to my current chemo combo of FOLFIRI and Avastin. The concern here would be side effects. My oncologist mentioned some studies a few years ago that show exacerbated side effects of Celebrex with FOLFIRI. In addition the Avastin issue causes additional potential side effects due to bleeding, etc. that Avastin already provides. The side effects are bleeding, heart problems and sudden death. He also has concern about the dosage of the Celebrex. He is somewhat agreeable to providing me with the Celebrex as an addition to my current protocol. It was strange because he did make an off comment that he would only recommend a partial dose, maybe every other day. However, he went on to say that if I choose to take the larger dose without his knowledge, this would be my choice. I found this comment odd.

I also received a call today from Dr. Lin's office. They were having issues with my hospital in terms of getting access to my liver biopsy slides. They actually perform an additional pathology to insure that the original diagnosis was correct. I need to decide if I want to incur this additional cost. I'm thinking it might be worthwhile just to get another institution to take a second look.

cb <3

[KWT]

Carmen do your side effects get worse with each round of folfiri? If you're handling it then why change now as things are shrinking nicely? The adapt may give you a better qol while on chemo. I think oncs are just not so excited about adapt at this point so they're not going to encourage it.

[Cb75]

Carmen do your side effects get worse with each round of folfiri? If you're handling it then why change now as things are shrinking nicely? The adapt may give you a better qol while on chemo. I think oncs are just not so excited about adapt at this point so they're not going to encourage it.

Kenny,

My side effects are surprisingly getting better and better each round. I have been doing a lot of mental work. My biggest issue is anticipatory nausea and just being in the infusion centre. I get sick walking to the chair. I now ask for a room where I can close the door and lie down. Once I get home, I"m pretty much OK by day four. My concern is trying to target the stem cells. Ultimately, the science behind the use of the Celebrex is similar to using tumeric/curcumin, aspirin, or cimetidine. My understanding is that they all work along a similar mechanism. I'm going to add back more cimetidine. I already use a baby aspirin and the cur cumin. The cimetidine actually made me feel a bit sick and dizzy. I feel like there should be something more....

cb <3