The Colon Club

DAS43 wrote::D
Had my follow up at NIH today. The tumor has shrunk to 49.8% very happy and feel blessed. My next follow up will be in December.

That is so TOTALLY AWESOME!

Keep it up!!

Lee

Sleen wrote:

pdp497 wrote:On the Clinical Trials website it seems to indicate you only need to have failed one first line treatment but I have seen in other places that you need to have failed on at least 2 treatments first, do you know what the actual criteria is? Also thanks for taking the time to respond going through this process is so difficult and being at the beginning of it it helps to have people willing to give advice and let you know about the process.

Hi pdp!
At the .gov website under "Inclusion Criteria" it says (among other things), "...All patients must be refractory to approved standard systemic therapy. Specifically : Metastatic colorectal patients must have received oxaliplatin or irinotecan."

When I was accepted onto the trial, I had previously only undergone treatment with FOLFOX.

Celine

Hi Celine,

That is how I read it as well. I will definitely be checking with NIH if the oxaliplatin stops working or the side effects get to be too much. I also wanted to say congrats on your NED status people like you willing to undergo trials like this and achieve lasting success has given me so much hope in the difficult 2 months since my diagnosis. Thank you for taking the time to respond and be a resource to others.

pdp497 wrote:

Sleen wrote:"...All patients must be refractory to approved standard systemic therapy. Specifically : Metastatic colorectal patients must have received oxaliplatin or irinotecan."

When I was accepted onto the trial, I had previously only undergone treatment with FOLFOX.

Celine

Hi Celine,

That is how I read it as well. I will definitely be checking with NIH if the oxaliplatin stops working or the side effects get to be too much. I also wanted to say congrats on your NED status people like you willing to undergo trials like this and achieve lasting success has given me so much hope in the difficult 2 months since my diagnosis. Thank you for taking the time to respond and be a resource to others.

This is something of a rant; I’m sorry if anyone is offended.
That word "refractory" is a tricky one. It can be interpreted in different ways. On the most basic level, it means “been there, done that” and not presently doing it. A more strict medical interpretation would mean that you are no longer responding to the present treatment, so you need to move on to something else. Fortunately, NIH used the more lenient interpretation. But, they will not advise anyone to stop a treatment that may be holding a patient “stable”. To me, stable means that tumor cells are multiplying at the same rate that chemotherapy is killing them off. So, the patient is not winning the battle, you’re just waiting for the cancer to stumble upon a mutation that the chemo won’t kill. In the meantime, you get sicker and sicker from the chemo and the cancer, and if you get too sick, you can’t handle the trial. The nasty little secret is that they will take you if YOU decide you are done with chemo, but they won’t tell you that. They can’t tell you that. They must advise you to follow the advice of your doctors until your doctors have no more advice that can be reasonably expected to work. So jumping into this trial early would be Against Medical Advice (AMA).
I’m certainly not qualified to give anyone medical advice, and please don’t interpret what I say here as medical advice. But our experience with this trial was the result of Sleen’s personal decision to risk going AMA to find a cure, rather than following the path of “chemo for life” that conventional medicine offers. This is a hard decision and we know people who have died following this path. But we also know people who have died waiting for conventional medicine. It is a decision only you can make, and it needs to be based on your values, goals, quality of life, family situation, faith…

Hi Celine and others who have/are participating in the clinical trial of TIL Immunotherapy:

TIL Immunotherapy is indeed break-through type of technology for cancer treatment. I believe to date NCI have enrolled many patients for the trials.

I'd like to know if there is any info you know of about the number of patients enrolled and the number of patients responded or disease is in stable condition. Furthermore, how about those patients who failed to response? are they able to return to traditional cancer treatments?

Thank you,

Boswind

BTW, I started to search for clinical trials.

Hello Boswind,

Patients who did not respond to TIL therapy are able to return to traditional treatments. Some go on to do other clinical trials.

The number enrolled, and the number who responded are changing all the time. When I was on the protocol, my fellow told me that I was "one of 7 or 8" who were treated with targeted cells, but that was over two years ago.

If you pursue the trial, I hope you'll ask the research nurse these questions, and report back. My info is out-dated, but I know there was a breast cancer patient with an on-going response, and two CRC patients (DAS, and me). Melinda Bachini (cholangiocarcinoma) is currently stable.

Celine

Any updates on fellow board members currently in this trial. We are waiting on CT Scan mid November as to whether or not we will be participating.

I uploaded all the CT scans and sent over the medical records. But after doctor took a look at my CT images, they think I have all my lesions in my liver, not anywhere else, they do not want to resect a sample from the liver, as it is too risky. Ideally I should have some lesions in the lung or lymph nodes. Is this true? what is your reason to be rejected?

fighter168 wrote:I uploaded all the CT scans and sent over the medical records. But after doctor took a look at my CT images, they think I have all my lesions in my liver, not anywhere else, they do not want to resect a sample from the liver, as it is too risky. Ideally I should have some lesions in the lung or lymph nodes. Is this true? what is your reason to be rejected?

Was there a biopsy sample with your original CRC tumor?

How do you determine that you have HLA-C*0802 or HLA-A*1101? Is there a blood test for this? Or do they get it from a tumor sample?

My Wife's was a Blood Test for HLA

NHMike wrote:How do you determine that you have HLA-C*0802 or HLA-A*1101? Is there a blood test for this? Or do they get it from a tumor sample?

Prior to my first in-person screening, NIH sent an HLA Test Kit via Fed Ex. I took it to my local hospital, and a nurse followed the instructions to draw blood, and the hospital shipped it back to NIH using materials included in the kit. At that time, they were testing to see if my HLA matched one of the NY-ESO trials (I was not a match for any of them).

HLA is only a factor in Dr. Yang's trial (They are looking for A*1101, with a KRAS mutation).
Dr. Rosenberg's trial (the one I did--see link in my sig.) can potentially work with any HLA and any mutation, providing you have at least one tumor of sufficient size, and in an easily resectable spot.

Celine

fighter168 wrote:...they do not want to resect a sample from the liver, as it is too risky.

Who told you that? I would question this statement. I know that they have resected liver tumors for the purpose of growing TIL. It is possible that your particular tumors are in a dangerous location within the liver, however. I would ask for clarification on this point before accepting a rejection. Good luck!

Celine

Sleen wrote:

NHMike wrote:How do you determine that you have HLA-C*0802 or HLA-A*1101? Is there a blood test for this? Or do they get it from a tumor sample?

Prior to my first in-person screening, NIH sent an HLA Test Kit via Fed Ex. I took it to my local hospital, and a nurse followed the instructions to draw blood, and the hospital shipped it back to NIH using materials included in the kit. At that time, they were testing to see if my HLA matched one of the NY-ESO trials (I was not a match for any of them).

HLA is only a factor in Dr. Yang's trial (They are looking for A*1101, with a KRAS mutation).
Dr. Rosenberg's trial (the one I did--see link in my sig.) can potentially work with any HLA and any mutation, providing you have at least one tumor of sufficient size, and in an easily resectable spot.

Celine

Thanks for the information. I was thinking of having the testing done but unsure of where or how to do it but I'll ask my local oncologist next week if he knows. C*0802 seems to be associated with Europe, West and South Africa while A*1101 is associated with East Asia so the latter is more likely for me. C*0501 and C*1201 also bring G12D to the cell surface but there appear to be no trials for those HLAs. This stuff is just part of the backup plan. I have a treatment plan for Stage 3B and "just" have adjuvant chemo remaining. But I want to have alternatives if I get a recurrence.

NHMike wrote:

fighter168 wrote:I uploaded all the CT scans and sent over the medical records. But after doctor took a look at my CT images, they think I have all my lesions in my liver, not anywhere else, they do not want to resect a sample from the liver, as it is too risky. Ideally I should have some lesions in the lung or lymph nodes. Is this true? what is your reason to be rejected?

Was there a biopsy sample with your original CRC tumor?

I had surgery to remove the tumor in April. Now I got liver metastasis, multiple.

Sleen wrote:

fighter168 wrote:...they do not want to resect a sample from the liver, as it is too risky.

Who told you that? I would question this statement. I know that they have resected liver tumors for the purpose of growing TIL. It is possible that your particular tumors are in a dangerous location within the liver, however. I would ask for clarification on this point before accepting a rejection. Good luck!

Celine

I called again today. The nurse said that there is no resection site on the liver, it is too dangerous to remove a sample within the liver.