The needle biopsy was a no-go due to vessels running through the tumor. So we were left with three VATs options: wedge, segmentectomy, or lobectomy. I did not think they could do a wedge with the vessels the way they were, and it may not have removed the whole tumor, so that was a bad option. The su...

I'm sorry to hear you are stressing about your scans. We trust nobody and get copies of all of her scans when they are performed so we can track them ourselves. But I know that the radiologists have better software than we get with the scans, so they can compare the same tumor, over time, on the sam...

I feel like we can finally stop holding our breath waiting to see if this will work. Every one of Sleen's tumors is shrinking. The PET scan last month left me worried that one of the tumors might have slipped by the TILs, but now it is smaller than last month. For those thinking about this trial, Sl...

I don't agree that a pet is worthless for a module under 2cm mine lit up at 8mm. Also I don't think I'd wait till something was 2cm to deal with it. I went to stanford (pretty good place) and they plucked out my nodule via vats for biopsie. It's the only way to know for sure. Not to scare you but i...

Our onc said that the lower the primary is in the colon/rectum, the more pathways for lung things. Of course, cancer doesn't follow rules, but it certainly was confirmed multiple times for Sleen that she has colon cancer mets to her lungs and nothing anywhere else. But we spent almost four months co...

I am so happy to see that UM has a trial for your husband. We have been very worried about you. Good luck.

So Tom, can you confirm one of the things in the paper you linked for Niki. In our discussion with one of the research fellows at NIH, he said that since Sleen only has 62 mutations, she would be MSS (even though they didn't specifically test for MMR). He said that MSI tumors typically have hundreds...

The ONLY worry I have about the trial is the 12 weeks with no treatment at all. The 4 weeks until the biopsy shouldn't be a problem but the additional 8 weeks for the cells to grow is the issue. 3 months is a long time. Did they tell you he could not have chemo between the tumor removal surgery and...

My DW Sleen failed to suggest the trial she is currently participating in. If you plan to be on a chemo break until December anyway, you may be a candidate for NIH TIL trial NCT01174121. Her results have been amazing so far, but she has been the only colon cancer patient to respond (so far). The hop...

The chest x-ray or ultrasound won't tell you any more than the CT, and a PET scan will be inconclusive for any met below 2 cm. 3 mm is really small, and the mets grow pretty slow, so if you don 't mind some math... Say the volume of the tumor doubled every 30 days (which would be fast growing), then...

Here is a link to the trial Sleen is in: https://www.clinicaltrials.gov/ct2/show/NCT01174121 I don't know how to link the her treatment thread on the phone I'm typing this on, but if you search for her or "NIH" you should find it. She also has a blog that explains it in some detail. The th...

So, this is interesting, but confusing. I would like to know more about the difference between Killer T-cells and Natural Killer cells. He seems to be saying that the autologous natural killer (aNK) cells only exist in 15% of the population, and that this company has harvested and cloned a populatio...

I'm so sorry you are joining us, but welcome. Your mother's condition is "K-Ras mutant", so you are right that EGFR drugs will not help. My DW Sleen is the same status with mets to lungs, and we are strong advocates of looking into trials for options since the standard next-steps would be ...

Hmmm. I would suspect that something did not line up in the HLA blood test. They suggested that Sleen might qualify for as many as five different studies, but that was only after the HLA test confirmed that she was compatable. The second time they told her "no" they said she might quality ...

Hi Cindie, I'm so sorry to hear about DH progression. The trial that Sleen is in may provide options, especially since Foundation One testing is completed already. While the treatment has its side effects, the people at NIH are great, and they pay for all of the patient's care and expenses. If you h...