Sleen wrote:I'm back to report on Follow-up #13. Lucky 13
My scans show no signs of cancer! Bloodwork is good. Still NED.
They asked me to consent to a new study where they will do research on my T-cells. They'd like to figure out how to "turn back the clock" and revert them to a previous state, when they were stem cells. They want to know how/why my cells are behaving differently than some other patients' cells. I signed the papers--Patrick (DH2Sleen) signed as witness. I was assured that no apheresis would be necessary!
I got to meet another mCRC patient who will be starting the trial this week! Not sure if this person posts here or not.
The attending told us that they're working on changing the trial to use "young TIL" from the patients. They hope the young TIL will be more reactive. My understanding is that they'd use the patient's own T-cell receptors for this. I don't know the timeline for when this change is going to happen.
I'm due back in six months for follow-up 14.
Pro Tip: If you haven't yet tried Crystal Light powder in your iohexol, I highly recommend it. A very kind fellow-patient saved me from tossing my cookies in the CT waiting area on Monday by adding some flavor to my final cup of "juice". I know that some institutions use flavored slurries for their contrast, but NIH uses a clear, nasty-tasting (to me) watery contrast instead. It gets more and more difficult for me to swallow each time. I'll be packing Crystal Light from now on!
sharijohn wrote:... I am eagerly looking for a promising treatment for my mom. ...How was your experience? What was the response rate? Was it remission response for all patients that showed a response? Any inside on the gene mutations that could potentially benefit from this treatment? My mom is non msi-high stage iv with kras g12v mutation. Any suggestions would be helpful...
NHMike wrote:...it's nice to know that this is a possibility if I get a recurrence.
Sleen wrote:NHMike wrote:...it's nice to know that this is a possibility if I get a recurrence.
I agree! There is a lot more hope today than ever before! I think you're smart to keep reading and learning in case you might need the info some day. I'm hoping you won't need it though
jdepp wrote:I'm on my way back from Bethesda after an NIH TIL trial follow up. The first scan wasn't very good, so I expected to be dropped from the trial today, but the second scan was mixed: some lesions slightly larger, some slightly smaller, so I may be getting some benefit after all. I'm scheduled to rinse & repeat the scan in a month. Wishing DAS43 & all others the very best. /jdepp
sdino wrote:My Wife had lung wedge resection surgery this week 1/8/18 at NCI/NIH to harvest her TILs. Everything went well and today we will go home after she completes Aspheresis. Now we wait and see for 3 months if the harvested cells grow with the proper mutations. Incredible stuff going on down here in Bethesda, MD.
sdino wrote:Steps and timelines after TIL harvest Surgery:
1. After TIL Harvest Surgery = 2 to 3 weeks if cells are growing by the billions.
2. After TIL Harvest Surgery = 2 to 3 months in lab to see if TILs are reactive. - This is where we are at.
3. TIL infusion @ NCI = 4 to 6 week stay in hospital.
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