The Colon Club

Lol Kenny I wish I had an exotic reason why I chose that name! I think the one I had wanted was already taken and I had to think fast! I live in Florida and all my "real" treatment gets done at UF (that's were my GI oncologist is and where I had Y90 and surgery) - that is gator land - where the UF gators play.... I also sent my kids at Camp Kesem that was organized by UF students and I volunteered as their mental health professional so I felt some sort of tie with. UF!

I guess I should have used my blog name paddleboardgirl as I love stand up paddleboard! Oh well - never thought anyone would ask me!!!

Rachel

Ok, well I was wondering if you came from a long line of alligator wrestlers or something.

kennytwisted wrote:Should hear within two days if they take rats instead of mice.

LOL...I'm guessing that they do! Got my fingers crossed for you.

Celine

So.... how was it? How are you? Aren't the tempurpedics great? And the chow there?? (Sleen)

ooh, yes. These mattresses are wonderful.
Food's good too--no complaints! My i.v. was placed on the first try, and the nurses have all been friendly and helpful.
Saw the attending briefly yesterday, but was out having a procedure when they came by this morning. He had a FLOCK of doctors with him--newbies, I assume. "My" resident was in the pack, too.

Hubby is staying at the lodge, which is a huge blessing.

Celine

I recieved my vile to send off my blood today.

That's great news, Kenny!
Get those biologicals in the mail

Celine

I guess it is time to stop lurking here and post something so you can see the nice avatar Sleen made for me. The art work belongs to our daughter #2. This is my role in this deal, carrying the luggage for our little white mouse.

My DH has officially thrown his hat in the TIL trial ring. We initiated contact with NIH a couple of weeks ago, and have submitted the initial paperwork and required blood sample for testing. We are currently checking off our #1 Bucket list dream...another trip to Italy to visit our son, daughter-in-law and granddaughter. We're loving every minute of our time here, but realize the clock is ticking. DH is on a chemo break...xeloda/celebrex has failed; folfirir/erbitux has failed. If DH finds out he's a candidate for this trial, he will choose to go forward rather than return to FOLFOX, which he sees as a short bridge to Hospice Care. I'll try to post updates on this thread as they might be helpful for others who are interested in pursuing this particular path.

Pattie

I hope he gets in Pattie. We are progressing through the process. The people at NIH are great and we could not be happier with how they treated us. We just need those cells to grow and do their job.

Pattie - Good luck to your husband. I'm crossing my fingers that he gets in!

Has he tried Stivarga? Nasty drug but did me some good. Of course, if he gets into the trial, no chemo.

atb
Karin

We just sent in the paperwork to get started in the process for this trial, also. Will keep you posted on how it goes.

To DH2Sleen and Karin - Thanks for your well-wishes. We are currently in Italy visiting family and hope to have a message from NIH waiting when we return next week. To answer your question Karin - no, DH has not had stirvarga. Xeloda and Erb and Folfiri and Erb have both failed to stop progression. Onc. recommended going back on FOLFOX but told us to go to Italy first as he anticipated DH would be too sick to travel on FOLFOX. When our onc. found out we were interested in the trial, he encouraged us to proceed. But, he said he wouldn't recommend going back on chemo because DH needed to be as strong as possible to get through the trial. (Hope this makes sense....). Anyway, DH is feeling good right now, but we know his cancer is progressing rapidly. With the time lag you are telling us about in the trial, I feel certain he'll need to be on chemo to hold the line. I guess NIH will answer those questions if DH is a candidate. So far, we've only sent the blood sample back...haven't heard anything since then. Oh....one more thing for Karin - DH refused Stirvarga based on the fact that we haven't heard anything good about it. Man, this journey is tough!

Thanks so much for all the info you're sharing...it helps more than you know! Blessings to all....Pattie

I'm so excited to see so many people looking into this trial. Good luck to you all. Even though no colon cancer patients have been cured yet, I firmly believe we will start see complete remissions with this group of "mice". Sleen's progress through this trial has be perfect so far. Prayers for all of you.

They want me to come in for scans and resection on the seventh this happens pretty quick. Decision time.