Working that bucket list...

[mackswife]

Two weeks ago we learned that Folfiri and Erbitux had failed to stop DH's cancer from progression. Xeloda and Erb. had failed before that. In the past few months, DH's CEA has risen from 6 to 23.4. Our onc. has recommended going back of Folfox with or without Avastin...a regimen that kicked DH's tail when he went through the full 12 cycles in 2012. Neither one of us see this as a viable long-term option, although DH has said he might "try" it at a reduced dosage for a little while. In the meantime, we decided to let him take a chemo break and head to Italy to visit our son, daughter-in-law and granddaughter "one last (gulp!) time. We literally threw some things in a couple of bags and left the country within days of making the decision to go. We're here now...enjoying every. single. minute!

However, on the day we received the news about the Folfiri "fail", we called NIH to inquire about the TIL trial. We were sent a questionnaire to fill out, and sent that back in immediately. Within days, we received a call from a research nurse who asked a few more questions and said she would send a kit containing a vial to collect a blood sample. That sample was sent back to NIH the day before we left the country. Our local onc. co-signed the consent forms and agreed that this trial might be a good (although) difficult option for DH.

We are caught in that long in-between place....inbetween wanting to hope, and being afraid to hope. Right now we are really, really trying to live one day at a time and are grateful for these "good days" right now. I'm trying to memorize every second of it.....keeping our focus on the gift of the moment, but being watchful for the hard edges.

Thinking of you all, Pattie

[Sleen]

There's an on-going thread that I hope you'll consider posting in about that particular trial:
viewtopic.php?f=1&t=49736&hilit=TIL+immunotherapy

Best of luck! Italy sounds absolutely lovely.

Celine

[mackswife]

Thanks for the suggestion Celine. I just submitted a post on the TIL thread. I've been checking in on a regular basis to see how you are doing. If you don't mind my asking, where are you in the process right now? And how are you doing over-all?

[Sleen]

Hi Pattie,

Thanks for asking. Right now, I'm in the Patiently Waiting stage.

I'm feeling good. Surgery (VATS) scars are healing well.
My case is a little unusual in that I haven't been on chemo for 13 months. The tumors in my lungs are growing very slowly, so the docs at NIH gave me the OK to refrain from taking the xeloda that is sitting in my medicine cabinet during this waiting phase. So, I've got excellent QoL right now.

This week I received word from my doc at NIH that my TILs are growing well. (happy dance) The tumor DNA has been sequenced. I wasn't told how many mutations there are, but the current step--the one we're waiting on right now--is for the mutations to be morphed into "tandem mini-genes" (TMGs) then introduced to "antigen presenting cells". This will likely take several weeks, up to a couple of months and is done at an outside lab (if I understand correctly).

If all continues to go well on the doc/scientist end of things, I expect they will call me back to Bethesda in June.
Meanwhile, the boys and I are working hard to finish up the school year before I have to leave (the girls don't answer to me for school anymore).

Celine

[mackswife]

To Celine - We're so early in this process, and don't understand all the specifics yet. It sounds like the timeline is much longer than we thought, based on what you're telling me. DH's cancer is progressing rapidly, and he wouldn't be able to go that long without chemo. We're actually in Italy visiting family right now...DH is on chemo break after failing last regimen. Next step is to go back on FOLFOX (which he HATES) and would rather avoid...but it may be necessary just to give him some time to get to the trial (if he's a candidate at all). If FOLFOX failed, hospice would be the next step. We'll just have to see how everything unfolds. Blessings to you,

Pattie

[Sleen]

For this trial (TIL at NIH) they want the pt. to have one month of no chemo prior to removal of a tumor for the study. After surgery it's typical that the patient would go on some sort of chemo under the care of their current oncologist while the processing of the cells and data is happening at NIH.

I was told to expect a 3-month wait from after surgery to start of treatment. Most patients would resume chemo during that time.

When you see the docs face-to-face they may have new or different information for him based on his particular circumstance/health. If you get to the in-person screening stage, a set of scans and MRI will be done. That same day, you'll have a pretty good idea of whether he's a candidate, after meeting with one of the attending physicians.

I sincerely wish you good luck in your decision-making process. This is heavy stuff.

Celine

[Rob in PA]

Best of luck when you get back in the States...keep working that bucket list .
good thoughts to you from pa