The Colon Club

Thank you for the links! I will be searching them...after I process today's news a bit more.

NCI did tumor staining to determine my eligibility for ESO, MAGE, and MESOTHELIN trials, but they all came back negative. They told me they would forward my records to the G.I. team, upon my approval.

They said I should scan again in 6 to 8 weeks and try a third time. Now the decision is whether to start Xeloda right away, or wait until the next scan. I have had no chemo since early March last year, and this is weighing heavily on my mind.

Xeloda at not a too high dose may be a good idea, something to do until the next step. You may add some adjuvants (celecoxib, PSK, a high dose vitamin D, etc.)
Time to regroup, hang in there ((Sleen))
My best thoughts for you!

lilacbreastedroller wrote:Earlier in this thread, Maia posted an article about a woman in Montana named Melinda Bachini. I"ve been responding to my friends with an slightly different article about her, which explains the science in very simple language:
http://www.nbcnews.com/health/cancer/ne ... er-n100811

Great article, so heartwarming. I hope the "little karins" are growing!!

pollo65 wrote:By far the best video I have seen in a long time, perfect for visualization!
Pollo 65

Exactly my thought, Pollo! Wonderful for visualization/imagery.

The rejection note attached to my latest scan read, "No resectable sites..." which did not sit well with me, because I've been tracking my own tumors for months. I asked NCI to consider a particular tumor at the base of my left lung. Dr. Goff agreed to have the thoracic team review my scans.

The team agreed that I do have a suitable tumor, and therefore am a candidate for the trial!

I went from "in", to "out--try back later", to "out", and now back to "in". Crazy path, but I like where it's going. Surgery will take place exactly 3 months after my initial call to NCI.

I consider this an answer to prayer, and a great example of how we MUST advocate for ourselves.

Celine

Fantastic! Congratulations! I was impressed by Dr. Goff, so I"m not surprised that she got you in. Or, as it sounds, YOU got you in. Way to go. Seems it was meant to be. So when is your surgery?

Are we brave and bold or what? The point of this study, I think, is to find mutations in our tumors that are present in the cancer only so that T-cells can attack the cancer and not our healthy cells. While everyone I"ve asked at NIH says that cancer is so personalized, I hope that a mutation equivalent to the "one ring that rules them all" can be found that is present in everyone's colorectal cancer, and either T-cells can be engineered or some "sideeffectless" chemo developed (yeah, right) to destroy it. And we are the lab rats to help find this. I hope more colorectal patients volunteer, especially folks that beat the survival odds perhaps due to strong immune systems.

Apparently one of the two colorectal patients mentioned in the articles about Melinda Bachini was given his T-cells this month (which could mean that it took ten months for everything to be ready - yikes - since the Bachini articles made the papers back last May). My tumor tissue is out for analysis right now, so I'm just waiting for results, if any. They said they'd bring me in for a check up at the two month mark... wow. Long time. But I"d rather they take the time with the research, than rush and miss something. If they accidentally pick a mutation that is present in the healthy tissue and inject me with programmed T-cells, I could be destroyed from the inside out. that would be gross and worse than flesh eating bacteria.

well - three cheers. Maybe we'll meet in person.
all the best
Karin

Surgery is scheduled for March 19. I am to arrive March 18, but haven't rec'd the full itinerary yet.

Celine

So, can you look into clinical trials on your own without having your oncologist involved at the beginning? Right now my husband's tumors are shrinking from the Folfiri and Avastin combination, but we don't know for how long. I'm very interested in the immunotherapy clinical trials. Just hard to know when you should depart from the standard chemo regimen to a clinical trial.

Wow, you gals rock! I hadn't read this thread until tonight and am just so pleased to see what y'all are up to! I've been running over in my head whether it is time for me to try another immunotherapy trial and you are giving me some hope and motivation.

Thank you so much for sharing your info!!! And Maia, you are--as always--awesome!

Celine, congrats, you made it!

Ceebo, here is what Maia posted before about immunotherapy trial finding:

"http://cancerresearch.org/cancer-immunotherapy/clinical-trial-finder

(you can also create a profile and explore the results by yourself)

or

http://www.theanswertocancer.org/ (scroll down)

"Find a trial by phone
1.855.216.0127
Hours you can reach us
8:30 AM - 6:00 PM ET (M-F)"

They will help you to find a trial that is right for you. Hugs, Vilca

Skypup - put your hat in the ring for this one. Why not? The more colorectal patients the more data, and the better for all of us. I double dog dare you.

Ceebo: re: when to choose a trial. I started trials (this is my second) when the standard chemo drugs stopped working, and I was running out of options. That drove my decision to do this. As you can see from my tag, I've had all the drugs. I'm KRAS wild so can't have vectibix. The only drug I haven't taken is zaltrap, which is an avastin like product and I think is given with other drugs that I"m resistant to anyway. while I"d love a cure, I'm focusing on life extension right now, in increments, and of course quality of life.

You can also go to the clinical trials site directly and search yourself, without an intermediary: www.clinicaltrials.gov This is a global database. You've probably used search engines before - click on advanced search, pick certain terms to search for (i.e. immunotherapy, colorectal, check the box for open studies only, etc). I found several trials in Barcelona Spain - wouldn't that be nice to do during this harsh East Coast Winter??? The titles of the trials are very academic so sometimes it can be tricky figuring out exactly what each one is testing... Even this trial's title does not give the entire picture.

You can certainly research and sign up for trials on your own. I have a very supportive oncologist and if I find a trial that looks interesting, I send it to him and his team first a) so they can interpret the title and tell me what it is all about (!!!), and b) they can tell me if it would be good for me. It helps if your onc team is supportive because they must send paperwork to the research facility.

re: timing. In the "inclusion/exclusion criteria" of the trial announcements, for ethical reasons most require patients to have cycled through standard treatments - you'll have to read these sections carefully to determine eligibility. On the other hand, some of the randomized trials don't want patients to have taken certain drugs, as they are testing new products' effectiveness compared to standard therapies. Each trial is different. For instance, this/the TIL trial says:

"All patients must be refractory to approved standard systemic therapy. Specifically :

Metastatic colorectal patients must have received 5-FU and leucovorin in combination with either oxaliplatin and/or irinotecan,
since level 1 evidence support increase survival with these regimens, compared to 5-FU and leucovorin alone."

I'm going to write a separate post about clinical trials, sharing what I know. Hope it helps people.

cheers
Karin

Ceebo wrote:So, can you look into clinical trials on your own without having your oncologist involved at the beginning? Right now my husband's tumors are shrinking from the Folfiri and Avastin combination, but we don't know for how long. I'm very interested in the immunotherapy clinical trials. Just hard to know when you should depart from the standard chemo regimen to a clinical trial.

Absolutely. My husband found this trial on his own, w/o any info from my oncologist. The staff at NIH refused to talk to him, however. They would speak ONLY to the patient. It just took one phone call to get things going. NCI is very efficient--they emailed a list of all the documents/images they required and I scrambled to get it all together as quickly as possible.

Found out this morning that March 19 will be the screening visit; not the surgery. Hopefully, I'll pass their screening tests/scans and will get a surgery date soon after.

Celine

Celine: where do you have to go for the screening? Are there many sites or just one?

I have to go to Bethesda, MD. I believe this particular trial is only being conducted at the National Cancer Institute in Bethesda.

Celine

FYI: Melinda Bachini just posted a youtube video about her cancer and experiences with this trial:

https://www.youtube.com/watch?v=rnUAo8PmQXQ

She is not NED, but is alive, fully functional and energetic, not depleted by chemo, and her tumors are still shrinking. She's survived nearly six years with her cancer.

cheers
Karin

Yaaaay...this is great. Thanks for sharing--watched it last night.
Very inspiring!