The Colon Club

AneglaN

Hope everything goes well!

AngelaN wrote:My husband is going to NIH tomorrow for evaluation for the TIL trial after having growth on a KRAS trial this summer. He has a few lung mets - all under a cm, so they are thinking he probably does not have big enough mets yet for harvest, but they want to see him. WOOHOO. Meanwhile he has been a beast tonight. I am going to assume he is anxious about the visit tomorrow, and not just being an @ss for no good reason. I'll keep everyone posted.

NIH has become our second home. The people there are just great. He has nothing to worry about as far as how he will be treated... they will take all the time and answer any questions you may have. You couldn't be in a better place. GOOD LUCK... they wiped out Sleen's KRas tumors.

Well what a place. Sleen is somewhat of a celebrity there...they asked me what I knew about the trial, and then when I told them I know of one CRC patient who is NED but had recurrence due to mutation of KRAS they were stunned (I reminded them that the cancer community is very small...so as soon as we walk out of there I'll be blabbing about the visit). I asked a lot of questions, asked about the lab issue last summer, asked about the MD Anderson option. The science sounds good and we were very impressed with the whole process and more importantly the physicians.
They feel he is a great candidate. They are fairly certain his tumor is large enough. He is physically in excellent shape. No real areas of concern. They told us to keep looking for other trials too. And they asked me to pass along not to make this option the "last resort". They want more patients that have other options. We are excited. I hope we are not jumping the gun. He will get Kaytruda during the treatment (new addition since the summer) so it will preclude him from further immunotherapy trials.
Let me know if anyone needs any info.

wooHOO! That is awesome. I am SO GLAD that they told you to let people know to not make this option a last resort. I could not agree more.

Are they making plans for the next steps? or are you two still discerning whether you want to give it a try?

Celine

Had my apt at NIH yesterday and heard from the Dr today. I am excepted into the study. Very excited and hopefull. I should hear back next week on a schedule to remove tumor. My doc also said that they see small tumors that were not in my lungs in August. He suggest after the tumor is harvest starting chemo for the months it takes to grow cells.

I was very impressed with the doctors and all of NIH.

wooHOO!
That's fantastic. Congratulations!

Best of luck to you!!!

Celine

Wonderfullymade wrote:I just heard back...the surgeon doesn't feel I am a surgical candidate at this time. She said to send scans and we will keep trying.
Thank you for continuing to keep us posted Sleen!

Hi Wonderfullymade -

Did they say why they thought you weren't a surgical candidate at this stage?

Considering this trial myself.

Jim

Jdmnyc
she said at this time, they would like the area to get a biopsy to be easy so recovery is quick, apparently mine are not. She did say every time I am scanned to send them and we can keep trying.
I would contact them for consideration, worse case nothing yet...but if you dont you wont know
best of luck to you!

Wonderfullymade wrote:Jdmnyc
she said at this time, they would like the area to get a biopsy to be easy so recovery is quick, apparently mine are not. She did say every time I am scanned to send them and we can keep trying.
I would contact them for consideration, worse case nothing yet...but if you dont you wont know
best of luck to you!

I think I'm going to do that - thanks very much!

I have Apts at NIH OCT 4th, 5th and 6th for pulmonary test, meet the thoracic surgeon and harvesting white blood cells. Excited and scared all at the same time.

DAS43 wrote:I have Apts at NIH OCT 4th, 5th and 6th for pulmonary test, meet the thoracic surgeon and harvesting white blood cells. Excited and scared all at the same time.

Excellent! I know just how you feel Let me know if you have questions. Do you know which surgeon you'll be meeting?

Very happy for you!!!

Celine

DAS43 - My husband andI will be there at the same time. Maybe we can catch up!
Angie

AngelaN wrote:DAS43 - My husband andI will be there at the same time. Maybe we can catch up!
Angie

That would be great!

You MUST tell us if you're both in apheresis at the same time

That would be pretty wild. Of course, we'd need photographic evidence

Celine

Had apt at NIH today for pulmonary test. Lol took an hour and 15min to go 25 miles! Fora 10min test. Glad I moved away from this area 10 years ago. NIH itself is great. Tmrw will meet with surgeon at 9am. Traffic will beat nightmare once again lol