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by AngelaN
Sun Jul 16, 2017 9:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Laser for lung mets
Replies: 2
Views: 700

Laser for lung mets

Hi,
A few years ago there was a lot of discussion about patients going to Germany to have laser treatment by Dr. Rolle or UK Dr. Ladas. Wonder if anyone has pursued either of these options lately? My husband has a lung met that did not respond to radiation.
Angie
by AngelaN
Sun Dec 18, 2016 10:20 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80658

Re: TIL Immunotherapy at NCI

Hi everyone, Time to post an update on my husband's progress in the trial...It's been a crazy month.... So he had his harvest surgery on Oct 20. Did great, home in 3 days (4 days earlier than they expected). In mid Nov we heard that his cells were not growing and they suggested we find another optio...
by AngelaN
Mon Nov 14, 2016 5:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL trial - no growth?
Replies: 2
Views: 364

TIL trial - no growth?

Hi, For those of you who have participated in the TIL trial - is anyone aware of someone whose cells did not grow???? We got a call today that my husband's cells are not growing. Not sure why. Does this happen? Could they just be slow? UGHUGHUGHUGH. Really disappointed. Super really disappointed. Re...
by AngelaN
Sun Oct 23, 2016 7:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80658

Re: TIL Immunotherapy at NCI

Home! We have had a difficult decision to make. We have options at Hopkins for other trials. During the rounds Dr. Kummala was dancing around the issue of what to do in the meantime. I told him that it didn't make sense to me right now to start chemo. Johns cancer has been pretty slow growing. So we...
by AngelaN
Thu Oct 20, 2016 7:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80658

Re: TIL Immunotherapy at NCI

Checking in...John had his tumor harvest today. The surgeon was concerned they would have to do an open procedure because of the location and the adhesions from SBRT, but all went well and they were able to get it easily via VATS. They did find some pleural mets and one of his mets is wrapped around...
by AngelaN
Sun Oct 09, 2016 8:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rant – Parents!
Replies: 20
Views: 2167

Re: Rant – Parents!

We have learned that you only tell people what you want them to tell others. We communicate a lot but only what is okay to share. So after a doctors appt - we just post on Facebook. It takes the wind out of the gossiper's sails because everyone already knows what she knows. AND it may be a partial t...
by AngelaN
Sat Oct 08, 2016 3:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80658

Re: TIL Immunotherapy at NCI

Update - John had his MRI of brain and aphoresis this week along with consult with thoracic surgeon. He is going to have surgery 10/20 for tumor harvest. It was an interesting visit - the surgeon went out of his way to tell my husband how risky this was, he already has a L upper lobectomy, so puttin...
by AngelaN
Sun Sep 25, 2016 7:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: When to participate in clinical trials?
Replies: 6
Views: 749

Re: When to participate in clinical trials?

This is a tough decision. Our onc and I finally agreed that when we had exhausted the "standard of care" and there was further growth or no change would be when we would start the process. And that's exactly what happened. He had A series of FOLFOX + Avastin, then multiple surgeries for tu...
by AngelaN
Sun Sep 25, 2016 7:30 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80658

Re: TIL Immunotherapy at NCI

DAS43 - My husband andI will be there at the same time. Maybe we can catch up!
Angie
by AngelaN
Tue Sep 13, 2016 5:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80658

Re: TIL Immunotherapy at NCI

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 ...
by AngelaN
Tue Sep 13, 2016 11:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Read my sig, and yay me for current status!
Replies: 27
Views: 1586

Re: Read my sig, and yay me for current status!

Awesome. Super awesome. DH continues to have lung mets - TIL trial eval today
by AngelaN
Mon Sep 12, 2016 8:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 544
Views: 80658

Re: TIL Immunotherapy at NCI

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 bea...
by AngelaN
Sat Jul 23, 2016 8:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Btw - collapsed lungs?!
Replies: 18
Views: 1185

Re: Btw - collapsed lungs?!

Just to clarify - atelectasis is not technically a "collapsed lung". Atelectasis is when you do not take deep enough breaths (especially due to pain, illness, sitting in bed) to inflate your lungs. Use the incentive spirometer like they tell you, sit up in a chair instead of laying in the ...
by AngelaN
Sat Jul 23, 2016 8:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Mother in law
Replies: 6
Views: 618

Re: Mother in law

I could write a book with what my MIL has done TO HER SON (so it's not just MIL - its mothers too). We just decided we needed to edit people out of our lives who were hurtful or not helpful or supportive. Haven't spoke to her since Xmas Eve when she "disowned" my husband for bringing up th...
by AngelaN
Sat Jun 25, 2016 8:55 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newly diagnosed and scared stiff
Replies: 25
Views: 2356

Re: Newly diagnosed and scared stiff

I think others have said it but please make sure you do this first. NO SURGERY UNTIL YOU SEE AN ONCOLOGIST. Surgeons want to cut. Oncolgists want to save your life. You need a CT and staging PRIOR TO SURGERY. Surgery may be the WRONG option depending on your stage. PLEASE promise us...oncologist FIR...

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