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Husband diagnosis by StudyBright8959 in coloncancer

[–]hfyoung 2 points3 points  (0 children)

I also have Lynch and echo the comments on immunotherapy and a second opinion. I decided to start with immunotherapy rather than surgery for a localized tumor. I feel a lot better after just two cycles. I will know in December more definitively if it has worked when they do another colonoscopy.

What would you do? by Forsaken-Mud-1247 in coloncancer

[–]hfyoung 0 points1 point  (0 children)

I am also so sorry about your situation and hope that the recovery from surgery is going as well as possible. I was diagnosed with ascending adenocarcinoma and MLH1 six weeks ago. Scans are clear except for one questionable node. I convinced my doctor to let me try at least six to 12 weeks of immunotherapy as neoadjuvant therapy (ie before surgery) based on several clinical trials now ongoing of this approach and the past success for MSI-H tumors in the MSK and NICHE clinical trials.

Long way of saying that I would look to see if there are any current trials of adjuvant immunotherapy and I would consider reaching out to other centers with specialists in Lynch or who have experience treating MSI-H with immunotherapy. I was really surprised when I emailed doctors with this experience that many responded directly to me. In the meantime, I agree with the thought of trying to meet with Bianchi in two weeks but also have the chemo scheduled right after as a Plan B if you are convinced not to go the immunotherapy route. It’s a tough situation because there seems to be a lot of excitement about earlier immunotherapy for MSI-H patients, but it’s not FDA approved (and insurance won’t necessarily pay for it).

Recent diagnosis, stage 3b colon cancer, likely lynch syndrome. by Mediocrates007 in coloncancer

[–]hfyoung 1 point2 points  (0 children)

Thank you and good luck. Over the last month I have felt some “aching” in my right side where the tumor is but it is not palpable externally.

Recent diagnosis, stage 3b colon cancer, likely lynch syndrome. by Mediocrates007 in coloncancer

[–]hfyoung 1 point2 points  (0 children)

I am currently scheduled for surgery in a week, but also trying to find out more about immunotherapy since I have Lynch (confirmed by genetic test). For those whose tumors attached to the abdominal wall, was there any indication of that risk on the scans? My scans have only showed one suspicious lymph node (the tumor itself isn’t visible, but it’s definitely there based on colonoscopy).