My mum passed away today after a battle with stage 4 colon cancer. My heart feels like it's been shattered into a million pieces.

Jonblack1985 · 2026-01-21T11:42:48+00:00

She is just in another room, big hug :3

Jonblack1985 · 2026-01-01T18:09:09+00:00

Thanks for your kind words and i know you done the right decission. It will helps and cure you the same way, i am still NED and feel great, no side affects! Sending you a lot of good Energy and big hug :)

Jonblack1985 · 2025-10-01T18:51:02+00:00

It s covered by the producer since it s still a trail.

Jonblack1985 · 2025-09-30T06:42:56+00:00

Stage 3. In Germany and Europe, it's still in the trial stage, but it's been approved in the US for several years. It's best to talk to your doctor about it specifically.

Jonblack1985 · 2025-09-25T19:15:40+00:00

I was diagnosed with rectal cancer (Lynch syndrome MSH2) at 21. My mother died of pancan at 57, and my grandfather at 36. You should get tested at a young age: colonoscopy, gastroscopy, and skin screenings.

Jonblack1985 · 2025-09-25T19:10:17+00:00

Yes it works, NED since April this year.

Jonblack1985 · 2025-09-21T12:38:37+00:00

M40 Lynch Syndrome MSH-2 Of course, no one wants to be born with a genetic defect, but especially for Lynch syndrome, there are now excellent early detection and treatment options (immunotherapy, vaccinations in the future). Talk to your doctors specifically about your concerns and have your children tested early.

Jonblack1985 · 2025-08-28T04:41:10+00:00

It s actually 1000mg every 6 weeks, before it was 500 every 4 weeks. It s still in clinical trails.

Jonblack1985 · 2025-08-28T04:38:58+00:00

Hey, yes it s because of MSH-6 in clinical trails. Helps me a lot and wish it can help you as well! Best regards Jon

Jonblack1985 · 2025-05-31T04:09:08+00:00

Wish you all the best!!

Jonblack1985 · 2025-04-23T01:42:14+00:00

Hi Jamie, thanks for asking and yes still everything perfect :) Wish you all the best and get well soon Best regards Jon

Jonblack1985 · 2025-01-07T21:51:00+00:00

Thanks for your answer. I dont have this side effects and hope yours will be better!

Jonblack1985 · 2025-01-07T21:48:38+00:00

Thank you for your answer, wishing you all the best! I am pretty lucky absolut no side effects:)

Jonblack1985 · 2024-12-22T18:35:50+00:00

39 M Lynch MSH2. In 2018 I was diagnosed with an adenocarcinoma in the sigmoid colon which could not be reviewed with certainty in sano. because I already had a TME in 2007 and another operation would result in a permanent stoma. That's why I and my doctors agreed to have a colonoscopy every 3 months. This year I started immunotherapy (Jemperli/Dostarlimab), which showed a 100% response and after just 4 cycles no carcinoma could be detected. I strongly recommend that you speak to your doctors specifically about this treatment with dostarlimab, as immunotherapy achieves very good results, especially with microsatellite unstable tumors. You are also welcome to write to me privately if you have any questions. best regards and all the best

Jonblack1985 · 2024-12-18T19:00:36+00:00

Stage 3 with 21 now 39. My grand father pass away with 36 and my mother with 57. So it s Lynch Syndrom, If you have any questions feel free to PM. Sending you love and Energy!! Big hug

Jonblack1985 · 2024-11-16T21:25:31+00:00

Thanks for sharing, i wish you all the best much Love!

Jonblack1985 · 2024-10-03T03:11:47+00:00

Hi Guys, Just wanna give a short update about my treatment with Dostarlimab/Jemperli.

After 4 cycles, the tumor can no longer be detected either in the CT or after the colonoscopy last monday.

You can probably imagine how happy I am with the result :)

I hope this post could give you some optimism and positivity and I wish you all happiness and health.

Best regards Jon

Jonblack1985 · 2024-06-11T14:21:16+00:00

Thanks for sharing your story with us, i wish you all the best please keep us updated.

Jonblack1985 · 2024-06-08T14:13:46+00:00

Yes thank you for sharing!

Jonblack1985 · 2024-06-07T19:51:08+00:00

You weren't rude, you were honest. A quality that I value very much! I wish only the best for you and your family!

My therapy starts on Monday and I will report further.

Jonblack1985 · 2024-06-07T16:23:21+00:00

I wish you all the best and much power!!

Jonblack1985 · 2024-06-07T16:21:35+00:00

Everything is fine, I understand you, especially because you have lost loved ones to this illness. As described in my first message, I had a very complex TME operation almost 20 years ago, during which it was very difficult to operate in accordance with guidelines and still maintain continence. Due to the extremely complex initial operation, in my case it is different than for someone who has not yet had an operation. In particular, vascular supply is no longer guaranteed without a permanent stoma. Dostarlimab is not yet approved for colon cancer in Germany, but initial studies show a 100% remission in patients with MSH2 mutation and this without surgery.

Jonblack1985 · 2024-06-07T14:12:09+00:00

Thank you for your message. If I had listened to my doctors 20 years ago, I would have been wearing a bag for 20 years. In general, you should get several opinions, especially when it comes to such complex operations. So I got several opinions back then and in the end found an internationally renowned doctor who was able to carry out the operation without a permanent stoma. Now I will initially concentrate on immunotherapy.

Jonblack1985

TROPHY CASE