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by Wonderfullymade
Wed Mar 06, 2019 10:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Starting immunotherapy next week
Replies: 34
Views: 5142

Re: Starting immunotherapy next week

Greetings! Thought I would join in. I started Keytruda (Pembro) in Oct 2015. No other treatment was working and I was still experiencing disease progression, even after 2 surgeries. By the time I got on the drug my lymph nodes were what was left with disease. I was feeling pretty good not being on c...
by Wonderfullymade
Thu Feb 21, 2019 10:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 10 Years Today!
Replies: 22
Views: 2156

Re: 10 Years Today!

Love hearing these stories of hope! Thank you for posting!
Wonderfullymade
by Wonderfullymade
Tue Feb 12, 2019 7:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 24
Views: 3270

Re: Adjuvant immunotherapy

I think it was about 18 months of treatment before the colitis began. It was treated successfully with prednisone. Although I still have lights bouts of it kinda daily, nothing that stops me! It is not why I stopped. I hit the 2 year mark and had a clean PET and CT scan. It took almost 2 years thoug...
by Wonderfullymade
Tue Feb 12, 2019 2:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Adjuvant immunotherapy
Replies: 24
Views: 3270

Re: Adjuvant immunotherapy

I am also msi-h and 2 different types of chemo failed me as well! See my sig!
Wonderfullymade
by Wonderfullymade
Tue Feb 12, 2019 1:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda
Replies: 21
Views: 3148

Re: Keytruda

Hi Pyro, I dont know my PD1 score, but I am msi-h. The side effects I had on Keytruda were being tired, but....I felt quite good after the chemo I had been on, so I think its relative to where you are. The biggest side effect I had was a little over a year I started getting colitis ( actually procti...
by Wonderfullymade
Tue Feb 12, 2019 1:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 77
Views: 33783

Re: Switching back to Pembro

Cynthia...thanks for clarifying that!
Henry and Plastikos....I get that! I think for my own piece of my a “ booster dose” would have calmed me, but ...I was not offered that option!
I must add ...It is a nice problem to have!
Wonderfullymade
by Wonderfullymade
Fri Jan 18, 2019 8:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 77
Views: 33783

Re: Switching back to Pembro

Henry: I have no specific data but antidotally, my oncologist (the one prescribing the Keytruda) stated that if after 2 years on Keytruda I had any potential cancer evident in my body (via CT scan or via CEA) he suggested, based on past experience that we maintain the course and continue treatment ...
by Wonderfullymade
Fri Jan 18, 2019 8:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What to do after immunotherapy works
Replies: 11
Views: 1585

Re: What to do after immunotherapy works

Hi Plastikos, I had my last treatment August 2017 and have had no treatment since. I have been getting scans/ bloodwork every 3 months. So far still NED. Next scan is in March. I have read mixed treatment options so it seems to be no agreement between Dr.I agree with researching what lung cancer res...
by Wonderfullymade
Fri Jan 11, 2019 4:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV 31 Year Old Male currently Fighting
Replies: 5
Views: 1385

Re: Stage IV 31 Year Old Male currently Fighting

Hi jumpman, I am sorry you have to be here, but if you must be this is a good group to support you through it! I am one of those who doesn’t post much, but I do look in from time to time. In March it will be 4 years since I was diagnosed stage 4 and wasnt really given a great deal of hope for surviv...
by Wonderfullymade
Fri Jan 11, 2019 4:21 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 77
Views: 33783

Re: Switching back to Pembro

Hi Henry, My onc with option #1based on toxicity. I was starting to have colitis issues and she said we can always start it back up again if we need to...so far so good. I am not lynch so I don’t know if that would make a difference. I am getting scans every 3 months still. My thoughts are with you!...
by Wonderfullymade
Mon Jan 07, 2019 10:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 77
Views: 33783

Re: Switching back to Pembro

Keeping you in my thoughts for a clean scan! Let us know whats decided treatment wise!
Wonderfullymade
by Wonderfullymade
Thu Dec 20, 2018 9:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 36186

Re: Keytruda....Working for MSS....Mutation Burden is the Key

This is fascinating and fantastic news! A few more of us are able to get a treatment that works! Thank you for the links! I also got Keytruda off label because it was not approved at the time I needed it. My Dr appealed to my ins co on the grounds of it being a lifesaver for me. At the time there wa...
by Wonderfullymade
Wed Dec 12, 2018 4:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 77
Views: 33783

Re: Switching back to Pembro

December scan update...
Still NED, next scan March.
Happy Holidays everyone!
Wonderfullymade
by Wonderfullymade
Tue Nov 20, 2018 1:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sad news
Replies: 17
Views: 2908

Re: Sad news

I am sorry to hear of your loss also...will keep you in my thoughts
Wonderfully made
by Wonderfullymade
Tue Nov 20, 2018 1:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Sleeping with: bag, heart monitor and pump accached
Replies: 9
Views: 1103

Re: Sleeping with: bag, heart monitor and pump accached

I can not sleep on my back and turn from side to side through the night. Never underestimate yourself. For my whole life I believed that I was a side sleeper. However when I was neither able to sleep on my right side nor on my left side after a couple of sleepless nights I have learned how to sleep...

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