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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: 750

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: 61
Views: 22988

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: 61
Views: 22988

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: 48
Views: 12878

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: 61
Views: 22988

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: 1860

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: 595

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...
by Wonderfullymade
Tue Nov 20, 2018 1:22 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSI-H with liver met, in search of help
Replies: 19
Views: 2087

Re: MSI-H with liver met, in search of help

I am MSI-h, (MLH1 and PMS2) not Lynch. I did full 12 rounds of folfox and had a recurrence within 5 months. Multiple Mets to lymph nodes all over abdomen, chest and neck. We watched a lymph node in my neck grow 3 cm while doing 2 rounds of folfiri. Then I started Keytruda and within 3 months all my...
by Wonderfullymade
Mon Oct 01, 2018 11:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 61
Views: 22988

Re: Switching back to Pembro

I should be returning to more internet time in the fall. I have been using my time to RV, so I don’t always have access. I took Pembro for 20 months. I was battling colitis and then started having some breathing problems (turns out it was asthma-never had it before...side effect..dunno), so Dr did a...
by Wonderfullymade
Fri Sep 28, 2018 12:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 61
Views: 22988

Re: Switching back to Pembro

Great news Plastikos, Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks. It started with once every 2 weeks. It is now at once a month. Great to hear that Henry. Looks like we are kind of in the same boat right now. If i...
by Wonderfullymade
Sat Apr 21, 2018 6:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC
Replies: 21
Views: 5591

Re: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

No treatments since sept scan. I scan again in june.
Feeling great! I am preparing for a 10+ mile hike today, 13+ next weekend!
by Wonderfullymade
Fri Apr 20, 2018 8:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC
Replies: 21
Views: 5591

Re: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

I seem to have become quite forgetful as compared to earlier especially with regards to names and upcoming appointments. Could it be related to Nivolumab ? Has anybody else on Opdivo /Keytruda experienced similar memory loss related symptoms. Occasional muscular pains are still there. But overall, ...
by Wonderfullymade
Tue Mar 27, 2018 7:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Can someone who is stage 4 really end stage still benifit from Keytruda?
Replies: 6
Views: 1101

Re: Can someone who is stage 4 really end stage still benifit from Keytruda?

I wasnt on hospice but was pretty close! Failed at folfox and folfiri...crap kept spreading and was taking over my lymph system. A lot of my Drs weren’t offering much hope, but thankfully my fellow oncologist was all excited about this new treatment and got me on it off label. I wouldnt be here if i...
by Wonderfullymade
Tue Jul 25, 2017 1:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BrownBagger ....... I don't know what to say
Replies: 125
Views: 32226

Re: BrownBagger ....... I don't know what to say

Oh no! I am shocked and so sad to hear this news! He will be greatly missed by me as well!
My condolences, thoughts and prayers to CRguy and to Erics family and those friends he has made along the way!
by Wonderfullymade
Fri May 12, 2017 8:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Switching back to Pembro
Replies: 61
Views: 22988

Re: Switching back to Pembro

Another post I absolutely needed to read today! I have been feeling the sameway Plastikos! And guilty about it! Stable is good,but...have seen some fantastic results in some people and have been wondering how long does it take myself! And thank you again Maia! You are truly a ray of light/hope for m...

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