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by mhf1986
Fri Oct 05, 2018 7:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 39760

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

Thank you so much! A good place to start. DH surprised everyone with FOLFOX working for 18 months. Now he's surprising everyone with the Vectibex+Irinotican only working 4 months. It was such a big surprise because the CEA was mostly stable and the liver function tests were looking good. No one expe...
by mhf1986
Fri Oct 05, 2018 11:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda....Working for MSS....Mutation Burden is the Key
Replies: 152
Views: 39760

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

:?: :?: Can anyone tell me where a study program in the US is or give me reference to a scholarly article about this? DH liver tumors, lymph nodes, and lung things grew again after only 5 months on Vectibex/Irinotican. The July scan showed shrinkage of a liver tumor to 3cm and now it's bounced up to...
by mhf1986
Mon Sep 24, 2018 6:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA increase on FOLFIRI
Replies: 5
Views: 1381

Re: CEA increase on FOLFIRI

Yes, DH started at 114, then dropped to 40 after surgery only to bounce up to 80 after his first 2 treatments. Dr. said it was the tumor rapidly throwing off the protein, trying to survive. CEA steadily declined after that and tumors did shrink. We are waiting on CEA results now, haven't seen any si...
by mhf1986
Sun Sep 23, 2018 12:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Vectibix - Distant LN spread
Replies: 6
Views: 1491

Re: Vectibix - Distant LN spread

DH started on Vectibix in May + then added 66% Irinitican dose in June (no 5FU) every 2 weeks. The Vectibex rash showed up at the 2nd treatment but is very manageable: good face moisturizer morning and night, sunblock when he's outside, and Aveeno Oatmeal Lotion for chest and back rash. Prescription...
by mhf1986
Tue Sep 11, 2018 8:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Good news!
Replies: 13
Views: 2826

Re: Good news!

DH has been doing Vectibex since May. First session was nothing and then boom...his face looked like really bad acne, complete with white/yellow zits. Red dots spread to chest and back. It has calmed down now some since he's learned how to take care of it. He has learned several lessons: don't pick ...
by mhf1986
Sat Sep 08, 2018 6:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Irinotecan Only
Replies: 1
Views: 797

Re: Irinotecan Only

DH is on Vectibix and Irinotecan only, no 5FU. Doctor said the 5FU had probably done all it could.
by mhf1986
Wed Sep 05, 2018 7:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: The things people say to cancer patients
Replies: 44
Views: 11044

Re: The things people say to cancer patients

How do caregivers respond when asked "How are you?" My honest thought is "How the bleep do you think I am?" How do you respond to "How many more chemo treatments?" or "How much more chemo is required?" when the answer is forever? I once responded "Til it ...
by mhf1986
Fri Aug 31, 2018 11:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Really worried. Stage 4 with increasing CEA despite of chemo
Replies: 3
Views: 1418

Re: Really worried. Stage 4 with increasing CEA despite of chemo

Vectabix (aka p-mab) has been working well for DH since May of this year. Doctor added partial dose of Irinotican in June and it's helping too but producing a "gruel-like" diarrhea in his ostomy bag we are trying to manage with Imodium. I didn't see the Vectabix in your signature so though...
by mhf1986
Wed Aug 22, 2018 8:18 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anyone with Kras G12V or G12D, NIH trial needs you
Replies: 24
Views: 6920

Re: Anyone with Kras G12V or G12D, NIH trial needs you

How does one get tested for the particular mutations? I've read on this board about the Foundation One testing for the Keytruda trials...is that the same thing? DH did have some testing done but I don't know if it went this far in detail. Our original oncologist didn't seem hopeful about anything so...
by mhf1986
Fri Aug 10, 2018 7:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3547
Views: 716675

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Hi Kim, If the Doctors agree, and if your DH feels up to it, do what you/he want. We don't have hounds or kids: DH likes to work, I work anyway, and we like to travel. So when he's feeling good, we do weekend trips and we've done longer trips too. The two week trip was a bit much but the 1 week ones...
by mhf1986
Tue Jul 31, 2018 6:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Wives of husbands with Stage IV Colon Freaking Cancer
Replies: 3547
Views: 716675

Re: Wives of husbands with Stage IV Colon Freaking Cancer

Sending you hugs Carlotta! I've often told my DH that WE have to be the advocates and ask the questions. Often, doctors don't recommend treatments because they don't know or they don't have it at their hospital. We were told Pallative too because of numerous liver mets. Here we are 22 months later. ...
by mhf1986
Tue Jul 24, 2018 7:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Please pass your positivity/wisdom today
Replies: 19
Views: 6792

Re: Please pass your positivity/wisdom today

Vectibix (aka p-mab per the oncologist and nurse) ROCKS! Really doing a number on DH's liver mets. DH has the face rash (his nose looks like he's been in a fight with all the scabs) and chest/back rash. Nurse called it stable looking but we didn't get a grade. We were told heavy duty lotion (he's us...
by mhf1986
Tue Jul 24, 2018 7:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I have less than a year to live
Replies: 9
Views: 2647

Re: I have less than a year to live

Totally get not wanting to be ill all the time. FOLFOX was a chore for DH, bone tired, ill feeling, diarrhea, etc. He started Vectabix aka p-mab (an EGFR therapy) in May and the only side effect is the face/chest rash. He looks like he's 16 again with zits but I don't care what he looks like. The nu...
by mhf1986
Sun Jul 22, 2018 1:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PERMANENT COLOSTOMY/VS RESTRUCTURE
Replies: 9
Views: 1217

Re: PERMANENT COLOSTOMY/VS RESTRUCTURE

DH has had his colostomy for almost 2 years now. The restructure failed a week after the surgery, resulting in sepsis. Surgeon said the intestines were just too weak to hold but he wanted to give DH a chance at it. I wish we had chosen the ostomy going in because the sepsis delayed treatment by at l...
by mhf1986
Sat Jul 21, 2018 7:52 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colon Cancer with mets to liver
Replies: 10
Views: 1902

Re: Colon Cancer with mets to liver

People surprise doctors all the time. That's why it's called 'practicing medicine.' :lol: According to the first oncology group my DH saw, he wasn't supposed to be here right now! Highly second the "Get to a major cancer center." They have all the bells and whistles. There are other treatm...

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