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by hopefulandstrong
Mon Nov 25, 2019 2:52 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hope for BRAFers
Replies: 5
Views: 431

Re: Hope for BRAFers

Yes v600 -- don't know about the feeding tube
by hopefulandstrong
Sun Nov 24, 2019 1:11 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hope for BRAFers
Replies: 5
Views: 431

Re: Hope for BRAFers

I did not find the original triplet therapy difficult -- certainly not compared to oxalyplatin. The Erbitux does produce a rash, but that is cosmetic. And I did find myself nauseated a bit more often, frequently without warning.
by hopefulandstrong
Sat Nov 23, 2019 9:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hope for BRAFers
Replies: 5
Views: 431

Hope for BRAFers

I'm happy to report that after multiple attempts with multiple standards treatments, I have a found a trial that is promising for folks with the BRAF mutation. It does seem that some of us respond to agents such as folfox of folfiri, but I don't seem to one of them. The triplet therapy associated wi...
by hopefulandstrong
Tue Nov 19, 2019 12:43 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver Progression Only
Replies: 5
Views: 415

Re: Liver Progression Only

That sounds right. My onc says that that liver is vascular, has sugar in it -- cancer just loves it. I feel lucky that it's confined, and still hopeful that I can get the HAI pump installed in January -- while still doing system for by BRAF and PIC 3 mutations. Seeing a new onc who specializes in th...
by hopefulandstrong
Tue Nov 19, 2019 11:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Liver Progression Only
Replies: 5
Views: 415

Liver Progression Only

As I scan the board, I notice that there are number of us who are seeing progression confined to the liver. I am BRAF and PPC3 positive, which means folfox and folfiri don't really work for me. Except maybe -- outside the liver. After three rounds of folfoxfiri, scans showed growth in the liver, but...
by hopefulandstrong
Mon Nov 11, 2019 9:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Pain below right ribcage
Replies: 8
Views: 706

Re: Pain below right ribcage

I have that. It comes and goes, on both sides. My disease in confined to my liver, so when it's on the right side, I sometimes worry. But my onc prescribed an antacid, which helps. I notice it flares when I eat a lot.
by hopefulandstrong
Mon Nov 11, 2019 9:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: DNA editing tool Crispr - can this be the one?
Replies: 3
Views: 388

Re: DNA editing tool Crisp - can this be the one?

This seems similar to the NIH trial, yes? Similar approach to re-engineering cells to kill cancer cells?
by hopefulandstrong
Thu Oct 31, 2019 3:27 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What, besides, tumor burden causes elevated CEA?
Replies: 7
Views: 656

Re: What, besides, tumor burden causes elevated CEA?

Super helpful. And yes, I am scheduled for pump placement in January. Assuming there is no spread outside the liver. There are a couple of lymph nodes (which I think is also accounting for CEA rise to 68) but Dr. Kingham says those come out along with the gall bladder. My procedure was postponed due...
by hopefulandstrong
Thu Oct 31, 2019 1:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What, besides, tumor burden causes elevated CEA?
Replies: 7
Views: 656

What, besides, tumor burden causes elevated CEA?

I've searched the forum because I recall a couple of comments discussing things besides smoking that cause an elevated result -- things like dehydration, not enough/too much of one or another vitamin, general inflammation.... Can folks remind me of the list?
by hopefulandstrong
Wed Oct 30, 2019 5:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 301
Views: 49102

Re: My CRC with liver mets journey

Not the same situation - yours is much better -- but a similar feeling of disappointment, when my triplet therapy stopped working in August, and I was advised to go back on Folfoxfiri. It felt like a major defeat -- not to mention the regimen is way harder, and I loose several days a month to recove...
by hopefulandstrong
Sun Oct 27, 2019 2:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Positive fecal occult test
Replies: 15
Views: 907

Re: Positive fecal occult test

Get the scope. Positive Fecal Occult test is how we found mine -- which happens to be fast growing.
by hopefulandstrong
Sun Oct 27, 2019 8:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 301
Views: 49102

Re: My CRC with liver mets journey

Sending love and thoughts of swift recovery
by hopefulandstrong
Thu Oct 24, 2019 3:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anemia -- how have you dealt with it?
Replies: 5
Views: 532

Anemia -- how have you dealt with it?

several weeks ago I was diagnosed with a blood clot in my leg and small pulmonary embolism. I spent a week at MSK feeling that absolute garbage. I've been on blood thinners for a month, and things are stabilizing. However, 'm also anemic, bad enough to have a transfusion in early October but not bad...
by hopefulandstrong
Thu Oct 24, 2019 6:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 301
Views: 49102

Re: My CRC with liver mets journey

Gina - Your journey is such an inspiration to so many of us. Not just your courage and persistence and willingness to share vulnerability, but the love that clearly surrounds you, on this board and beyond. I truly believe that love is key to this (becoming better at love is also one of the "gif...
by hopefulandstrong
Thu Oct 17, 2019 10:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 301
Views: 49102

Re: My CRC with liver mets journey

Hooray!

hopefully, this is a year you put behind you, and have a great story to tell. Thanks for keeping us updated.

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