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by EverySunriseCounts
Fri Jun 10, 2016 2:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Today's ASCO-2016 Oral Presentation on MSS-CRC PDL1-MEK Immunotherapy Success
Replies: 10
Views: 4478

Re: Today's ASCO-2016 Oral Presentation on MSS-CRC PDL1-MEK Immunotherapy Success

HI @DK37 and all: So we're moving ahead with immunotherapy, and the doctors are recommending that we do the tests from Foundation Medicine. There was an article about them in GenomeWeb (paywalled) so I'm repeating it here. The important thing is that EVEN IF YOU ARE MSS, you may have a high "tu...
by EverySunriseCounts
Sun Jun 05, 2016 2:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Is it possible that VSL#3 probiotic caused husband's diarrhea?
Replies: 14
Views: 2640

Re: Is it possible that VSL#3 probiotic caused husband's diarrhea?

Ronswife, My understanding from reading the user reviews of many of the probiotics is that they very much can cause diarrhea (a big reason I'm holding off asking my husband to take them). It takes a while for the intestines to adapt, and there are a lot of horror stories out there of people who did ...
by EverySunriseCounts
Thu Apr 28, 2016 8:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Stage IV long term survivors here?
Replies: 38
Views: 8038

Re: Any Stage IV long term survivors here?

One of my clients--a lean, healthy, and outdoorsy guy--informed me last summer that he was diagnosed with Stage IV.

In 1992.

Since it's 2016 now, that makes it... 24 years?

He's been fine ever since, has some neuropathy in his feet.
by EverySunriseCounts
Thu Apr 28, 2016 7:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: TIL Immunotherapy at NCI
Replies: 612
Views: 190769

Re: TIL Immunotherapy at NCI

That is an awesome story, Sleen! Love that you now have the evil beast in a freezer in case you ever need treatments against it again. Please keep us posted on the findings. So happy you've reached the land of NED.....
by EverySunriseCounts
Mon Mar 28, 2016 3:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 4 years NED
Replies: 20
Views: 2616

Re: 4 years NED

Thanks CECI,

I'm sitting here with tears in my eyes and a big ol' goofy grin on my face. Very happy for you and your husband. HAPPY EASTER!
by EverySunriseCounts
Sun Jan 31, 2016 1:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 4 Survival stories
Replies: 31
Views: 7590

Re: Stage 4 Survival stories

Felicity, I have two stories for you. First, my husband and the love of my life was diagnosed in Sept 2014, stage IV, nonresectable liver mets. We did not ask "how long do I/does he have". Instead, we said, "Okay, so the plan is to do (treatment), possible liver resection, and arrive ...
by EverySunriseCounts
Thu Jan 28, 2016 10:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: BBI-608 Clinical Trial Update
Replies: 4
Views: 2289

Re: BBI-608 Clinical Trial Update

Thanks DK. And "while waiting for the immunotherapy rocket to take off"--thanks also for that turn of phrase!
We have a couple of newbies who need to hear it, I think...
by EverySunriseCounts
Thu Jan 28, 2016 10:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question about recurrence
Replies: 16
Views: 2994

Re: Question about recurrence

Oh Chimney! So glad the scan went well!!! Wooo! On the dizziness/unstableness, I can't speak to chemo side effects--my sweetie gets tired, breathless, and wants to sit down but still has better balance than me. That said.... I'm wondering right off the bat about dehydration/mineral deficiency. Is th...
by EverySunriseCounts
Thu Jan 28, 2016 4:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: New to Board
Replies: 23
Views: 4176

Re: New to Board

HI BeansMama, I hear you. Boy do I hear you! My sweetie got the Stage IV Dx September 2014. There's so much more I could say, but I'll focus on this. The day we got the diagnosis, the thought flashed through my head: "There's a guy somewhere who was the last guy diagnosed with AIDS before the a...
by EverySunriseCounts
Thu Jan 28, 2016 1:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Husband had LAR on Monday, ileostomy bag continues to leak please help
Replies: 9
Views: 1496

Re: Husband had LAR on Monday, ileostomy bag continues to leak please help

Lydia, PLEASE look into this product: http://www.amazon.com/gp/product/B00JWSFT3Y It's called Sure Seal (if the link doesn't work). You can buy it through Amazon. It's basically very strong, sticky, waterproof lightweight plastic that you put on OVER the ordinary seal. It's a PITA to put on, but onc...
by EverySunriseCounts
Thu Jan 28, 2016 1:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Shrinkage
Replies: 45
Views: 4853

Re: Shrinkage

Woohoo! I'm loving "shrinkage". So happy for you, keeping the positive energy coming!
by EverySunriseCounts
Mon Jan 18, 2016 2:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 3 no surgery?
Replies: 37
Views: 5143

Re: Stage 3 no surgery?

Hey ALW, thanks for that! Rolf Benirschke played for the Chargers with an ileostomy. :D Find us a boxer and I'll cheerfully stand corrected on that point as well. Good thing I phrased it with weasel-words :) I'm still trying to figure out how the guy (or gal? or guys/gals?) who climbed Everest manag...
by EverySunriseCounts
Mon Jan 18, 2016 9:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage 3 no surgery?
Replies: 37
Views: 5143

Re: Stage 3 no surgery?

Hi all, Since we've moved to the topic of what it's like to have an ostomy... Our nurse (who has one) told us at the beginning: "There's nothing you can't do with an ostomy that you could have done without one". People have apparently climbed Mt. Everest, gone scuba-diving, etc. Now that h...
by EverySunriseCounts
Mon Jan 18, 2016 8:40 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hope
Replies: 13
Views: 1888

Re: Hope

Nate, sending positive energy your away, but that is GREAT news!!! Little bastards indeed.
by EverySunriseCounts
Mon Jan 18, 2016 8:26 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Reversal Log: Experience,Problems, Q & A's
Replies: 436
Views: 83985

Re: Reversal Log: Experience,Problems, Q & A's

Thanks! That is most helpful. DH has a lovely, gorgeous, bow-to-stern horizontal scar from emergency surgery in 2014. If we get to a point where he gets an ostomy reversal, the horizontal one will complement it nicely! Seriously.. I don't know if this is the place to say this, but as the other half ...

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