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Jul 28, 2016 · @tbarnett11 · New to this cancer thing and scared. I am 46 years old [...]

New to this cancer thing and scared. I am 46 years old and 2 weeks ago I was told there was a mass in my colon. I have always been healthy, active and full of life but the past 3 years I have just seem to have one strange ailment [...]

Posted by kline, Thu, Jul 28, 2016 9:31am

I think being terrified of chemo is normal. I was! But I have found (as many others have) we all react differently to the various chemo they give us. As a nurse you know that different people respond differently to the surgeries, medication, etc, (that you helped administer to your

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Posted by kimber, Thu, Jul 28, 2016 9:52am

@bryanmeb Have you been in remission since 2013?! Wow. Did you have colon cancer too? Kimber

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Jul 11, 2016 · @johanz · After a colonoscopy on 29 June colon cancer which mestetasized to the [...]

After a colonoscopy on 29 June colon cancer which mestetasized to the liver has been diagnosed. Referred to a surgeon by my GP, who has scheculed a Sigmoid Colectomy for Thursday 14 July. Was I not suppised to be referred to an oncologist first or is this the right procedure [...]

Posted by carolcowan, Mon, Jul 11, 2016 1:13pm

johanz,
I'm Carol, one of the moderators here. I think it's great that the surgery is so soon, they'll see what's going on, get it out of there, and then you'll find out how to deal with the liver mets and keep it away.

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Posted by johanz, Mon, Jul 11, 2016 8:44pm

@carolcowan Thank you for your reply. I now agree with you. I phoned around yesterday and got satsfactory answers from specialists. Now that I know the correct procedures are followed I am ready.

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Jul 9, 2016 · @lisa_michele · Hi All I find everyones stories so inspiring and brave and now [...]

Hi All I find everyones stories so inspiring and brave and now I feel I need to share my sisters story in the hope of hearing advice and peoples experiences – I hope you continue to read on ☺ My amazing 43 year old sister was diagnosed with [...]

Posted by jstauf, Fri, Jul 8, 2016 1:17am

I agree - we are partners with "our cancer patients" and sometimes there is an opportunity for input; but ultimately, the journey is theirs. We are definitely along for the journey, and suffer along with them, but they are the ultimate decision makers about when enough is enough. We may

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Posted by carolcowan, Sat, Jul 9, 2016 9:54am

Jan,
Your attitude is exactly what it should be. It's not a given with caregivers, and while others are following and supporting you, some who read these comments and replies are seeing a great example of what a caregiver in your situation should do.
Carol

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Jul 6, 2016 · @lexilou · I just finished 12 treatments of Folfox for stage 3C colon cancer. [...]

I just finished 12 treatments of Folfox for stage 3C colon cancer. I have been offered a spot in a research study for Regrorafenib. It is a double blind study so I may receive the drug or a placebo. I am looking for any information to include side affects. I [...]

Posted by megm, Wed, Jul 6, 2016 12:20pm

HI @lexilou, good for you for getting as much information as possible so that you can make an informed decision. Have you asked your doctors about the risks and benefits of participating in the trial compared with the best available therapy? Stivarga (regorafinib) has been approved in metastatic colorectal cancer

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Posted by lexilou, Wed, Jul 6, 2016 8:39pm

Thanks megm. I have spoken with the Research Coordinator and we have reviewed the side affects. The potential side affects we discussed are the same as listed in the information you referred me to. I did find out that in this study I will receive the actual medication (not a

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Jun 13, 2016 · @kimber · My husband had urinary stent put in as the ureter wasn't staying [...]

My husband had urinary stent put in as the ureter wasn't staying open. His cea is now 6. I believe normal is under 4. The month before he was at 3 so it's increased significantly. He has to get ct scan. If they don't see anything on ct would you [...]

Posted by carolcowan, Mon, Jun 13, 2016 6:23am

Kimber,
If it sounds like I'm trivializing your husband's test result, I'm not. In your shoes, it's yet another setback and it would worry me, too. You understand what's happening with your husband better than I do. You deal with his problems proactively. I preach about that here and you've

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Posted by kimber, Mon, Jun 13, 2016 9:40pm

@carolcowan that was one of the nicest things anyone has ever said to me. Thank you, kimber

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Jul 21, 2016 · @browning6 · Looking for survival stories. Husband Stage 4 with Metastatic to lung, liver [...]

Looking for survival stories. Husband Stage 4 with Metastatic to lung, liver and nodes. [...]

Posted by carolcowan, Tue, Jul 19, 2016 1:04pm

Kathy,
The fatigue isn't from aging most likely, it's more of a metabolic thing. That said, I've heard it can take 6 months or more for some people to get it to a level where they can function the way they used to. No doubt, chemo disrupts a lot of

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Posted by kline, Thu, Jul 21, 2016 10:05am

Carol,

My first trip to Alaska was with an older friend (She's 5 years older than me) when we both retired. She had been wanting to go back to Alaska for a long time, so as we were planning our retirement I told her if she wanted to go, I would

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Jun 7, 2016 · @Elliem · Dear Carol, I am headed toward my last [...]

Dear Carol, I am headed toward my last hope(Lonsurf). I have a good quality of life. If this doesn't work, does a person just go home and wait til the end? I am very active and positive. I have colorectal cancer with lung mets, 2 1/2 years out from diagnosis. [...]

Posted by katie5963, Mon, Jun 6, 2016 9:02am

Saw this article today and thought I would share...might be worth looking into..

http://www.houstonchronicle.com/news/medical/article/Immunotherapy-still-the-hot-topic-at-cancer-7964829.php

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Posted by carolcowan, Tue, Jun 7, 2016 12:05am

Dear Ellie,
I'm sorry it took a while for me to respond. I've had some things in my family that were distracting. I went back to your first post and read forward because your question is serious. Who has said Lonsurf is your last option? I know you live in

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Jun 2, 2016 · @snowman · My wife had colon cancer in 2007 that was surgically removed. In [...]

My wife had colon cancer in 2007 that was surgically removed. In June 2015 she discovered that it had returned but in her lungs. She is being treated at Cape Cod Healthcare by an oncologist we are very pleased with. My question is is there any immunotherapy now available and [...]

Posted by mkms, Fri, Jun 3, 2016 5:38am

Dana Farber is phenomenal. They will set you up w/ an appointment w/in a few days. My husband travels from Miami every 2 weeks for immunotherapy. He is in a clinical trial and his mets from RCC shrunk 6 weeks after beginning his treatment. Appointments (labs, EKG, NP & MD,

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May 26, 2016 · @wazhyfee · My husband was diagnosed with stage 4 colorectal cancer back in February. [...]

My husband was diagnosed with stage 4 colorectal cancer back in February. He has completed 5 of 12 rounds of aggressive chemotherapy. He has Hand and Foot syndrome from the 5-FU and has extreme back pains from the Neulasta shots. We have tried Claritin starting 2 days before the shot [...]

Posted by faith, Thu, May 26, 2016 9:49am

Is he being cared for at a cancer center? Have him ask the oncologist for a referral to the cancer pain management doctor. Oncologists treat cancer and though they may have a few standard meds they order for pain control, if your hubby isn't responding to those drugs, a cancer

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Posted by wazhyfee, Thu, May 26, 2016 10:13am

His doctor prescribed Neurontin. This has helped tremendously. Also increased his Fentanyl to 75mcg in the hopes that he can scale back using so much of the oxycodone.

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May 5, 2016 · @luisa · "What Is Lynch Syndrome?" New blog discussion from Dana-Farber The article begins, [...]

"What Is Lynch Syndrome?" New blog discussion from Dana-Farber The article begins, "Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer (HNPCC), is the most common hereditary form of colorectal cancer. In the United States, about 140,000 new cases of colorectal cancer are diagnosed each year and approximately [...]

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Jun 1, 2016 · @Elliem · Stage IV CRC with Lung Mets

I have stage 4 colorectal cancer with lung mets. I'm 2 1/2 years out from diagnosis. When I first asked about surgery my onc consulted a general surgeon(we live in a rural community) my onc comes to our local hospital to give treatment. They said my cancer was down too

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Posted by wazhyfee, Mon, May 9, 2016 12:07am

My husband has stage 4 colon cancer with mets to his liver. He started chemo in March. So far he's completed 5 of 12 rounds. Every 2 weeks he spends half the day getting boosters and chemo then goes home with 5-fu in a fanny pack for 2 days.
Many

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Posted by rclkus, Wed, Jun 1, 2016 9:16pm

Why he consulted a general surgeon. It was thoracic surgeon who should be consulted? May be you are living in small town, but in any case, they should not put you in “maintenance treatment”.
My elder brother was 70 in October 2010 when he was diagnosed to have stage IV

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Apr 14, 2016 · @tetris · Stage IV colon cancer with mets to uterus. Knowledge on this would [...]

Stage IV colon cancer with mets to uterus. Knowledge on this would be appreciated [...]

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Apr 14, 2016 · @luisa · Join Us at "LYNKED IN" Dana-Farber's Educational Conference for Patients with Lynch [...]

Join Us at "LYNKED IN" Dana-Farber's Educational Conference for Patients with Lynch Syndrome June 11, 2016, Dana-Farber's Boston Campus "LYNKED IN" is a one-day, educational conference for individuals with Lynch syndrome, their families, and caregivers, hosted by Dana-Farber’s Center for Cancer Genetics and Prevention. Patients treated at Dana-Farber and [...]

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Apr 20, 2016 · @kimber · Temperature regulation

Temperature regulation Hello everyone: My husband is having trouble regulating his temperature. It seems mostly he is cold and even in a hot shower he still feels cold. To recap, he has stage 4 colon cancer with mets to peritoneum ureter and lymph nodes. It is very odd, so I figured maybe [...]

Posted by kimber, Wed, Apr 20, 2016 10:52am

Thank you megm. Right now he is not on chemo. Could that b a lasting effect maybe?

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Posted by carolcowan, Wed, Apr 20, 2016 11:47am

Kimber, I meant to respond to this but got sidetracked. My brother-in-law (liver cancer) was cold all the time, too. It was especially bothersome when he finished eating dinner. He took a very warm bath every evening right after eating. He wore heavyweight sweatpants, a shirt, and a hoodie or

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Apr 5, 2016 · @tconz777 · Vectibix- stage IV Colon Cancer

Vectibix- stage IV Colon Cancer Hi everyone my husband has stage IV colon cancer that spread to his liver. He recently had liver surgery and they were able to remove all of the liver tumors. Now they suggested starting him in Vectibix and Folfox. Has anyone been on this drug? [...]

Posted by megm, Tue, Apr 5, 2016 9:24am

Hi @tconz777, I am one of the moderators here and have messaged the other members of the colon cancer group to see if they can share their experience. Thanks for your post!

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Posted by tconz777, Tue, Apr 5, 2016 7:11pm

Thank you @megm

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