Living with colorectal cancer - Meet others & come say hi

Welcome to the Colorectal Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with colorectal cancer or caring for someone with colorectal cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

@brenz

Hi Missmary. My hubby had the same problem during chemo. He seemed to keep sweets down better than other things. He couldn’t eat fish any more during the chemo. He is back to eating it now. Our oncologist told us to eat whatever he liked with lots of water during the chemo week. My husbands next phase after chemo (because he had Mets to liver too) was to have his liver resected-both aides within 6 weeks of each other and the diseased piece of the colon taken out during that time. Hope this helps.

Jump to this post

Hi Brenz, I had the surgery first. They removed the right side of the liver and most of the transverse and all of the ascending colon. I am close to finishing 12 rounds of chemo. The types of food I am able to hold down or taste is of all things instant mashed potatoes and stouffers Mac n cheese. LOL. I’m not able to eat meat or many sweets. Although, I was a heavy sweet eater prior to surgery. All of this happened very fast. I suffered from what was thought to be gallbladder pain for many years and no one was able to find a problem until it metastasized to the liver. Hope all goes well with your husbands surgery. His appetite may change again after the surgery. God bless and all my prayers for his recovery.

Liked by Jamie Olson

REPLY
@colleenyoung

Welcome new members, @sherriehanna @mri8191 @ronaldrea @brenz and @ajknu, to the Colorectal Cancer group. I look forward to learning more about you and introducing you to other members. I invite you to start by posting a message to tell us a bit about you and what brings you to Mayo Clinic Connect.

Simply click VIEW & REPLY in the email notification and REPLY to this message.

Jump to this post

@colleenyoung Wow our group is growing. They all came to the right place for support. I wish everyone the best.

REPLY
@colleenyoung

Welcome new members, @sherriehanna @mri8191 @ronaldrea @brenz and @ajknu, to the Colorectal Cancer group. I look forward to learning more about you and introducing you to other members. I invite you to start by posting a message to tell us a bit about you and what brings you to Mayo Clinic Connect.

Simply click VIEW & REPLY in the email notification and REPLY to this message.

Jump to this post

Indeed it is, @travelgirl. I'm glad you're here to offer understanding, guidance, tips and support.

REPLY
@rayleemorris

Hi. I'm Ray from Fort Worth, Tx. Diagnosed in Dec 2010 with colorectal cancer. Underwent six weeks of radiation. Doctors said they killed it off. Three month CT and all's well. Six month CT and the camcer is back. Time for surgery and a osotomy! Sep 2011, sixteen hour surgery remove rectum, six inches of colon, and prostrate. Osotomy on left side of bellybutton. Sucks. 13 lymph nodes removed. One showed signs of cancer. MRI showed cancer spread to lungs. Nov 2011 started chemo for metastized colorectal cancer in my lungs. Have been on chemo every other week ever since, less a few "chemo breaks" now and then to let my body rest. Multiple nodules in both lungs. Cancer is rare. Less than 1% get it. Aggressive, rare, and no cure. CT scans every three months. Cancer grows 2 – 3 mm each scan. Luckily it's not spreading, just continues to grow. I'm on the last chemo known to help control it. I'm running out of options… and time. Really infuriating thinking money controls cancer cures. Hopefully I'm wrong, but when your days are numbered you start blaming, even God. I'm a Christian and know it's God's plan for all of us to be going through our ordeals. God loves us and never gives us more than we can handle. WE ARE ALL STRONG WARRIORS IN OUR FIGHT AGAINST CANCER. Maybe there's a purpose we have this disease. Hopefully someday it will reveal itself. I'm just glad it happened to me and not someone I love. I can handle it, just wish doctors could find a cure, or at least a way to stop it's growth. Blessings to you all.

Jump to this post

Hi Colleen. I am currently on Vectibix while at the hospital and then go home with an infusion pump that infuses 5-FU over the next 46 hours. Then I get to disconnect. Since my treatments began in 2011 I've been on all the chemo drugs known to treat cMRC yet the nodules continue to grow. Thank God their not spreading. Once the cancer has become immune to one drug they switch to another. The Vectibix is my last hope. After that all I have left is clinical trials. I've been very lucky over the years with really no side effects at all. No nausea, no diarrhea, my hair fell out naturally so nothing there. Back in the beginning I got neuropathy in my hands and feet from I think Oxiplatin? Doctor changed drugs and after a few years it's more or less gone away. Living with cancer has certainly been a challenge. It's the having to go for chemo every other week that sometimes gets to me. No long vacations are ever in my plans. I am so blessed God put my wife, and caregiver, in my life. Without her and her support and positive attitude I'm sure I wouldn't be writing to you today. She has been through it all with me. Never even missed not one of my appointments. A true Earth Angel sent by God to look after me.

REPLY

I am from Neenah, WI. I had 14 inches of colon removed 4-1-86. I am doing very well. I have colonoscopies every 5 years with no recurrence. I did not have chemo. I have had over 50 skin cancers including 2 melanomas and all of it has gone well with no chemo. Mayo Clinic keeps special records of my cancers because of my history. I hope everyone could do as well as I have done.

REPLY
@memorae12

I am from Neenah, WI. I had 14 inches of colon removed 4-1-86. I am doing very well. I have colonoscopies every 5 years with no recurrence. I did not have chemo. I have had over 50 skin cancers including 2 melanomas and all of it has gone well with no chemo. Mayo Clinic keeps special records of my cancers because of my history. I hope everyone could do as well as I have done.

Jump to this post

Hi Memorae12, and welcome to the Colorectal Cancer group on Mayo Clinic Connect. You'll notice that I moved your message to the introduction discussion on Connect called "Living with colorectal cancer – Meet others & come say hi". If you click VIEW & REPLY in the email notification you can read through the messages and meet the other members of the group, like @travelgirl @brenz @missmary @soul @starrlight @sallyg @bush @minabird @rayleemorris and others.

Memorae, I assume since you did not have chemo, that the colorectal cancer was caught early in your case. Is that right? How was it first detected back in '86?

REPLY

Welcome to the group Memorae 12. I am the caregiver of my mother who is 80years old and had colorectal cancer 2 years ago. She had to remove her colon without any Chemo. She is now recovering well. The good news is no cancer cells on her scan report. She has to take care of what she eats everyday to avoid the constipation. My Mom is in a good spiritual and she realized that it was the best decision she went through that Laparascopic operations. Since she did not want the operation. But she did it and it went well. With the guidance of Coleenyoung we were able to join the Mayo group discussion. It has been a wonderful experience. We got to learn so many things and exchange the knowledge from Mayo group discussions. We are so grateful. I hope you can join and share the experience. It has been a rewarding experience. Our best to everyone who has been in this journey. Soul

REPLY
@soul

Welcome to the group Memorae 12. I am the caregiver of my mother who is 80years old and had colorectal cancer 2 years ago. She had to remove her colon without any Chemo. She is now recovering well. The good news is no cancer cells on her scan report. She has to take care of what she eats everyday to avoid the constipation. My Mom is in a good spiritual and she realized that it was the best decision she went through that Laparascopic operations. Since she did not want the operation. But she did it and it went well. With the guidance of Coleenyoung we were able to join the Mayo group discussion. It has been a wonderful experience. We got to learn so many things and exchange the knowledge from Mayo group discussions. We are so grateful. I hope you can join and share the experience. It has been a rewarding experience. Our best to everyone who has been in this journey. Soul

Jump to this post

Thank you so much for that input story.  I found it is very helpful to discuss my cancer experience with everyone.  It helps me and helps others who do not know what to expect.

REPLY

Hi everyone! I was diagnosed stage 4 in July of 2016. Since my diagnosis, I’ve been seen at MD Anderson, had an orange sized primary tumor in my colon removed and 16 lymph nodes, had a port placed, had my spleen and gall bladder removed, had a hepatic artery pump placed at UPMC in Pittsburgh (to help with a football sized tumor in my liver), I had my port removed, the hepatic pump removed and so far dominated 27 rounds of chemo (avastin, oxyoplatin, and 5FU…different combinations at different times), and currently battling two nodules in my right lung.

I am a mom to a 15 year old and a ten year old and I am married to the love of my life. I was given a terrible life expectancy at my initial oncology appointment, but I told my doctor I would be her patient a long, LONG time whether she liked it or not! Ha! I asked her at the same appointment what the difference maker would be in tackling this disease: nutrition? hydration? Exercise? Rest? Do you know what she said? ATTITUDE!

I am praying each of you are winning the fight against this monster! I have never joined a chat forum so I’m anxious to see how we can all help and encourage each other!! Here’s to kicking this in the tail!!

REPLY
@jinatolle

Hi everyone! I was diagnosed stage 4 in July of 2016. Since my diagnosis, I’ve been seen at MD Anderson, had an orange sized primary tumor in my colon removed and 16 lymph nodes, had a port placed, had my spleen and gall bladder removed, had a hepatic artery pump placed at UPMC in Pittsburgh (to help with a football sized tumor in my liver), I had my port removed, the hepatic pump removed and so far dominated 27 rounds of chemo (avastin, oxyoplatin, and 5FU…different combinations at different times), and currently battling two nodules in my right lung.

I am a mom to a 15 year old and a ten year old and I am married to the love of my life. I was given a terrible life expectancy at my initial oncology appointment, but I told my doctor I would be her patient a long, LONG time whether she liked it or not! Ha! I asked her at the same appointment what the difference maker would be in tackling this disease: nutrition? hydration? Exercise? Rest? Do you know what she said? ATTITUDE!

I am praying each of you are winning the fight against this monster! I have never joined a chat forum so I’m anxious to see how we can all help and encourage each other!! Here’s to kicking this in the tail!!

Jump to this post

@jinatolle Welcome and thank you for posting a very positive and uplifting story. You also came to the best site. I was diagnosed with cecum.cancer and follicular lymphoma at the same time almost 2 1/2 yrs ago.
A great support team and attitude is what it takes to keep going agreed.

We are all.here for each other. So anytime you would like to chat please feel free to share.

Liked by michelle74

REPLY
@memorae12

I am from Neenah, WI. I had 14 inches of colon removed 4-1-86. I am doing very well. I have colonoscopies every 5 years with no recurrence. I did not have chemo. I have had over 50 skin cancers including 2 melanomas and all of it has gone well with no chemo. Mayo Clinic keeps special records of my cancers because of my history. I hope everyone could do as well as I have done.

Jump to this post

@memorae12 thank you for sharing your success story. It gives hope to many of us who have gone through a similar situation.
I had a foot of my colon removed at Mayo Clinic a little over 2 yrs ago. I did not have any other treatments. Plus i am being watched for follicular lymphoma.
I think having a great team.of doctors is a big life saver. God bless

Liked by sockwelljames

REPLY
@jinatolle

Hi everyone! I was diagnosed stage 4 in July of 2016. Since my diagnosis, I’ve been seen at MD Anderson, had an orange sized primary tumor in my colon removed and 16 lymph nodes, had a port placed, had my spleen and gall bladder removed, had a hepatic artery pump placed at UPMC in Pittsburgh (to help with a football sized tumor in my liver), I had my port removed, the hepatic pump removed and so far dominated 27 rounds of chemo (avastin, oxyoplatin, and 5FU…different combinations at different times), and currently battling two nodules in my right lung.

I am a mom to a 15 year old and a ten year old and I am married to the love of my life. I was given a terrible life expectancy at my initial oncology appointment, but I told my doctor I would be her patient a long, LONG time whether she liked it or not! Ha! I asked her at the same appointment what the difference maker would be in tackling this disease: nutrition? hydration? Exercise? Rest? Do you know what she said? ATTITUDE!

I am praying each of you are winning the fight against this monster! I have never joined a chat forum so I’m anxious to see how we can all help and encourage each other!! Here’s to kicking this in the tail!!

Jump to this post

My husband was diagnosed stage 4 over 6.5 years ago with cancer of colon, liver and eventually to lungs, he had piece of colon removed 3/4 of his liver removed that had grown back and then for his lungs he had cyber knife(a very pinpointed radiation ) to more than 8 tumors in the lungs. He had chemo for 6 months then another round via Xelida (pill form of chemo ) for a few months. He has a great attitude and we have traveled many places internationally during this period enjoying life. His next step is genomic testing to see if he qualifies for keytruda which is an immunotherapy that has been apprived for colon cancer. Hope this helps someone and continue with that great attitude.

REPLY
@rayleemorris

Hi. I'm Ray from Fort Worth, Tx. Diagnosed in Dec 2010 with colorectal cancer. Underwent six weeks of radiation. Doctors said they killed it off. Three month CT and all's well. Six month CT and the camcer is back. Time for surgery and a osotomy! Sep 2011, sixteen hour surgery remove rectum, six inches of colon, and prostrate. Osotomy on left side of bellybutton. Sucks. 13 lymph nodes removed. One showed signs of cancer. MRI showed cancer spread to lungs. Nov 2011 started chemo for metastized colorectal cancer in my lungs. Have been on chemo every other week ever since, less a few "chemo breaks" now and then to let my body rest. Multiple nodules in both lungs. Cancer is rare. Less than 1% get it. Aggressive, rare, and no cure. CT scans every three months. Cancer grows 2 – 3 mm each scan. Luckily it's not spreading, just continues to grow. I'm on the last chemo known to help control it. I'm running out of options… and time. Really infuriating thinking money controls cancer cures. Hopefully I'm wrong, but when your days are numbered you start blaming, even God. I'm a Christian and know it's God's plan for all of us to be going through our ordeals. God loves us and never gives us more than we can handle. WE ARE ALL STRONG WARRIORS IN OUR FIGHT AGAINST CANCER. Maybe there's a purpose we have this disease. Hopefully someday it will reveal itself. I'm just glad it happened to me and not someone I love. I can handle it, just wish doctors could find a cure, or at least a way to stop it's growth. Blessings to you all.

Jump to this post

Hey @rayleemorris
I know what you mean by an Earth Angel. Being a caregiver is no small task. When my Dad was in treatment our routine was, my mom takes care of my Dad and I take care of Mom, the caregiver. I'm glad to hear that neuropathy was reversed for you after stopping oxaliplatin. You wouldn't think that numbness could be so debilitating, but it is. In fact, we have a whole group dedicated to neuropathy of all causes on Connect.

Do you ever take chemo vacations, in other words, breaks from treatment?

REPLY

Hi I had stage 3 colorectal cancer in March of 2016, with 29 days of radiation and chemo. My resection of 1 foot colon removed July 2016. I had a bowel blocakage August 2016 and had emergency surgery to remove scar tissue and blockage and then a reversal of my illesostomy in September of 2016. My question is after all of this and almost two years out now I still have 1 day a week where I feel colon spasms along with clustering and after one to two days of this I am just exhausted. It resembles Krohnes disease and I wanted to know if anyone else had similar issues and what they do when issues like this happen?

REPLY
@jrsmarkey

Hi I had stage 3 colorectal cancer in March of 2016, with 29 days of radiation and chemo. My resection of 1 foot colon removed July 2016. I had a bowel blocakage August 2016 and had emergency surgery to remove scar tissue and blockage and then a reversal of my illesostomy in September of 2016. My question is after all of this and almost two years out now I still have 1 day a week where I feel colon spasms along with clustering and after one to two days of this I am just exhausted. It resembles Krohnes disease and I wanted to know if anyone else had similar issues and what they do when issues like this happen?

Jump to this post

Hi @jrsmarkey and welcome to Connect. I'm tagging a few other members – @brenz @mikendale @jinatolle @memorae12 – of the Colorectal cancer group to see if they have experienced colon spasms and clustering.

While we wait for others to respond, jrsmarkey, can you tell me a bit more about the spasms? You mention that they happen about once a week. Have you been able to determine what triggers them or if there's a pattern associated with them? Have you doctors suggested what might be the cause?

REPLY
Please login or register to post a reply.