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Living with colorectal cancer - Meet others & come say hi
Colorectal Cancer | Last Active: Oct 23, 2023 | Replies (152)Comment receiving replies
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.
Replies to "Hi. I'm Ray from Fort Worth, Tx. Diagnosed in Dec 2010 with colorectal cancer. Underwent six..."
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.
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?
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Welcome @rayleemorris and thanks for sharing a bit of your story. Given you multi-year experience with an ostomy, I hope you'll provide tips and experiences with other ostomates in this discussion:
- Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/
What chemo "cocktail" are you on? What side effects do you find to be the most prevalent or challenging?