Hi, stage 4 colorectal cancer here

My husband was diagnosed with Stage IV colon cancer with 22 metastatic tumors in his liver in September 2020 after a totally clean, see-you-in-10-years colonoscopy just 22 months before. We thought it was a death sentence. We opted to go to a research-based hospital and cannot recommend that enough! Yes, it’s 4 hours round trip, but those 4 hours compared to the level of local care we received is PRICELESS! Emergency surgery after colon blockage due to the size of his tumor, colostomy for six months, reversal and reconstruction as well as hepatic artery pump for his liver. He has had 39 chemo doses so far with extremely low side effects - he still has all his hair, only very mild nausea at the very beginning and very mild neuropathy after several doses. And the most positive attitude continues to amaze me. The team approach to care is invaluable. I still do my research via other high-level research facilities regarding options they may be exploring. Perhaps you have someone who can do that for you. I am sorry you are on this path…watching someone go through it is so hard because you can’t fix it for them. Lean on others. Accept ANY help offered. You need your energy for fighting this horrid disease! My prayers to you!

Hi, I am glad your husband is doing well. Can you tell me what research hospital you went to please?
I was diagnosed stage 4 with metastatic tumors in the liver, ovary and peritoneal in May 2020. I went through 14 months of chemo and scans were good so i took a month break to visit family. October 2021 my pet scan showed no tumors left except for a 5" tumor still growing in my right ovary. I had laparoscopic surgery to remove the tumor. Unfortunately, when removing the instruments the tumors broke away and attached to the surgery incision sites which left me in a lot of pain ever since. My PET scan in January revealed that all my tumors came back plus another one putting pressure on my ureter requiring a stent which has been causing additional pain that cannot be explained. I am now being told that because the tumors returned so quickly that it is an indicator of less time left and I was quoted approximately 12 months in June 2022. I am looking into alternative treatments and also trials. Oncologist does not want me to start any trials until I have exhausted chemo which has been causing me extreme fatigue this time. I don't know if that is the right approach. Every oncologist I have had does not seem to be up on trials or even bothered. I noticed that a number of MSS colon cancer trials were stopped because of lack of participation or money. Not one oncologist in the past 2 years has ever mentioned trials and when I mention it they don't know anything. I would love to hear from you or anyone else being told there is no hope since the tumors came back so quick and what their experience is/was. Love and hope to anyone reading this.

I am so sorry your are going through all of this. The road is unbelievably difficult. My husband receives his care at University of Michigan Rogel Cancer Center and we have been extremely pleased with the care he has received from his team. They have mentioned a trial on new medication coming down the pipes if the chemo were to stop working. As cancers present so differently in each person, I don’t know if that trial would be applicable to you but, if you are close/willing to travel, it may be worth inquiring at UofM. In the interim, please keep fighting for the care you want and need. I hope you have an advocate for you in this so you can keep your energy for your health. Prayers to you.

Hi, I am glad your husband is doing well. Can you tell me what research hospital you went to please?
I was diagnosed stage 4 with metastatic tumors in the liver, ovary and peritoneal in May 2020. I went through 14 months of chemo and scans were good so i took a month break to visit family. October 2021 my pet scan showed no tumors left except for a 5" tumor still growing in my right ovary. I had laparoscopic surgery to remove the tumor. Unfortunately, when removing the instruments the tumors broke away and attached to the surgery incision sites which left me in a lot of pain ever since. My PET scan in January revealed that all my tumors came back plus another one putting pressure on my ureter requiring a stent which has been causing additional pain that cannot be explained. I am now being told that because the tumors returned so quickly that it is an indicator of less time left and I was quoted approximately 12 months in June 2022. I am looking into alternative treatments and also trials. Oncologist does not want me to start any trials until I have exhausted chemo which has been causing me extreme fatigue this time. I don't know if that is the right approach. Every oncologist I have had does not seem to be up on trials or even bothered. I noticed that a number of MSS colon cancer trials were stopped because of lack of participation or money. Not one oncologist in the past 2 years has ever mentioned trials and when I mention it they don't know anything. I would love to hear from you or anyone else being told there is no hope since the tumors came back so quick and what their experience is/was. Love and hope to anyone reading this.

Hi Fiona, you mentioned an interest in learning more about available clinical trials for metastatic colon cancer. You can search clinical trials at Mayo Clinic here: https://www.mayo.edu/research/clinical-trials

You might find it easier to call Mayo Clinic Cancer Trials to talk with a coordinator to see if there is a trial that would be specific to your diagnosis.
Cancer-Related Clinical Stuides Questions
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

You mention that your oncologist recommends seeing how it goes with your current chemo regimen first, and if it doesn't get the hoped for results, then search for a clinical trial. That sounds reasonable. Keep them posted on your fatigue and side effects. You want quality too.

I am so sorry your are going through all of this. The road is unbelievably difficult. My husband receives his care at University of Michigan Rogel Cancer Center and we have been extremely pleased with the care he has received from his team. They have mentioned a trial on new medication coming down the pipes if the chemo were to stop working. As cancers present so differently in each person, I don’t know if that trial would be applicable to you but, if you are close/willing to travel, it may be worth inquiring at UofM. In the interim, please keep fighting for the care you want and need. I hope you have an advocate for you in this so you can keep your energy for your health. Prayers to you.

Hi Fiona, you mentioned an interest in learning more about available clinical trials for metastatic colon cancer. You can search clinical trials at Mayo Clinic here: https://www.mayo.edu/research/clinical-trials

You might find it easier to call Mayo Clinic Cancer Trials to talk with a coordinator to see if there is a trial that would be specific to your diagnosis.
Cancer-Related Clinical Stuides Questions
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

You mention that your oncologist recommends seeing how it goes with your current chemo regimen first, and if it doesn't get the hoped for results, then search for a clinical trial. That sounds reasonable. Keep them posted on your fatigue and side effects. You want quality too.

This is my 1st time posting here and I'm not really sure of how things work. But like Michele I was diagnosed with Stage IV Colon Cancer in June. My liver has so many large tumors that it is inoperable at the moment. I've had 4 treatments of Folfox, then I was unable to have chemo for 6 weeks because of low white counts. Last week I finally started up again and they added Avastin to the chemo mix, followed by Neulasta to bring up my WBC counts. I don't really understand how to "connect" with people like Michele but I'm interested in hearing about others' experiences and maybe learning useful tips on how to deal with all of this. So I thought I'd post this and see what happenens. Thanks for listening. Sue

Hi, Sue. You posted exactly right and in the right place to connect with other members living with metastatic colon cancer like @margreet @wifemom3 @lisag03 @fiona007. I'm adding their usernames to my message to make sure they see your post and join me in saying "Welcome".

I bet it was disappointing to have to pause chemo for 6 weeks while you waited for your white blood cell count to recover. I'm glad you're back on track for the time being and getting Neulasta to help encourage the white blood cell production. How did your chemo treatment go last week?