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Hi, stage 4 colorectal cancer here

Colorectal Cancer | Last Active: Aug 3, 2023 | Replies (101)

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@fiona007

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.

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Replies to "Hi, I am glad your husband is doing well. Can you tell me what research hospital..."

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.