Meet Stage IV Survivor, Mike Mancini

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Mike is a stage IV survivor — facing two recurrences since his diagnosis — and Fight CRC Ambassador. He lives in Connecticut with his girlfriend, Carole, also a stage IV CRC survivor. Read their story here.

My Story

In June 2017 at age 42, I was diagnosed with stage IV colon cancer. I was in the prime of my life; I was in excellent physical shape, I was at the top of my professional career in both title and compensation, and I was in a great relationship. I very quickly lost my health and fitness. The person I was dating ended our relationship after my third round of chemo. Then I lost my job at the company I was working at for over 20 years. I woke up from surgery with a temporary colostomy bag. I went through six months of FOLFOX with Avastin and then had my colostomy reversed. 

I had a recurrence in my liver in Sept 2018 and had that tumor ablated. I was then put on maintenance chemo (Xeloda) with Avastin for a little over a year. I returned to work after being on leave for 17 months, but had to take a significant pay cut and a change in job title/function. It was about that time that I found Fight Colorectal Cancer and signed up for Call-on Congress in March 2019. I was thrilled to connect with patients and survivors not just living life, but thriving. I returned to my workout routine. I started pursing my MBA at night. I dove head first into advocacy and raising awareness for the cause. I also signed up for my first Climb for a Cure in 2019 and was selected as an Ambassador for Fight CRC for 2019-2020. I started a new relationship with a fellow CRC survivor that I met at Call-on Congress. 

I had another recurrence in January 2020 and did another six months of FOLFOX with Avastin, followed by another six months of FOLFIRI with Avastin. Through the ups and downs of this journey, I have tried to relentlessly share my story in hopes that it can save someone’s life someday. I am proud of the advocacy work I have done to date and look forward to continuing to raise awareness for the cause.

Tips for others

Being able to get back to working out again was very important for both my physical and mental well-being. Even though I had to start out slow with 10 weeks of Yoga, I slowly started weight training again and kept working my way up to increasing my strength and rebuilding all of the muscle I had lost. 

Learn More About Early-Age Onset CRC

Colorectal cancer incidence in those under 50 years old is increasing. You're not alone — we're here for you.

How have your cultural identities influenced your survivorship journey with colorectal cancer? 

I come from a very traditional Italian family who doesn’t like to talk about personal issues and doesn’t believe in sharing your personal journey with anyone else. I have chosen to be very open and public about my fight and my journey in hopes that it can save someone else’s life some day. It has caused challenges internally with family relations when others pass judgement on how I choose to live my life and share my experiences. I’m always very careful about privacy settings when I post things on social media so I can restrict what family members see in an effort to quell the drama.

What was your experience like first getting screened for colorectal cancer? What do you know now that you wish you knew then? 

My first colonoscopy was an emergency colonoscopy because I had a blockage in my colon. I really had little to no warning signs to alert me to the fact that I had stage IV colon cancer and didn’t know anything about the warning signs and symptoms. My next colonoscopy, a little over a year later, was a very simple procedure. I went through the typically prep day that most people go through to prepare for the procedure and the procedure itself was a piece of cake. 

Everyone likes to complain about the prep…but I say it’s better than going through months or years of chemotherapy.

What types of treatment were you first offered? Were there any barriers in the way of getting access to the treatment you wanted?

I was offered FOLOFX with Avastin, which is a standard chemotherapy treatment for colorectal cancer. I didn’t encounter any problems or barriers getting access to the treatment. I was working full time and had a Consumer Direct Health Plan through my employer. All that was required was submitting it through the insurance company for approval and it was approved for the duration of my chemotherapy regiment. 

What are the specific treatments you have received over the course of your survivorship journey? Which treatments have been particularly successful from a whole-health perspective and why?

I’ve had surgery, chemotherapy, colostomy, colostomy reversal, liver ablation, and a thoracentesis. It’s difficult to say which have been most successful from a whole-health perspective. Surgery, while welcomed because it’s the quickest way to remove the cancer, leaves you with scars and can cause future limitations (i.e. range of motion). Chemotherapy, while effective, leaves you with neuropathy, mental and physical fatigue, and sexual health challenges. Overall, I’ve lost weight, muscle mass, and deal with stress from many avenues (mentally, physically, emotionally, financially, and sexually). All of these treatments can leave you feeling like you are less of a person than when you first started.

What side effects related to treatment have you experienced? What was done to help manage them? 

Neuropathy, hand/foot syndrome, blemishes, skin rash, nausea, loss of appetite, extreme fatigue, diminished mental capacity. The most common help is medication to help manage the symptoms. I also use medical marijuana.  In addition, sometimes taking a break from treatment is also a step that is taken to help manage the side effects.

Have you either participated in or considered clinical trials? What has your impression been?

I’ve considered them, but standard of care is still working. The impression I get is that it’s a lot of work on behalf of the patient to learn what’s out there and if you qualify. They are also very scientifically written, so it’s not easy to just figure out if you qualify. It takes a lot of questions and follow up work to try to get into one.

4 thoughts on “Meet Stage IV Survivor, Mike Mancini

  1. Keep going!!! The good you are doing will save others and help build awareness! Your story inspires and teaches! Thank you for sharing and know we’re all rooting for you and your health and happiness.

  2. You are Micheal, you are amazing. You live this life, we just all read. I do say prayers for you at random times of the day. Keep fighting love, Cheryl Duncan

  3. You are very strong .
    Thanks for getting the message out.
    I am a caregiver who fights everyday to help.
    💙💪💙

  4. Thank you for sharing. My daughter Beth has colon cancer without remission for over 2 years. We are at the point of clinical trials.
    It is exhausting for the parent as well as the child. She is resilient and devoted to looking at every option.
    Your story helps!

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