Hi Jason, Your story has been so inspirational and uplifting to me. I, too have MCL. Am on my second line of treatment and in a clinical trial out at MDAnderson in Houston, Texas. It was one year this past November that I began, and the course of oral pills had me in clinical remission after four months. A lot to be grateful for. So much of what you said is exactly what I've told friends and family. I will continue to keep you in my thoughts and hope that we, as well as everyone else with this rare blood cancer, continue to succeed and stay cancer free. Thanks for sharing your story. Suzanne
If I may ask, were you in a watch and wait period before starting any treatment, if so for how long? What pills did you take or are still taking,, and what is the clinical trial at MDAndersond that you are on. I too have MCL since 2020(when I first was diagnosed) and had a consultation with a Dr. at City of Hope. I was told and I read that watch and wait is an option if not more severe symptoms are present. Thank you.
Hello Jason , I was diagnosed with MCL in 2009, I completely agree fatigue is a major issue, I found it very helpful to build rest into my daily regime, we all eat regularly, rest regularly, even if feeling ok , don’t skip the rest . I found very slowly over time my fatigue was diminishing, I gradually reduced my rest periods, in my experience, it’s important not to overreach as one goes backwards. Stephen Ireland.
MCL is not one disease. Pathologists can identify patients with several different tweaks in the genome of the MCL cells. Major thing is mutations of the P 53 gene. Another is a SOX11 only presentation. Etc.
Hi Jason,
Your story has been so inspirational and uplifting to me. I, too have MCL. Am on my second line of treatment and in a clinical trial out at MDAnderson in Houston, Texas. It was one year this past November that I began, and the course of oral pills had me in clinical remission after four months. A lot to be grateful for. So much of what you said is exactly what I've told friends and family. I will continue to keep you in my thoughts and hope that we, as well as everyone else with this rare blood cancer, continue to succeed and stay cancer free. Thanks for sharing your story. Suzanne
If I may ask, were you in a watch and wait period before starting any treatment, if so for how long? What pills did you take or are still taking,, and what is the clinical trial at MDAndersond that you are on. I too have MCL since 2020(when I first was diagnosed) and had a consultation with a Dr. at City of Hope. I was told and I read that watch and wait is an option if not more severe symptoms are present. Thank you.
Hello Jason , I was diagnosed with MCL in 2009, I completely agree fatigue is a major issue, I found it very helpful to build rest into my daily regime, we all eat regularly, rest regularly, even if feeling ok , don’t skip the rest . I found very slowly over time my fatigue was diminishing, I gradually reduced my rest periods, in my experience, it’s important not to overreach as one goes backwards. Stephen Ireland.
Stephanie you ask the best questions…this was a good one !!
MCL is not one disease. Pathologists can identify patients with several different tweaks in the genome of the MCL cells. Major thing is mutations of the P 53 gene. Another is a SOX11 only presentation. Etc.
Jason, did I understand correctly? Did you say that your blood test came back normal?