Share Your MDS Story

After surviving APLm3 leukemia 2008-2010 and being pronounced ‘cured’ in 2014 I did my best to “het bsck into life”. 

I, never feeling ‘myself’ and struggling with anemia(s) and all sorts of body pains— nonetheless, I was glad to be alive and I forged ahead. 

Then in 2018 my left kidney/flank began to hurt considerably and constantly. My symptoms began to stack up with terrible bouts of intense body pain and exhaustion.

I brgan to show up at the ER and my blood counts were off especially my hemoglobin which would wildly swing beteeen 10 and 7 on my CBCs. Things continued like that for almost 2 years and my dictors were stumped so I made my way to Mayo Clinic in Rochester, MN.

Through some very detailed, caring and heroic doctoring by my hemotologist (Dr. Pardanani) I was found to have an ongoing unique hemolytic condition driven by a U2AF1 mutation coulped with two congenital anomalies. 

Continuing to look for answers I went to MD Anderson in Houston Texas where Dr. Danielle Hammond had stsrted a surveillance program in whuch I was found to be high-risk ccus preMDS.

For a year starting in 2025 I entered the program and was place in a Canukinumab trial. Along with yhe help of my lical dictors and Dr. Hammond ive been able to maintain steady improvement re: my symptoms. 

Recently I have enterd into the Inqovi trial that has been found to slow orceven halt disease progression in cases like mine. Through Dr. Hammonds cooperation with other leading researchers across various cancer research organizations, I will stay on the Inqovi protocol for aboit a year hoping thst the benefits will hold me steady until i can enter into the neo-antigen vaccine trials being studied and formulated in labs associated with MSKCC in New York.

That is the very basic skeletal outline of my joirney with blood cancer and now MDS. Of course yhere is a lot more to the story— enought to fill a thick book, for sure.

My story, like so many others, is much deeper and is being written  on all the layers of my human construct— body, mind and spirit. My relationships are the mitigation of the fesr and pain and doubt— starting with my relationship with God through my Savior and Lord, Jesus Christ. M wife, Karla, has been my bulwark at every level durinf every stage and at every twist and turn. 

I have found new friends among my care givers and my doctors. 

If you are struggling ans wondering whstvto do next, all I can say is that along my storyline I found Dr. Pardanani at Mayo and Dr. Hammond at MD Anderson to be professionals who’s skill at doctoring is only surpassed by their inborn gifts of caring and healing… reach out to them if you can.

So— now I plan to continue this leg of the journey and see how Inqovi suits me. Then, Lord willing, I’ll take the next step and allow the journey to move me along the path that God has marked out for me… one step at a time/one day at a time— with thankfulness and faith as my buffer along the way.