My Story

The Journey Begins

Karen & MichaelDecember 2009: Life was uneventful but good – I’ve always been wonderfully healthy and come from a long line of healthy, long-lived individuals. I usually get a physical every year but by chance skipped a single year because I had no problems (that I knew about). So, my last blood work had been just two years before. I was scheduled for minor surgery the first week of January 2010 and had gotten routine pre-surgery blood work done on December 23, 2009. On December 30, my doctor called to tell me the surgery must be postponed because the blood work revealed I was anemic and my platelet count was very low. At that time he referred me to a hematologist who I first saw on January 4, 2010.

On my way to the appointment, I picked up a copy of my prior lab results from my family doctor and was shocked at how bad they were. My hematologist scheduled a bone marrow biopsy for the following day and requested “rush” results. Two days later, he confirmed a diagnosis of Acute Myelogenous Leukemia (AML) with 20% blasts and immediately referred me to the University of Maryland Cancer Center. Simplistically speaking, blasts are the immature cells that grow into white blood cells, red blood cells, and platelets. When the blasts are defective, they don’t mature and differentiate, and they crowd out the healthy cells.

A second biopsy pretty much confirmed the initial results, with the added subtype of “complex cytogenetics” (meaning that more than three chromosome abnormalities are present and making treatment more difficult); however, the blasts were only 17%. In my case, this difference means nothing in terms of treatment or prognosis but the diagnosis could be labeled MDS (Myelodysplastic Syndromes) instead of AML since the blasts were less than 20%. The prognosis is equally bad because of the cytogenetics and the fact that all three cell lines are affected by the cancer. The labels can be misleading because some types of AML and many types of MDS are not as serious as the high risk MDS that I have. MDS has also been called “pre-leukemia” but this is a misnomer. No matter what it’s called, I still have bone marrow cancer, i.e. leukemia, that is curable only with a bone marrow or stem cell transplant.

My oncologist decided to try me on one of the newer chemo drugs, Vidaza (generic name azacitidine), approved by the FDA about six years earlier in 2004. I began my first cycle January 18, just two weeks after my first visit to the hematologist. This is not a cure but an attempt to control the MDS and try to get it into remission while awaiting the transplant. Vidaza has no effect on some patients and a negative effect on some others. For many, it takes four or more cycles to show any benefit. Luckily, I showed almost immediate, very positive effects.

A biopsy after my 3rd cycle showed only 5% blasts, borderline normal. All of my blood counts were greatly improved.

I had another biopsy after 7 cycles and was still holding my own at 5%.

As of September 7, I started my 9th Vidaza cycle with all main blood counts in normal range! My doctors were urging me to move forward with a bone marrow transplant. Unfortunately, the Vidaza will quit working at some point – no way of knowing when but for many patients, after 12-18 months. At that point, the probability of a successful transplant would be greatly reduced.

I considered three major transplant centers:  University of Maryland Medical Center, Johns Hopkins University, and Seattle Cancer Care Alliance. Although each has advantages and disadvantages, and each has its own areas of focus, I decided to go to Johns Hopkins, about 29 miles from home.  Once this decision was made, I continued with my monthly Vidaza treatments and waited for a matched donor to be located.

Both the best and strangest part in all of this is how well I am feeling! I’m very grateful that I don’t feel ill but by the same token, it’s difficult to contemplate proceeding with risky treatments when I feel perfectly well despite the life-threatening disease.

November 2010: A perfectly matched (10/10) unrelated donor has been found! My bone marrow transplant is scheduled for the end of this month.

And thus begins our journey….

Here we go again…

July 2012: Once again, life is good. I’ve done fantastically well post transplant and am looking forward to my 20 month anniversary, another milestone beyond which the chances for serious graft versus host issues are greatly lessened. I have a small ear ache that persists a few weeks. Hematologist sees nothing but recommends seeing my ENT who discovers a small raised red spot on the base of my tongue. A biopsy a month later confirms cancer, squamous cell carcinoma, unrelated to my prior MDS or treatments. A PET scan shows suspicious areas in lymph nodes on both sides of my neck so the cancer is labeled T1N2cM0 (small tumor, bilateral local metastases, no apparent metastases elsewhere), Stage IV, HPV+. Back to Johns Hopkins where diagnosis is confirmed and surgeries scheduled in October.

And yet again, the strangest and most difficult part is proceeding with risky treatments when I feel perfectly well despite the life threatening disease!

November 2012 Update: My surgeries went well with the happy outcome of NO cancer detected in any of the 92 lymph nodes removed. Based on that and the clean margins at the original tumor site, I’m not having any radiation or chemotherapy. I’ll have another MRI with contrast in six months and quarterly clinical exams with the scope for the next three years just to be cautious but my surgeon is very pleased and optimistic. She said she wished all of her cases were as joyful as mine.

November 2017 Update: I passed the magical 5-year mark and am now considered cured. Annual visits for otolaryngology, semi-annual for hematology.

And yet again…

October 2020 Update: My original MDS has relapsed after nearly 10 years, once again an outlier. I was treated with six months of Vidaza and attained remission; however, I relapsed again, diagnosed in September 2021. I’m much sicker this time around – the disease is growing more aggressive.

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