BRIAN ANDERSON: A Lab Report Save My Life?
Watch and Wait. MDS Doesn’t Hold Me Back
My story begins after a routine annual CBC Test check-up with my doctor. I was 49 years old. Overall, my complete blood count exam was uneventful, but a few days after my examination, I received a call from the doctor’s office asking me to return for a second blood draw.
I wasn’t concerned until my doctor said he couldn’t explain why my counts, particularly platelets and white blood cells, were so low. The anxiety began to climb when he referred me to a haematologist/oncologist. Healthy people don’t need to go there, do they?
Did my Search for Answers work?
During that first trip to the haematologist/oncologist in December of 2013, a bone marrow biopsy was performed and was found to be normal. Unfortunately, it did not shed any additional light on my condition, and my doctor could not pin down a Complete count diagnosis. I went through a battery of CBC tests. I tried a few different local doctors and spent those years receiving generic diagnoses of pancytopenia, thrombocytopenia, neutropenia, anaemia and even copper deficiency. The cause for my lowered levels eluded my doctors and frustrated me.
Although frustrated, I didn’t let my condition slow me down. I still ran 6-8 half marathons and 10K running events per year, joined a kickboxing gym, started biking and generally became more active than before. This wasn’t particularly easy. I was slow and never in contention to win a race, but I always had enough energy to finish.
Is Diagnosis the Complete Story?
Fast Forward: In the fall of 2016, my neutrophil counts started to decline, and my haematologist wanted to start me on the steroid prednisone. He was worried that my blood (ANC 0.2 X 10*3) were so low that I was at serious risk of getting potentially life-threatening infections. As much as I was concerned about infections, I was less interested in being on a steroid to see if it worked. Consequently, my wife and I packed up and flew to Moffitt Cancer Center in Tampa, Florida, for a second opinion.
A few CBC blood tests and another bone marrow biopsy later, my new doctor called with the results and a new diagnosis – de novo, hypocellular myelodysplastic syndrome (MDS). The subtype is refractory anaemia, a tested condition with excess blasts known as RAEB. He then told me my Revised International Prognostic Scoring System (IPSS-R) risk classification was Intermediate.
This risk is associated with the chance of MDS progressing to acute myeloid leukaemia (AML).
The hypocellular variant of my disease mimics aspects often associated with another disease affecting the bone marrow, aplastic anaemia. A Complete blood count test was needed. This similarity is rare but happens in 5-10 % of MDS patients. The difference in my case was the presence of 5% abnormal blast cells and dysplasia (my blood cells’ abnormal shape and size) in my bone marrow.
Does it all begin with the Initial Treatment?
My doctor chose to initially treat my MDS using an immunosuppressive therapy of horse anti-thymocyte globulin (h-ATG), as would be done if I had aplastic anaemia. He saw a 30% chance that using h-ATG might “reset” my marrow and hopefully see my blood counts return to normal – at least for a while. We thought 30% was good enough and decided to initiate treatment.
In December of 2016, just over one month after diagnosis, I became an inpatient at Moffitt Cancer Center and received the h-ATG treatment. The treatment went well except for a few incidents of unnerving fever/chills and the necessity for a few blood count platelet infusions. Fortunately, my wife could stay in the room and sleep on a large chair converted to a flatbed. Family support is as important to the healing process as the knowledge and skills of doctors and nurses.
Out with tons of Medication
I was discharged with a list of prescriptions for my CBC tests that included antibiotics, anti-viral and anti-fungal drugs, steroids and the immunosuppressive drug cyclosporine. Over time, I tapered off the steroids, followed later by the anti-bacterial, viral and fungal medications. Eventually, the only drug that remained was cyclosporine. My blood was monitored weekly with Complete count reports, and adjustments were frequently made to the amount of cyclosporine I needed.
After 5 months, it was clear.
The treatments did not affect the bone marrow we had hoped for. My white blood cell and neutrophil counts fell to levels that I had before the h-ATG was administered. Additionally, my anemia worsened. As my haemoglobin dropped, so did my energy. Before the treatment, I had completed some challenging half marathons. And I now found myself getting winded walking up one flight of stairs.
In May of 2017, I had a conversation with my doctor — it was clear the treatment was ineffective, and we decided that I should stop taking the cyclosporine.
For you, was the Watch and Wait also painful?
As many struggling with this disease know, “watch and wait” is the CBC Test treatment plan for many low to intermediate-risk complete blood count patients. I am now in that watch-and-wait category.
What does watching and waiting mean for me? Right now, it calls for semi-annual trips to Moffitt to see my doctor and bi-monthly blood draws for routine CBC w/diff and a metabolic panel. No over-the-counter or other medications are required; azacitidine (Vidaza®) is not yet needed.
There aren’t any currently recruiting clinical trials that apply to my situation.
My Moffitt transplant doctor agrees with my current treatment plan, which includes CBC Testing and Complete blood reports. He and his expert transplantation team stand ready. And trained to perform an allogeneic stem cell transplant. The only known treatment to cure MDS is that he does not think now is the right time. He worries about my excellent health and the advantage of my relatively young age. The risks associated with stem cell transplantation outweigh the benefits. The game now is to monitor my consistently substandard blood test results and live my life.
Does Life Move Ahead for most or all of us?
My Watch and wait status lets me continue participating in MDS Walks in Boston and 5K March for Marrow runs in Washington, DC. It lets me continue to work, travel, and more fully participate in my family’s lives.
But watching and waiting is frustrating because I’d like this to be… done. I’d prefer not to be anaemic and have more energy. I’d like to not worry about excessive bleeding or bruising. I also don’t want to worry about contracting a potentially deadly virus, fungus or bacteria whenever I leave home.
Even shaking hands with a friend can have devastating consequences.
In time, I know that a stem cell transplant might cure my MDS and return my life to relative normality. Still, it can potentially introduce new, equally life-threatening medical issues, for example, graft versus host disease, where my donor transplant’s immune cells attack my organs and tissues.
I also decided to get another opinion from the Dana Farber Cancer Institute team in Boston, MA. There, my doctor did even more genetic testing and looked at the length of my chromones for short telomeres. Having shorter telomeres at the end of chromosomes is not a good thing from a prognosis perspective. After the CBC tests returned, I discovered my telomere length was normal. With no additional discovery of genetic or chromosomal abnormalities, I was returned to my Watch and Wait status.
Deciding to take more control of my future.
I started a support group for CBC-tested and anaemia-test-positive patients with MDS in the Washington, DC, area. Sharing my Full Blood story and listening to the participants’ stories has been a wonderful experience. I also journal my thoughts to keep my mind focused and sharp. I have learned to lean on the support of family and friends and do so without reservation or hesitation. This is too big for one person to handle alone.
I keep a cautious eye on my labs, continue to work with my support group and maintain a positive attitude. Before I learned of the significant risks, a transplant was what I wanted. Now, I hope to live as long as I can in this watch-and-wait state with a good quality of life before a transplant becomes necessary. It’s my best plan, and I’m happy to have it!