I’ve been healthy most of my life then what happened next?

JOHN SOPER

While I’ve been generally healthy for most of my life, I’ve had several instances of elective or emergency hospitalizations. The first of these involved a bleeding ulcer in which my haemoglobin dropped to around 6-7 g/dl. I was CBC tested and treated in a hospital in California at the very beginning of the AIDS crisis. Although there were no kits for AIDs, I was going into full shock and received my first transfusion.

Several years later, I had another ulcer and received my second complete transfusion. After this, I became more conscientious about a full routine Complete Blood Count checks and physicals and became a 4-gallon Red Cross blood and platelet donor. I was also continuing to battle lifelong weight, cholesterol and high blood pressure issues.

John with his youngest daughter, Dannie

In January of 2014, I discovered that I had atrial fibrillation. After running many HPV variant tests, my cardiologist performed a cardioversion to correct the issue. While this seemed to be successful, a few weeks later, I began experiencing some angina-like symptoms. After performing an angiogram, we realized that I needed a quintuple coronary bypass.

A few months after surgery, my cardiologist told my primary care CBC doctor that I had macrocytic anaemia. My primary care doctor realized that I needed to see a haematologist.

Dr. Abby Bova had already taken care of my wife’s breast cancer, and we knew that she was the perfect fit for us. She quickly ordered every conceivable HPV full exam for me, including a bone marrow biopsy.

When my wife and I finally saw Dr. Bova, she was beaming joyfully! She told us that all of the results were negative.

Unfortunately, I still had macrocytic anaemia. I would see her every three months, and all CBC lab results, except those concerned with the anaemia, seemed to be consistently in the “Normal–Low Normal” range.

Sculpture of Captain Love, an elite navigator for the Army Air Corps in World War II. When we see him we know to turn to the right to go to the hospital. I am posing in my Eagle Scout “Navy” flight jacket.

Returning home

When we returned to Oklahoma City, Dr. Bova repeated her earlier CBC lab complete tests, including a new bone marrow biopsy. This time, the full results showed that I had 4 mutations and altered chromosomal results. My LDH levels were substantially elevated, my neutrophil count continued to rise, and we were now detecting blasts in my peripheral blood.

Dr. Bova wanted to prescribe “Jakafi” (Ruxolitinib) and “Vidaza” (Azacitidine). However, she found that only one Phase 1 trial in the country used them. The trial was at MD Anderson in Houston. She contacted Dr. Naval Daver, the lead investigator in the trial, and submitted all of the CBC blood data she had on my case.

MD Anderson contacted me in just a couple of days. We drove to Houston, repeated my original testing for CBC, and confirmed all other exams. I returned to Houston in two weeks and was officially admitted to the study. The official diagnosis of MDS/MPN is Unclassified.

I have now had three months of Jakafi alone, followed by another bone marrow biopsy. After completing that regimen, I had three months of combined Jakafi/Vidaza therapy, followed by another check and bone marrow biopsy. That biopsy report showed no increased blasts or HPV evidence of a clonal neoplasm. In another month, I will have a third “staging bone marrow biopsy”.

While my white counts are behaving nicely, I am becoming transfusion-dependent. We have mutually agreed that report is needed daily under the current situation. The haemoglobin level of less than 8.0 mg/dL warrants a transfusion. I have had about 8–10 transfusions at this time. My ferritin concentration is approximately 1,500 ng/ml. We know that Vidaza is causing myelosuppression at this time, but we are also confident that it will eventually allow my haemoglobin levels to rise.

Christ the Healer at Hopkins

During my last visit with Dr. Daver, I asked him about some of my quality controlled HPV genetic test results. He said, “You’re a scientist. You’re aware of the statistical variability in any laboratory measurements.” It is very important to me that both of my Doctors value my input and that I am involved in making decisions that all of us are comfortable with.

I’ve been actively involved with research at Johns Hopkins, Mt. Sinai, the University of Arkansas for Medical Sciences, and the University of Maryland. I can’t conceive of a better team or overall medical care I am now getting.

Let me share some final quick comments with you.

(1). As I stated earlier, I intend to do some particular things. I have a very complicated initial diagnosis. As far as Dr. Bova knows, I am the only person in the entire four-state Mercy medical system to receive both Vidaza and Jakafi. I’m also the only crossover patient (MDS/ MPN) to be getting these medications. My clinical trial lasts five years, and hopefully, I may produce some interesting HPV results by then.

(2) There are also things that each of you can do. First and foremost, your “primary caregiver”, wife, husband, other family members, etc., are among your most important assets. Always try to give them as much consideration as they give you. Aggressively maintain the other valuable contacts that each of you already has. I’m convinced that the level of achievement that I could access in my early career came from the fact that I’ve maintained those contacts for many years.

I realize that none of us know how our medical conditions may progress

But We Can Choose Not to let that fact control our lives

Every day I was a Hopkins fellow, I would pass through the old main lobby and see a 9-foot statue of “Christ the Healer”. While Hopkins represents excellence in medicine, this was a constant reminder that there is a power beyond even what the world’s best physicians can do.

(3) Another very important support that you have comes from your fellow patients. My original “MDS buddy” (the same one my father treated many years before) told me when we first met “, I have this tattooed on my forehead; the drugs work until they don’t”.

Several weeks ago, two of us were getting Vidaza treatments. I asked the fellow next to me if he had MDS. He didn’t know what that was. I asked him why he was receiving injections, and he told me that he had AML. When I asked him how long he had been treated and tested with CBC kits, he told me that he’d been receiving treatments for five years. I was stunned to find that there was a fellow right next to me who had the very condition that I had thought was supposed to be “the end of the road” for MDS patients. He seemed to be doing very well to me!

CLOSING THOUGHTS

When I think of the comments of my “MDS buddies”, I realize that none of us know how our medical conditions may progress from the reports after checking but we can choose not to let that fact control our lives.

For my part, I am preparing to retire and try to carry out some of the things above that I’ve already said I can do. Frankly, the most important thing we can do now is rejoice in each new day we’re given and “Make Memories.”

Thanks for reading “My HPV Kit Story.” I hope you enjoyed it as much as I enjoyed writing it!