What Are The Chances?

Late for the first day of class, I took the only seat available next to a mysterious young man wearing a dark trench coat and classic fedora hat. He glanced up to acknowledge my presence as the instructor introduced us to the schedule for writing our memoirs. It was then I realized my seat partner was probably very ill. Cancer perhaps. He was not just slender or thin. His appearance was emaciated  His skin more than pale. It was almost see-through. What little hair he had was sticking out beneath the hat was like peach fuzz. Like me, he had come to class to write his life story.

That first day we had a writing exercise and read to each other. My guess about Greg was correct. He was recovering from Leukemia. His story had begun several years before when he was still in high school. He'd been through his treatments, and was in remission when we met. I told him about my having had a rare bone cancer forty years before when I was about his age. There was an easy acceptance between us that I can only describe as a knowing sigh or shared exhalation that no one else in the room could discern. We were both survivors!

Twice a week for that first three weeks we shared our writings with each other, and sometimes with other members of the class. That fourth week I went to class with a heavy heart. My doctor had sent me to an oncologist. I had been diagnosed with Leukemia. It's a fairly rare cancer. According to government statistics for that year, in the US there were approximately 271,880 people alive who had a history of leukemia. In the county where I live there were only 32 Leukemia patients. It seemed so odd to realize that the two of us attended the same college, the same class and sat beside each other. What are the chances of that happening?

Though mine was a different type of Leukemia than Greg's, we had one thing in common called the Philadelphia Chromosome. I had no idea what that was, but Greg explained. A couple times after class we would stop and chat. He was always willing to help me understand. What was incomprehensibly new to me was old stuff to him. He asked me questions, good questions that made me think, that made me take to my doctor to get answered. We shared symptoms and how we handled them. We shared the emotional impact. He told me funny stories too, told me about Jacob's Heart, and Team in Training and Robin Williams coming to visit him in the hospital who had him laughing. His eyes lighted up when he spoke of these things. A fire burned there shining from his soul.

One day on campus, I saw him climbing a steep flight of stairs. That was something I couldn't do, and it surprised me. He seemed so frail beneath that trench coat, but there was a superman inside. He had been fighting his Leukemia for a number of years. He had suffered the ravages of chemotherapy. He'd had a bone marrow transplant. He'd been bedridden and close to death. He had recovered, recuperated and healed. Why would climbing stairs be a daunting thing for him when he already had the strength to beat cancer? I was encouraged for my own future. I was uplifted by his spirit of not giving into weakness. I was inspired to let my leukemia journey to just become another of life's challenges and not let it become something to destroy who I really am.

Today, another student from that class asked me if I remembered Greg. Of course I did. I was numb when she told me he had died just a few weeks ago. She had seen his obituary in the local paper.

I went on the internet tonight looking for his obituary. I found one for a Gregory Melendy. But, I couldn't make myself believe it was him. Some other young man with the same name had passed away. I studied the picture. Long hair, healthy sensitive face. Nope. Not my Greg. My friend must be mistaken. I looked harder at the picture. Read the obituary again.

There... a link.... saying to make donations to a music scholarship. I clicked on that page. Another young man, no hair this time. But full of face, smiling. I stared at it. The eyes. Maybe the eyes are familiar, I thought. No... it must be someone else with the same name. Just a coincidence that he attended the same college where I had met my Greg. Just a coincidence.

I stuck to my denial as I searched and read all the pages Google took me to see. I studied each picture. Finally it sank in. It was my Greg Melendy.

I am very sad.

'Til Death Do Them Part

This stuff is complicated and I am trying to learn what it means!

The eye of my cat, Timmy

What is the Philadelphia Chromosome and what does it have to do with me?

The chromosome abnormality that causes chronic myeloid leukemia (CML). Abbreviated as the Ph chromosome. I have this in my bone marrow. It is not normal to have it.

The Ph chromosome is an abnormally short chromosome 22 that is one of the two chromosomes involved in a translocation (an exchange of material) with chromosome 9.

To the best of my understanding chromosome 22 has divorced it's partner and is now marrying chromosome 9. They cannot get divorced. They will reside in my body until I die.

This translocation takes place in a single bone marrow cell and, through the process of the production of many cells from this one mutant cell, it gives rise to the leukemia.

The discovery in Philadelphia in 1960 of the Ph chromosome was a landmark. It was the first consistent chromosome abnormality found in any kind of malignancy. Now other cancers are being identified genetically.

The discovery led to the identification in CML cells of the BCR-ABL fusion gene and its corresponding protein. ABL and BCR are normal genes on chromosomes 9 and 22, respectively. 

The ABL gene encodes a tyrosine kinase enzyme whose activity is tightly regulated (controlled). In the formation of the Ph translocation, two fusion genes are generated: BCR-ABL on the Ph chromosome and ABL-BCR on the chromosome 9 participating in the translocation. 

The BCR-ABL gene encodes a protein with deregulated (uncontrolled) tyrosine kinase activity. The presence of this protein in the CML cells is strong evidence of its pathogenetic (disease-causing) role. 

The efficacy in CML of a drug that inhibits the BCR-ABL tyrosine kinase has provided the final proof that the BCR-ABL oncoprotein is the unique cause of CML.

The Ph chromosome is also found in a form of acute lymphoblastic leukemia (ALL). It seems highly probable that this form of ALL is due to the same chromosomal and molecular mechanisms as CML.

CML Treatment

HOW IS CHRONIC MYELOID LEUKEMIA TREATED?

The treatment of CML depends on the phase of the disease and the patient’s overall health.

The goal of treatment is a complete cytogenetic response, meaning that there are no cells with the Philadelphia chromosome.

The initial treatment for chronic phase CML is targeted therapy with the drugs imatinib (Gleevec), dasatinib (Sprycel), or nilotinib (Tasigna).

If there is no evidence of the Philadelphia chromosome and the blood cell counts are normal during the initial treatment, patients should continue the medication throughout their lifetime with regular monitoring to see how well the treatment is working.

Bone marrow/stem cell transplantation may be an option if targeted therapy is not effective.

Above information came from here

What is Chronic Myelogenous Leukemia?

Chronic myeloid leukemia (CML), also known as chronic myelogenous leukemia, is a type of cancer that starts in the blood-forming cells of the bone marrow and invades the blood.

 

Both names mean the same thing, but my doctor is calling it Chronic Myelogenous Leukemia, so I'm going to go along with him on this.

It is usually associated with a chromosome abnormality called the Philadelphia chromosome. In CML, leukemia cells tend to build up in the body over time, but in many cases people don't have any symptoms for at least a few years. 

I can look back on old blood tests from two years ago that indicated something was going haywire with my blood cells. It was thought I had infections at the time. I don't blame my doctors It is a common diagnosis for those types of blood results. At that time I did not have the increase in myelocytes that would have made the diagnosis more obvious. (more on myelocytes later) NOTE: Get copies of all your test results! You are legally entitled to them.

In time, the cells can also invade other parts of the body, including the spleen. CML can also change into a fast-growing acute leukemia that invades almost any organ in the body.

I do not have an enlarged spleen. That has been proven by CT scans. My CML has been diagnosed early, so it is not expected that I will have any aggressiveness coming up any time soon. 

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Photo is of myself in 2004, taken in Monterey, California. I remember the wind was blowing off from the ocean. It was a cold sunny day.

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This is part of an article from Scientific News as published in ACOR. I cannot find the original reference.