I WILL NOT LOSE HEART

Scripture tells us: "... do not lose heart, but I am heart-broken. It is the unexpectedness of death that causes despair. I think of those sweet little children and caring adults in Connecticut, who lost their lives… such a senseless act of violence. I cannot imagine the pain those families must endure.

Another heartbreak happens when we are blind sighted by the sudden death of a positive person, who is feeling better than ever, who says that life is good, and hope for cancer maintenance or cure is within his reach. When I start to feel really good and a little complacent about my situation, it is then that reality shakes me to the core.

The CLL/SLL community just lost a cancer warrior. Today in Lake Stevens, Washington, was the memorial service of Randy Shirley, who was a participant in the ABT-199 clinical trial. He was 55-years-old when he died. Just like most of us on the kinase inhibitors, on Monday Randy remarked that he felt better than he had since he was diagnosed. Randy’s drug dosage was increased Tuesday. Wednesday he died. This was reported by Dr. Brian Koffman (http://bkoffman.blogspot.com/2012/12/randy-shirley-another-cll-warrior-passes.html).

There are a number of us who have volunteered in clinical trials to be participants in testing kinase inhibitors to manage CLL/SLL (Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma). The three drugs that are presently being tested are: (1) ABT-199, (2) GS-1101 (formerly known as CAL-101), and (3) Ibrutinib (formerly known as PCI-32765).

I knew Randy virtually from an interactive site about leukemia. He was an optimistic soul. He did not let leukemia own him. Randy’s motto was “Never, ever give up!” Randy was not supposed to die. The cancer treatment was working for him. So you see, the reality is that life is fragile and you can still die, even if you are upbeat and proactive.

I used to say that anyone can die walking across the street and getting hit by a truck. I don’t say that anymore, because it minimizes the daily struggle of a cancer patient.

Even though I am heart-broken, I have not lost heart and I have not lost hope. I know that a positive and warrior attitude will make my life’s journey a quality one. I will still take my chances and live my life with gusto, gratitude and love. I will not live in fear. And I will thank God for every single day I have on this earth with the people I love.

WHAT IS HOPE?

Esparanza…

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”

― Shel Silverstein

According to Merriam-Webster Dictionary, HOPE means “to desire with expectation of obtainment.” Wikipedia contributors state that “Hope is the emotional state which promotes the belief in a positive outcome related to events and circumstances in one's life. Despair is the opposite of hope.”

This weekend the 54^th Annual Meeting of the American Society of Hematology (ASH) is underway in Atlanta, Georgia. My doctors at National Institutes of Health (NIH) in Bethesda, Maryland, and M.D. Anderson in Houston are presenting their findings on the magical drug Ibrutinib (formerly PCI-32765), along with other leukemia experts from The Ohio State University. The phrases “promising,” “has the potential to improve long-term prognosis for patients,” “high response rates,” “durable remissions,” “including patients with high-risk disease (me),” “effective and safe targeted treatment option,” “manageable toxicities,” give me hope.

Let me review what chronic lymphocytic leukemia (CLL) is for those of you who asked. It is a blood cancer that causes malignant white blood cells to gather in the lymph nodes, bone marrow, blood, and other organs of the body. The cancerous cells causes organs to enlarge, bone marrow to be so impacted that it cannot produce red blood cells, lymph nodes to enlarge to the point that it impacts other organs of the body, and white blood cells increase exponentially in the bloodstream, since the malignant cells do not have the message to die.

Ibrutinib, which is the experimental drug I am taking at NIH, is an anti-cancer therapy that specifically targets an enzyme that is important to the growth of CLL. The enzyme is called Bruton’s tyrosine kinase (BTK). Ibrutinib “unhooks” the leukemia cells from the lymph nodes, bone marrow, and organs. The “unhooked” leukemia cells then flow into the blood stream causing a temporary increase in white blood count (WBC). Ibrutinib also gives the leukemic cells the message to die, so once the cells enter the blood, they essentially starve and die. An important thing to know is that unlike chemotherapy, Ibrutinib promotes the death of the malignant cells and does not harm healthy cells.

Today there is no knowledge of the long-term side effects of using the drug. Today there is no knowledge of when the drug stops working. But today for me, HOPE comes in the form of three blue capsules a day…

“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.”

― Robert Fulghum, All I Really Need to Know I Learned in Kindergarten

P.S.: Thank you Rocky and Liz for naming my granddaughter “Hope.”

BEGINNING CYCLE 6: I HAVE NOTHING TO COMPLAIN ABOUT

My “drug run” was successful. Just got back from National Institutes of Health (NIH) in Bethesda, Maryland at midnight. Couldn’t get a direct flight back to Phoenix, so I had to fly to Las Vegas and then wait for a connection to Phoenix. Never-the-less, it was worth it. The experimental drug Ibrutinib (PCI-32765) has caused my white blood count (WBC) to continue a downward trend to 53,000, which is the WBC I was at exactly two years ago. This is a very good thing. This makes me feel like I have been gifted those two years. One of my clinical brothers (Matt) has actually normalized, and his WBC is now in the high normal range. I am so happy for him.

I met more participants in the trial on Friday and we exchanged lots of information about our progress on the drug. Many of us don’t shake hands. Many of us have even moved past the Obama knuckle bumping. We decided for health reasons that we will do elbow bumping when we greet and leave each other. I – on the other hand – carry antibiotic gel with me, just in case I need to touch someone’s hand. I’ve still got my mother’s European need for human contact in me.

OUR COMPROMISED IMMUNE SYSTEMS

One of the clinical trial participants continues to have Immunoglobin infusions (IVIG), even when her numbers are above the recommended number to receive infusions, in order to prevent bouts of pneumonia. Her WBC is almost in the normal range and she has been taking Ibrutinib three months longer than me. Even though we have been getting positive results from Ibrutinib, our compromised immune systems will probably always be susceptible to viral and bacterial infections, so extra care must be taken so that a common cold does not transform into deadly pneumonia that lands us in the hospital.

Saline solutions and a room humidifier (Honeywell was recommended by a participant) are helpful to prevent the bloody noses and/or the breathing problems. No Neti Pots, according to some of the participants, because the nostrils are a direct passageway to the brain. Not using distilled water, or not properly cleaning the Neti Pot can cause death through brain infections. See

http://well.blogs.nytimes.com/2012/09/03/rare-infection-prompts-neti-pot-warning/

http://www.forbes.com/sites/daviddisalvo/2012/08/27/how-not-to-die-using-a-neti-pot/

DRUG COMPANY DISCUSSION

NIH had a discussion with the drug company, based on the ordeal we all went through with cancelled flights to the East Coast due to Hurricane Sandy. They gave us extra pills to tide us over in case of another weather crisis. We are all thrilled.

SIDE EFFECTS

My side effects this month have been nothing to write about. I have just noticed that it takes longer for me to heal from even a mild scratch. I still get slight stiffness or cramping in my hamstring muscles and my thumbs, especially if I am exposed to cold or hold a position too long. Because the drug often causes internal bleeding, I am not surprised that blood was found in my colon, so off to the colonoscopy doctor I go. What a pain in the butt! LOL.

I have gotten over my fear of needles and am no longer as ticklish as I have always been. When you are poked and prodded so many times, it becomes your new normal.

BLOOD TEST

• My morphology report indicates that I have giant thrombocytes (platelets). According to the experts, this could be fragments from the CLL cells, and should be of no concern.

• I also have a rare teardrop-shaped red blood cells, which is a technicality, and have more than likely been caused my the CLL cells.

• I have mild hypochromasia, which means I have a mild anemic condition due to a deficiency of hemoglobin in the red blood cells.

• My LDH is normal, which is great.

• My kidneys and liver are normal.

• My GP discovered that I am Vitamin D3 deficient, so I have increased my Vitamin D3.

• My local oncologist/hematologist continues to give me monthly B12 shots, since I was diagnosed B12 deficient when I first was diagnosed with leukemia.

AND IN SUMMARY

The research team met with me and were pleased that I wrote a letter to President Obama about the value of the NIH funding. NIH and this clinical trial has been my lifeline. So I have absolutely nothing to complain about.