One year on ibrutinib

Carl and I recently returned from NIH on the East Coast. The highlight is always being able to have dinner with my cousin Sam. This time we managed to also squeeze in a pancake breakfast. He works for NASA and has decided to retire in a year or two to Arizona. Sam, Carl, and I are very close, so it will be wonderful having more family close by. The three of us took some time to go to the Hungarian Festival for a little R&R. We saw George at the hotel (one of my blood brothers, who started the trial the same day). We missed seeing Matt. :-(

I cannot believe it has been a year since I entered the clinical trial with the experimental drug ibrutinib. My visit to NIH began with donating 17 viles of blood to Count Dracula, the lab technician. The good news is that my white blood count has decreased from 35,000 to a little over 29,000 (approximately 4,000 to 10,000 is normal). This is where I was five months after I was diagnosed. I am moving slowly, but headed in the right direction. I would be thrilled to be normalized.

I was then pumped full of radioactive juice so that my insides could be viewed by the medical team. My lymph nodes have not increased and I have remained the same since last January. This is also good news.

If you recall, last time I had a bone marrow biopsy I was wheeled off in a wheel chair. I could not walk due to the fact that I was stabbed five times with the Lidocaine, because my nerves kept feeling the needle. My bone marrow biopsy went better this time. Thank God for that one. I walked off the operating table on my own. I will not get the results of the bone marrow biopsy for several weeks. As soon as I do, I will post the results.

There are only a few side effects I reported.

1. The first is that the fatigue has returned the past few months. Rats! Sometimes the fatigue is more like complete exhaustion. Yesterday I took a 4.5 hour nap. I am hoping this will ease up. The medical team said they may have to take me off the drug for several months, if this continues. This freaks me out a little. I am keeping a journal for them.

2. The second side effect is my brittle nails. I have always worked with my hands, so I never had the luxury of having girlie–girl nails, so that is not a big thing for me. It is just a little annoying. The doctors suggested I take biotin.

3. The third side effect is sort of a silver lining one. My hair has changed texture. It used to be straight with no body. Now it has curl and body. I can’t wear a bob cut without using a flat iron! Amazing! Apparently, I am not the only one who has this side effect. I am not complaining about this one. LOL.

I have also signed up for another clinical study to help Dr. Richard Childs and Dr. Adrian Wiestner at NIH. This just involves donating my blood, bone marrow, tissue, etc. for further genetic research. This will help me get more scientific information to help me understand my situation.

I just got through reading Dr. Wiestner’s paper on the clinical study that was presented at a conference and found out that two people in our trial have died, but thankfully not from the experimental cancer treatment. Looks like they had problems with infections. I can’t let things like that get me down. I don’t have time to wallow in the mire and waste my time belly-aching.

My family and friends keep me excited about living. My son-in-law Steve is in Africa now and will be bringing home Ian, a new son. He just turned two years old and he is blind. I am excited about meeting him.

My son Rocky just completed another marathon in Portland. That makes two marathons in four weeks. Crazy! My daughter-in-law Elizabeth, who is five months pregnant, walked a total of eight miles to meet him at his milestones. What animals! It puts a smile on my face.

Love and Gratitude to my marathon runners and Man-of-the-Year

I need to take the time to send a ton of love and gratitude to three young men in my life: my son Rocky, and his childhood friends Tyler Breskin and Adrian Gastelum. They did a ton of fundraising for leukemia and lymphoma research the past few months. 

Rocky and Tyler ran the San Diego Rock’n’Roll Marathon on Team La Verne, and were third place and eleventh place respectively in the United States in fundraising. Rocky and Tyler dedicated their efforts in honor of me.

Adrian just got second place last night for Phoenix Man-of-the Year raising funding for research. Adrian dedicated his fundraising in honor of his brother, who died of leukemia, and me. Wonderful, wonderful men.

Tyler and Rocky at the finish line.

Adrian

MY LIFE since diagnosis

This is a concept map of my life since I was diagnosed with high-risk leukemia a few years ago. Each cancer patient faces emotional, physical, and financial tolls, as well as trying to cognitively put their hands around what is happening to their body and what can be done.  In my case, there were no real successful options, until I entered a clinical study.

I now have a cognitive understanding of the cancer. I am dealing with the physical and emotional toll. I believe the financial toll is manageable for now. After 2 1/2 years of weekly depreciating insurance interviews and filling out questionnaires and providing evidence of disease, I thought I could get on with my life. But now I have been randomly selected (LUCKY ME) to participate in another detailed insurance questionnaire about my medical condition. Here we go again...

And now I find out that the drug that is working for me will probably cost $150,000 per year... I am so happy I have a demented sense of humor!

                                                                   -- Dr. La Verne

Dr. Sharman's Post: How expensive are new drugs?

I just got through reading Dr. Sharman's blog post and wanted to share it with you. It is a continuation of my conversation about the out-of-control costs of cancer drugs. I will let his words speak to you...

http://www.cll-nhl.com/2013/05/how-expensive-are-new-drugs.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+DrSharmansCllNhlBlog+%28Dr.+Sharman%26%2339%3Bs+CLL+%26amp%3B+NHL+Blog%29

Paying to Survive: The Cost of Leukemia Drugs

My husband Carl and I have worked hard all of our lives. We both went to college, earned a living, raised a family, contributed to society, and hoped to leave the world a better place because we were here. Cancer reared its ugly head when we least expected it, and it took a financial and emotional toll on us. Becoming a proactive patient has helped me to personally deal with my diagnosis of 17p deleted leukemia.

As you all know, I have just completed nine months in a clinical trial with an experimental drug Ibrutinib, which will not cure the leukemia, but seems to be keeping it at bay, until a cure can be found. Hurrah! It looks like the FDA will approve of the drug in a year or so. This will be my lifeline and has changed my chances for survival. Hurrah! Now the next obstacle in our lives… How much am I going to have to pay to survive?

Here is a quote from the Blood Journal Report, which was prepublished April 25, 2013:

“Of the 12 drugs approved by the FDA for various cancer indications in 2012, 11 were priced above $100,000 per year. Cancer drug prices have almost doubled from a decade ago, from an average of $5,000 per month to more than $10,000 per month.”

If the cost of Ibrutinib follows in suit with today’s cost of Imatinib, more commonly known as Gleevac, which is a drug for chronic myeloid leukemia, the drug company will probably price it about $100,000 per year. Hmmm… My husband is retired. I am not working now. I don’t believe we have an extra $100,000 per year laying around to pay for my survival. I wonder if my insurance will help me pay for this? We are not alone in this situation. I guess we will cross that road when we get there.

All I can say is “Thank God for compassionate and sensible physicians.” Dr. Hagop Kantarjian from M.D. Anderson in Houston is taking the lead with a paper in the Blood Journal Report:

“The Price of Drugs for Chronic Myeloid Leukemia (CML); A Reflection of the Unsustainable Prices of Cancer Drugs: From the Perspective of a Large Group of CML Experts.”

Dr. Kantarjian states:

“As a group of more than 100 experts in chronic myeloid leukemia (CML), we draw attention to the high prices of cancer drugs, with the particular focus on the prices of approved tyrosine kinase inhibitors for the treatment of CML. This editorial addresses the multiple factors involved in cancer drug pricing, their impact on individual patients and healthcare policies, and argues for the need to lower the prices of cancer drugs to allow more patients to afford them and to maintain sound long-term healthcare policies.”

Blood Journal Report full article:

http://bloodjournal.hematologylibrary.org/content/early/2013/04/23/blood-2013-03-490003.full.pdf

The New York Times article, published April 25, 2013, states that physicians in more than 15 countries on more than five continents have joined together to suggest “… that charging high prices for a medicine needed to keep someone alive is profiteering, akin to jacking up the prices of essential goods after a natural disaster.”

New York Times full article

http://www.nytimes.com/2013/04/26/business/cancer-physicians-attack-high-drug-costs.html?_r=1

Stay tuned for the next adventure of “Dr. La Verne’s Awesome Adventure: Slaying the Leukemia Dragon.”

Dedicated to Dr. Mohammed Farooqui

This painting is on display at Banner Hospital for the next few months. When it is returned to me, I will give it to Dr. Farooqui as a gift of appreciation.

Novel Antibody Directed at Chronic Lymphocytic Leukemia

By Anna Azvolinsky, PhD¹ | April 3, 2013

¹Freelance Science Writer and Cancer Network Contributor.

Researchers have identified a novel monoclonal antibody directly targeted against a receptor found in abundance on chronic lymphocytic leukemia (CLL) cells, but not normal B cells. The humanized antibody can directly kill CLL cells, according to Thomas Kipps, MD, PhD, professor of medicine and deputy director for research at the University of California, San Diego Moores Cancer Center, and colleagues. The results of the study are published in the online edition of Proceedings of the National Academy of Sciences.

In contrast to normal B cells, CLL cells express a high level of CD44, a cell-surface glycoprotein receptor. CD44 is thought to mediate one of the important survival signals for leukemia cells. CLL cells receive survival signals from its tumor environment, including cells that are present in the lymph nodes and the bone marrow of CLL patients. Previous work from Kipps and colleagues has shown that CLL cells can undergo drug-induced or spontaneous cell death when removed from a patient and cultured in the laboratory. Because the RG7356 antibody induces cell death of the CLL cells by binding to CD44, the drug is a potential new therapy for treatment of at least a subset of CLL patients.