Monday, December 1, 2014

The Silver Lining of a Cancer Diagnosis

It has been said, "every cloud has a silver lining.” It is difficult to imagine how having a diagnosis of cancer could have a bright side.

But this is what cancer has taught and/or reinforced in me, so that I can continue to live a meaningful life:

1.    My life as I know it will never be the same. Even if I am one of the lucky ones, who finds myself in remission or cured, the perpetual cloud over my head may creep back into my life wondering if cancer will return. I am only human.

2.    Live one day at a time. I wake up each morning and I shout to myself, “Thank you God for this beautiful day!” It is important that I live in the here and now, because that allows me to live each moment, smell each flower, kiss the cheeks of my grandchildren, hug each friend, stroke my husband’s face, and find joy in just being. There is something so joyful about JUST BEING.

3.    Thoughts lead to actions. The cancer journey and treatments often cause apprehensive or fearful thoughts to enter my mind. I have to give the thoughts that enter my head a facelift. I yell, “STOP!” in my head. “I am going to be okay.” I have to avoid getting stuck in a self-fulfilling prophecy by acknowledging the apprehension, but doing the treatment or procedure anyway.

4.    Priorities may change. God, people, and relationships are my priorities. You learn who is and is not important in your life. Money is important for food, shelter, and basic necessities. Anything extra is icing on the cake.  It is a means to an end. It gives you freedom to travel, to explore your hobbies, to make your society better. You can’t take it with you. And all that “stuff” you have… You can’t take that with you either.

5.    Do what brings you joy. Art, writing, fishing, and healthy relationships give me joy.

6.    You suddenly see the big picture of your life. Yes, it is like a fast-forward film. Do you have regrets? Did you live your life with passion, gratitude and love? Would you rearrange your life? What would you change? Have you put off doing something because you thought you had so much time to do it later? What is holding you back from living the life you deserve?

7.    We need each other. As long as I know I am not alone in my journey, I can endure. That means that my medical team, my friends, my family, my online community, my church group, and my cancer support group are integral components of my living a meaningful life.

8.    Complementary treatments (reflexology, acupuncture, myofacial release, meditation, counseling, etc.) have helped me significantly manage chronic stress and coping strategies, and improve the quality of my life. Chronic stress can affect an already compromised immune system.

9.    And most importantly, I have learned to live my life with gratitude and love.

P.S.: The future of cancer care
Cancer care should not end when you are pronounced to be in remission or sent home after a series of radiation treatments. When someone undergoes orthopedic surgery or has a heart attack, there is a recognized rehab system in place to help with recovery for those survivors of injuries and serious illnesses. Oncologists do not usually offer cancer treatment aftercare services. Standard cancer treatments are extremely toxic and often cause physical and mental problems that hinder normal daily lives, such as fatigue, pain, cognitive impairment, sleep difficulties, anxiety and depression. The diagnosis of cancer alone can prompt these difficulties.

Investing in the rehabilitation of cancer patients may actually help them survive longer and enjoy a better quality of life. My hematologist/oncologist Dr. Robin Obenchain in Tempe, Arizona embraces the concept of a follow-up cancer care plan in her medical practice. She offers the services of a palliative care nurse Bonnie Morgan. Addressing the spiritual, mental, physical, and emotional health of the cancer patient in follow-up care honors the patient with dignity. Thank you, Dr. Robin.

Thursday, October 30, 2014

Stuck on Third Base

Dr. Brian Koffman refers to the current state of CLL/SLL medical research as being “stuck on third base” – almost there, but no home run yet. He is so right. A cure is around the corner and all of us patients are hopeful that it comes during our lifetime.

The last month has been very stressful for me. I have been fighting a respiratory infection and was off ibrutinib until I could get several heart tests and the results. Remember that a patient died in the trial because his heart stopped working. My NIH doctors wanted to be safe with me, since I had reported heart fluttering. If my heart is healthy, I will go back on the drug. If not, I will be on a Plan B – finding another clinical trial to help my leukemia.

My tests and appointments were scheduled. My last heart appointment had been moved from November 10th to November 7th. The most frustrating part was trying to move the tests and appointments up so that I would not be off the drug too long.

Then last Thursday I was contacted by NIH only to find that the clinical protocol had changed and that the drug company did not want any participants to be off the drug more than 28 days or they would be off the ibrutinib clinical trial. November 4th was my D-Day. I spent several hours on the phone talking to the scheduling desk, the GP scheduler, the cardiology scheduler, etc. and leaving email messages with cardiologists, administrative assistants, etc. I was willing to cancel my existing appointments and go to ANY doctor at ANY facility in the Valley as long as I could get the results by the deadline.

Finally, an appointment opened up for today – a day after my ECHO test and two days after my Holter Test. I was told by the scheduling desk that this day may not work since the analysis is done one to two-weeks after the tests. I put on my Dragon Lady hat and told the scheduler that this appointment will have to work, and the cardiologist will need to take only one day to review the results, and please plug my name in the slot. I then contacted the doctor’s administrative assistant and explained my dilemma. She said the doctor would be able to read the test in one day.

When I saw the technicians for the heart tests, I got their names and asked them to please make sure the doctor had the results by Wednesday evening, and that I would be calling if there was a problem. I thanked them profusely for making this happen. They also checked the notes the doctor wrote and his notes indicated that I needed the appointments in one to two weeks. Apparently the schedulers were not following the doctor’s orders because they scheduled me almost a month out.

Long story short:
My heart is healthy. I thanked the cardiologist with the biggest smile on my face. He even got a hug.

I am now stuck on third base again with ibrutinib and I am so grateful.  Everything in life is a matter of perception. Third base is certainly better than being struck out.

I did not follow Tom Hanks advice in his 1992 movie “A League of Their Own”, “There’s no crying in baseball!” I shed a few tears of joy on my drive home.

As a patient, I am forever grateful for the gift of borrowed time I have received through the use of ibrutinib as my kinase inhibitor of choice.

-- Dr. La Verne

Friday, October 10, 2014

27 months on ibrutinib


I just returned from the National Institutes of Health in Bethesda, MD. This is a recap of what happened.

I started the day by donating 17 vials of blood and blowing out one of my veins to the causes of three clinical trials: (1) ibrutinib trial, (2) flu trial, which tests the effectiveness of the shot on immune-compromised individuals, and (3) the platelet trial.

I had a sore throat when I arrived. After my vitals I went to the building lobby to wait for my appointments. I began to read my book, but I was really tired and closed my eyes to rest for a few minutes -- one of my “power naps” as my son calls it. I woke up two hours later. Thank goodness I didn’t sleep through my appointments. NIH nurses put me in a separate room with a bed and swabbed my throat and tested my nose mucus. I was diagnosed with the rhino and terra (spelling?) viruses. I was told to continue to wash my hands and stay away from any grandchildren with runny noses to avoid having the respiratory infection become pneumonia.

These are the side effects I reported:
• Toenails are getting progressively more brittle and my right big toe nail is separating from the nail bed on the right corner. My little toenail on the right foot is excessively thick. NIH will be taking photos of my nail on the next visit, since brittle nails seem to be a common complaint of ibrutinib users. Boy do I need a pedicure!
• Loose bowels have been a side effect that has taken over two years for me to get. Apparently, it is not an uncommon side effect.
• Fatigue is still there, but not as bad as before I went on ibrutinib.
• Heart fluttering in the morning when I wake up (for the past 3-4 weeks).

Other issues:
• Sharp pain in my right side under my rib cage when I make a sudden move or twist my body. This has been going on since 2008. Everyone presumed it was a hernia, so I just put up with it. When it happens I have to give pressure with my fingers and do my Lamaze childbirth breathing until it goes away. I went to the GI doctor and he said it did not look like a hernia and I have to go back to get another test – either exploratory surgery with a camera or another MRI.

The results of my blood tests:
• Hemoglobin, liver, kidney, and LDH are within the normal readings. Hurrah!
• Platelet count is low. Not good.
• Neutrophil count is high (probably due to respiratory infection)
• Uric acid is high. It was requested that I get another test in Arizona to make sure NIH testing equipment is reading this correctly. If it is high again I will begin taking allopurinol. Here is a bit of trivia: It is not just rich foods that cause uric acid to rise. Did you know that cauliflower, peas, and spinach are high in uric acid? Maybe I have been overdosing in veggies! LOL.
• White blood count rose from 11,000 to 12,380. Not good. This is the first time in over two years that I have not been moving in the right direction. Dr. Farooqui thinks the rise in my white blood count may be because of my respiratory infection. We will know more later.

Here is the big news:
Sorry that I am not following newsroom protocol by keeping the big news for last. In the last blog I wrote about the trial letter indicating that a participant in the trial died suddenly when his heart stopped. Apparently his symptom was the fluttering of the heart. Since I have had that symptom, I have temporarily been taken off the drug. I had an EKG, which came back normal. I am headed to the doctor in Arizona this morning for an ECHO test and a Holter monitor test. Only when Dr. Farooqui gets the results will he determine when I can continue using ibrutinib. If not, we are on to Plan B. I am confident that these tests will come back okay and I can blame the heart palpitations on the other stressors in my life. 

Friday, August 29, 2014

Good news, bad news, and life in the big city

It has taken me a good month to process the results of my bone marrow biopsy, my FISH test, the clinical trial letter I received, and information on the length of time ibrutinib works for 17p deleted folks. Sometimes I am intentionally slow at assimilating information because I need time to process it so that I do not panic.

Remember that at initial diagnosis and therapy, I had the 17p deletion. I was treatment naïve before being a participant in the ibrutinib trial. Patients have a 5 to 10 percent chance of having a 17p deletion at initial therapy, but the frequency increases to 20 to 25 percent in relapsed populations.

Let’s start out with the results of my tests from my two-year clinical trial checkup at the National Institutes of Health.

GOOD NEWS
• I still have evidence of leukemia in the flow cytometry; however, the presence of abnormal leukemic cells in my blood has been reduced since January 2014 from 86.4 percent to 59 percent. Slow, but continued improvement.

• There is no visible evidence of leukemia in my bone marrow, which is where the leukemic cells are produced. Ibrutinib works for 24 hours, which is why the pills must be taken every day. Apparently I am being a compliant patient.

• I am not in remission after two years on ibrutinib, but my white blood cell count is heading in the right direction.

• My myeloid and erythroid maturation is progressive. Translation: My white blood cells and my red blood cells are maturing. This is what we want to see, since I previously had many immature cells that never matured.

IBRUTINIB FAILURE RATE OF 17p DELETED PARTICIPANTS
Here are the facts I found in the latest research: The risk of failure on ibrutinib has been documented to be higher with patients having 17p deletion, and achieving a complete remission is significantly lower with the loss of chromosome 17.

Dr. Michael Keating also mentioned in his newsletter that a British clinical trial showed that patients with less than 20 percent of 17p deleted cells, experienced a more favorable treatment outcome compared to those with a higher percentage of abnormal cells. My numbers are way above those percentages; however, I hope to be an outlier.

So what do you do with these “bad” stats? I try to connect to others and find out possibilities. I have to keep reminding myself, "Remember that these are just statistics. It does not mean it has to be you."

One of the bloggers I follow is Dave Eckberg, M.D., who is a medical doctor and a Vietnam vet exposed to Agent Orange. He is my blood brother and has CLL/SLL and has developed 17p deletion.

I decided to read his blog from the beginning to end, and I came across a post from nine months ago that concerned me. Dr. Dave posted a blog about the ibrutinib failure rate in the 17p deletion patients after 30 to 48 months on the drug and was also concerned. And of course as I am reading it, I am thinking, “Oh, my! I am on month 25!”

So rather than let my imagination go wild, I contacted Dr. Dave to find out an update. He had an upcoming appointment this summer with Dr. Michael Keating, his CLL specialist in Houston at M.D. Anderson, and was going to ask him about the percentage of patients failing the drug. He was told 10 percent.

I also contacted another blood brother, Brian Koffman, M.D. He is a medical doctor and a CLL/SLL patient who has developed 17p deletion. He said that the majority of frontline (those who have ibrutinib as the first cancer treatment) 17p patients do great, but the success is not as high as those with relapsed disease. Progressive-free survival (PFS) is around 60 percent for 17p-deleted participants on ibrutinib at three years, according to recent research published.

Dr. Adrian Wiestner, my NIH physician, said because my treatment- naïve body has not been damaged by any prior toxic chemotherapy treatments, which destroy the healthy cells, he feels better about my survival chances.

The bottom line is that we don’t have the answers yet. Being a proactive patient, I have to prepare myself for the worst-case scenario. If ibrutinib fails me at some point, there are several clinical trials on the horizon with various therapies that could be my Plan B or Plan C. There is hope. In the future there will be options. Today the possibilities are so much better for those diagnosed with the poor prognosis than they were five years ago. So life is good.

ANOTHER BUMMER: THE CLINICAL TRIAL LETTER
Those involved in research understand that clinical trial researchers inform participants if there is a death that may be caused by the experimental drug. Participants are given a choice to voluntarily remain on the trial or leave. I received such a letter from the NIH.

Since February 2009, 6,000 human patients have been treated with ibrutinib in a commercial setting, and over 2,800 human patients clinical setting in a clinical setting. June 14, 2014 one of the NIH trial participants died suddenly from sudden cardiac death and all the clinical trial participants were notified. One of the side effects of taking the drug has been documented to be abnormal heart beats (atrial fibrillation). If any of us have had hypertension and arrhythmia in the past, we are to be particularly sensitive to any shortness of breath, rapid heartbeats, chest pain, dizziness, or lightheadedness, and we are to seek medical attention and notify NIH.

I had an EKG test performed and it came back normal. I had hypertension years ago, but a couple years prior to being admitted into the trial my blood pressure dropped to the point that I was taken off the blood pressure medicine. I have been taking my blood pressure on a daily basis. Some days it is higher than normal, but most readings are in the normal range.

I often deal with the “what-if” potential crisis by removing myself emotionally and putting on the hat of the researcher, or relying on my demented sense of humor. After reading the letter, I told my husband that the silver lining is that if I did die from sudden cardiac arrest, at least it will be a fast death, and that I better not leave the house without clean underwear. He did not think that was funny. LOL.

Tuesday, July 29, 2014

Happy Day! FDA approves Imbruvica!

Monday, July 28, 2014 was a wonderful day! Our granddaughter was over at our house having a sleepover. She was born a year after I was diagnosed with leukemia. My son and his wife named her “Hope” to give me hope.

A few days ago on July 25, 2014 the news came in that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) recommended ibrutinib (a.k.a. PCI-32765, brand name Imbruvica) for those with relapsed or refractory mantle cell lymphoma (MCL), CLL patients with one prior therapy, and [TRUMPETS, PLEASE] first-line use for those with 17p deletion or TP53 mutation who are not suitable for intravenous chemotherapy.

That was Europe. But in the U.S. the F.D.A. (U.S, Food and Drug Administration) approved the drug for MCL (November 2013), and those patients with prior CLL treatment (February 2014), but not for those with 17p deletion.

August 2009 I was diagnosed with CLL (a leukemia which is also a type of non-Hodgkin lymphoma) with deletion 17p (del17p) and TP53 mutation. Event though CLL is a chronic disease, I realized I had drawn the bad card… two to three years median predicted survival. The deletion and mutation status is linked with treatment-resistant and aggressive cancer. Loss of the key gene TP53 means the loss of triggering DNA repair or cell death in order to control the presence of abnormal tumors in the body.

Three years after diagnosis I was accepted in a clinical trial at the National Institutes of Health (NIH). Five years after diagnosis I am still here on this earth happily living on borrowed time. I really wanted other patients who did not get into a clinical trial to have the same blessings I have had.

Monday, July 28th Pat Elliott (a.k.a. CML social media queen) sent me the F.D.A. (U.S. Food and Drug Administration) news release that the FDA expanded the use of Imbruvica for those CLL patients who carry a deletion in chromosome 17. Good news, indeed. That means that all cancer patients with this diagnosis can be prescribed Imbruvica.

What a happy day!

Monday, July 14, 2014

GOOD NEWS! Two years on Ibrutinib

I just flew in from the National Institutes of Health. It is my two-year anniversary participating in the clinical trial with the oral cancer treatment ibrutinib (a.k.a. PCI-32765, Imbruvica). Ibrutinib targets Bruton’s tyrosine kinase (BTK), which is a protein that is necessary for CLL cancer cells to survive. The BTK protein was first identified by scientists four years ago. Ibrutinib is the first BTK inhibitor.
I have good news. Pharmacyclics (the manufacturer of the drug) has decided to increase the length of the NIH clinical trial for the 87 participants. It makes good sense to them to follow us and track our progress on ibrutinib. What this means is that as long as I am willing to fly to Bethesda, Maryland every three months, I will have access to the drug for as long as it continues to work on my body. I am really blessed.
On a personal level, my white blood count has improved since my last visit three months ago. The leukemia pill is not only slowing, but also reversing the cancer in my body. I still have not normalized, but I am getting closer. I am doing well. I am still alive, and that is a good thing. 
The majority of frontline patients treated with ibrutinib have done well. Studies are being conducted to see if ibrutinib is better than chemotherapy in the frontline setting. The longer a patient uses ibrutinib, the better the immune system appears to work. In the Ohio State clinical trials only 15 percent of about 250 participants have stopped using ibrutinib because they have become resistant to it.
RESISTANCE TO IBRUTINIB AND POSSIBILITIES
Ibrutinib binds to the BTK protein at Cysteine 481, which is a specific location. When a person becomes resistant, the clever cancer cell figures out a way to change the cysteine to serine, resulting in ibrutinib having a more difficult time binding to the protein and thereby shutting it down.

The cancer has progressed in more than half of the patients with 17p deletion, who have been treated with ibrutinib, so I count my blessings every day. The 17p deleted population still need new agents to use if they relapse on ibrutinib. A number of possibilities are in the works (See Figure 1).
Figure 1
I am also following the research of a new drug GDC-0853 developed by Genentech. It is being tested in a Phase I clinical trial in patients with relapsed or refractory B-cell Non-Hodgkin’s Lymphoma and Chronic Lymphocytic Leukemia. GDC-0853 is supposed to get around the Cysteine 481 protein mutation and still work as a BTK inhibitor. The recruiting locations of the clinical trial are California, Missouri, Ohio, Oregon, Tennessee, Washington, and Australia.

Gratitude & Love,
Dr. La Verne


Friday, July 4, 2014

My 15 truths about cancer -- Cells Behaving Badly

“And ye shall know the truth, and the truth shall make you free.”
(John 8:32)

So it is one of the worst days of your life. You have been diagnosed with the big “C” or someone you love has been diagnosed with cancer. These are my 15 truths (with a lowercase “t”) about what I have learned in my journey with leukemia. I hope it gives you a new paradigm shift.

First let me clarify what I mean by TRUTH. What is the difference between the truth (with a lowercase “t”) and the Truth (with a capital “T”)? The truth with a lowercase “t” is according to man. It is relative. It is subjective. The Truth with a capital “T” is according to God. It is absolute. It is unchanging and true in all situations.

My 15 truths:
1. Cancer will dramatically change your life for the worst or for the better (and sometimes both) depending on your perspective. There is a transformative effect of suffering from an illness at a time when everyone else is pursuing happiness that seems so unfair. Only you have the control of your attitude. Do not let cancer steal whatever life you have left.

2. Each person's journey is different. Most people carry precancerous cells in their body. These cells often do not grow into cancer, because they are kept in control by a number of mechanisms that keep them playing nicely with other cells. If the precancerous cells are so damaged that they cannot cooperate, they usually repair themselves or atrophy and die.
     It just takes one bad boy. It can happen to anyone. The miracle is that it does not happen more often. The cell that decides to become anti-social develops a pattern of bad behavior. He divides whenever he pleases instead of waiting for signals from other cells. Other cells become crowded out.  The bad boys move to places they should not be, develop their own mutations, and stop listening to signals that they must die.
     Each cancer is different depending upon a patient’s individual genome (body chemistry). That is why there are different responses to the same cancer treatment for the same cancer diagnosis.

3. You will reassess your priorities. A cancer diagnosis will make you realize what is really important in this life. For me it is the relationships in my life (both spiritual and personal), creating my art, my writing, and my small contribution to making the world a better place. Think about all the stuff (material and financial) you have been collecting all these years. You can’t take it with you.

4. You will see your own mortality. A cancer diagnosis will make you stare at God at close range. Having a diagnosis of cancer makes the reality of death more clear. This is inevitable. The reality is that our physical bodies are all going to die at some point. This is not something to be feared. We will just walk into another room. I believe our spirit lives on forever.

5. Learn to live in the here and now. It is amazing how it takes being diagnosed with cancer to make us embrace the beauty of today. We can clutch the past so tightly that we leave no room for today. Or we can live in the future of what ifs -- not realizing that tomorrow does not exist yet.

6. Family and friends that connect with you do it out of love and caring. These people become your support and the joys of your life. You will find out who really cares. Do not constantly barrage them with your illness. Do not let the cancer define you. It will wear them out. Remember that they have a life that deserves to be discussed and lived.

7. Do not surround yourself with toxic or selfish people. Avoid family members and friends like the plague who make you feel worse than you did before you communicated with them. Also understand that family members and friends who disconnect with you do it out of fear of their own mortality or because you are no longer useful to them. Forgive them and move on.

8. It is important to be a proactive patient and educate yourself. Research. Find support groups. Ask questions. Take control of your life! You will come to realize that physicians often have to rely on educated guesses because they do not know all the answers. We are just at the cusp of understanding cytogenetics and DNA.

9. GET A SECOND OPINION or third or fourth. Surround yourself with experts, not just generalists. Explore your options. What is the standard therapy? Is there a clinical trial you could participate in? What other possibilities are available for you?

10. Do not let statistics freak you out! When you read about statistics please understand that it is a mathematical science based on the number crunching of data. It does not mean YOU.  In order to have the numerical results, there is often the presence of outliers that do not fit into the sample mean. You may be an outlier.

11. Your body will change during treatment. You may have cognitive impairment from the treatment. You may have fatigue, pain, or limitations in your daily life. Take care of your body. Adjust to a new normal with no guilt.

12. Prepare to have psychological and social stressors that you should not ignore. Even if you are a well-grounded person you will have your moments. Your psychological wellness affects the health of your body. Be kind to yourself. Understand that the dark cloud may quietly hover over your head, even when you are in remission, because of the fear of the return of those bad boys.

13. Financial stress may become an unfortunate part of your life, which may include fighting with insurance companies or experiencing reduced employment or no income. Take care of your energy level so that you have enough energy left over to live as well as you can with the diagnosis.

14. Laugh when the spirit moves you. Laughter improves our well-being. Don’t take yourself or life too seriously. Remind yourself of funny moments in your life. Hang around people who make you laugh. Go to the Improv or to see comedies. Try to find humor in bad situations. I understand that sometimes life just sucks. But it helps me to find demented humor in the soap opera of life. LOL.

15. Wake up every morning full of love and gratitude. Meditate, pray, and count your blessings. Surround yourself with people and activities that make your life a joyful one. Don’t overlook the simple things in life that give you happiness – like a beautiful sunrise or a grandchild’s laughter or a puppy sitting on your feet.


So there you have it – my 15 truths about cancer. This is how I personally have been able to not only survive on my journey, but also joyfully live.