Saturday, October 15, 2016
I recently returned from a visit with the Pharmacyclics folks in Sunnyvale, California.
Here I am with Wulff-Erik ("Erik") von Borcke, the President, and posing with the painting that I was commissioned to paint for their lobby "A Piece of my Heart (Part 2)."
I met with Erik for about 40 minutes and then he interviewed me in front of a crowd of about 300-400 employees for about an hour. Ibrutinib is one of their cancer drugs, so we discussed my cancer journey. What a remarkable experience for me. The employees wanted to put a human face with the drug they are manufacturing. In the audience was a recent grad of the Computer Graphics Technology Department at Purdue University, where I taught, researched and wrote grants. Small world; isn't it?
I just returned from the National Institutes of Health in Bethesda, Maryland with a medical update. After four years and three months on ibrutinib, my blood work remains good, specifically my white blood count, which is still in the normal range (8.3K).
I had the opportunity to meet two patients on the ACP-196 clinical trial, and met Nancy, a retired school teacher from Houston, who is in the same leg of the ibrutinib trial as I am, and still doing well. My blood brother George is still alive and kickin’ on ibrutinib. He started the trial the same day as me.
However, as of Thursday, Oct. 13, 2016, 17 participants in my clinical study with ibrutinib have relapsed after four to four and a half years on the drug. Most were 17pDEL, some were complex karyotypes, and all received prior treatment before ibrutinib. If ibrutinib is a frontline treatment for you (as it was for me), it may work in your favor, according to Dr. Ahn Inhye.
The good news is that there are lots of options now if you relapse that were not available when I was originally diagnosed August 2009. Clinical trials with venetoclax (an Abbvie drug) have shown amazing results. Trials combining ibrutinib and venetoclax have resulted in some MR negative results, which are associated with long-term survival. Minimal residual disease (MRD) is when a person is in remission, but there are still a small trace of leukemic cells from the bone marrow that remain, even though the patient shows no sign of disease. That’s me. It’s those little boogers that can cause a relapse.
I have another unrelated issue I am taking care of that has to do with my immune system. My GP said that recent bloodwork indicated I tested positive in three blood tests: (1) anti-nuclear antibody (ANA) test, (2) rheumatoid arthritis (RA) test, and Sjogren Syndrome. The important thing to remember is that any of these tests can be a false positive, so I will not worry about it until I find out otherwise.
The ANA test reveals the abnormality of autoantibodies attacking the body’s own cells, which may indicate the diagnosis of lupus. Further testing is needed. The RA test checks for autoimmune disease of the joints. I have an appointment with a specialist in December. Sjogren Syndrome is an inflammatory disease affecting the immune system and tear and salivary glands – hence dry eyes and dry mouth issues.
So now I am trying to get my short-term memory cells to communicate with each other, because I am performing in two stand-up comedy routines next weekend. As the Alive & Kickin’ (A&K Sisters), my stand-up partner Diane Miner and I will be opening for the Decoding Annie Parker movie and book signing in Scottsdale on Saturday. It is about the discovery of the breast cancer gene.
On Sunday in Tempe I will be doing a stand-up comedy act as MaMa La Verne at the IMPROV, along with other comics, to benefit the Leukemia & Lymphoma Society.
So there it is. Life is unexpected and concerning, yet joyful. Hope is the word: Spread the laughter, heal the soul.
In the end what matters most is how well you lived,
how well you loved,
how well you learned to let go,
how much you laughed
and how hard you kicked cancer’s ass!
Saturday, July 30, 2016
Mountain Winery, Saratoga, California
LLS donor development friends:
Gail Sperling, Carson Jacobi, Sharon Ladin, and me
What an incredible past few weeks it has been!
I flew to a vineyard in northern California to talk to some pharma sales reps about oral cancer drugs. It was important for them to talk to a real live human who is alive because of the novel cancer treatments they are selling to medical doctors. They had lots of questions. I looked in the audience and saw such wonderful smiles. They filled my bucket, as my granddaughter says.
Then my husband Carl and I flew to Bethesda, Maryland for my medical testing and I met my new doctor. More about that in a minute.
Then we had out-of-town family/friends fly in from Santa Barbara and Houston to celebrate my daughter-in-law’s birthday. Yes, you heard me right. They flew into Phoenix during our heat wave. I told them it was like flying into Toronto, Canada during a snow blizzard. They must love us a lot. LOL.
Then I gave a talk to the national Leukemia & Lymphoma Society (LLS) donor development staff at the Renaissance Hotel in Phoenix. My talk was about my diagnosis, how I got involved with LLS, how LLS helped me, and my message to donors. I threw in some of my stand-up comedy, which was unexpected to them. I got a standing ovation. I was deeply touched.
So getting back to my leukemia update:
I met Dr. Ahn Inhye again at NIH. She is now the doctor I will see when I go to NIH for testing. I met her originally at the beginning of my clinical trial journey. She is short like me and Asian and I could actually look her in the eye. LOL.
Two years ago (July 2014) medical tests indicated that I had 23% leukemic cells in my blood. One year later (July 2015) I had 3.8% leukemic cells in my blood. I was thrilled to know that this visit to the NIH I did not have to have a bone marrow biopsy, because the one I had July 2015 showed a normal bone marrow biopsy. I was hoping that my flow cytometry test would come back showing I had reached MRD (minimal residual disease) negative. MRD negative disease in CLL is not “no disease” but an incredibly low level that is below the detection cut-off of 0.01%.
The flow cytometry test results came back a week after I got back to Arizona indicating 3.2% leukemia B-cells in my blood. Good results, but not the kind of results that would have “knocked my socks off,” that I say to my students.
I wondered if anyone in the clinical study had reached MRD negativity. I found out there were two participants. The majority of participants did not reach MRD negativity, but continue to respond on low level of detectable disease. So this is my case. The doctor considers 3.2% a low burden of disease, and interprets this result as a very good response since I have been on IMBRUVICA (a.k.a. ibrutinib, PCI-32765) for four years now.
Happiness doesn’t come as a result of getting something we don’t have, but rather of recognizing and being grateful for what we do have.
Thursday, July 7, 2016
L: Mary Catherine Moffett, MIDDLE: me, R: Thea Zajac
Monday, June 27, 2016 I had the pleasure of meeting with Mary Catherine Moffett, Advocacy Director of the national Leukemia & Lymphoma Society (LLS), and Thea Zajac, LLS Director of Government Affairs. The discussion focused on Medicare cancer patients’ access to oral cancer drugs.
Members of the national LLS and I are going to share stories of Medicare and non-Medicare patients who received access to oral cancer drugs through their insurance and others who have not with U.S. Congress members.
Please email your stories to me at DrLVHarris@gmail.com and use the subject line: ORAL CANCER DRUG ADVOCACY. I have a September 1 deadline. These stories will be sent to Washington, DC.
Please include the following in your e-mail stories:
• Name, age, gender
• Name of cancer
• Are you on Medicare? If not, what insurance?
• What is your prescription insurance? Secondary insurance?
• Have you tried to get your oral cancer drug covered by your insurance company? What is your co-pay? Is it affordable to you?
• What is your experience? How is this financial burden changed the quality of your life?
It is remarkable all the breakthrough cancer treatments that have been FDA-approved and tested in clinical trials for leukemia and lymphoma patients the past several years. That is what medical innovation is all about. My hat goes off to all those dedicated medical researchers, who persevere and do not give up on finding a cure. I am also forever grateful to the stakeholders and organizations providing funds to make these innovations possible.
Love and gratitude from the lab rat – me. As many of you know, I am here only because I became B22 in a clinical trial with an experimental drug for patients with a very poor prognosis. So the oral cancer drug is working and I have access to it through my clinical trial, because I am being observed for any long-term effects. Originally I was supposed to have access to the drug as long as it worked for me -- until I relapsed. I breathed a big sigh of relief. That is, until last April when I had to sign a revised contract stating that at any time without any reason I could be pulled from the study. Be still my heart… on to Plan B and Plan C.
But before I do, let me explain the costs of newly FDA-approved drugs. Many are $100 a pill and if a patient is prescribed three a day… You get the picture… over $100,000 a year -- $109,500 to be precise. Because of the poor prognosis cancer diagnosis, and having to search the United States for a cancer expert, I had to leave my university career before I was able to qualify for retirement benefits.
The Leukemia & Lymphoma Society (LLS) has been instrumental in pushing legislation through the states for affordable access to oral cancer treatment by promoting that insurance plans not require patients to pay more out-of-pocket for cancer medications based on how those drugs are administered. As of today, 40 states and DC have passed these state laws. Many of the drug companies are generous in their ability to help subsidize the cost of expensive Tier 1 drugs for patients with insurance other than Medicare.
So Medicare has become an insurance challenge. It is a federal program. And unfortunately, the majority of leukemia and lymphoma patients are on Medicare.
Two years ago, a number of us from Arizona’s LLS met seven members of Congress face-to-face to discuss passing a bill so that oral cancer treatment would be treated the same as intravenous cancer treatment. Why shouldn’t it be? After all, cancer treatment is cancer treatment. LLS hired a research firm to confirm that the medical costs of treating a patient on an oral cancer drug as opposed to one who did not have access and became ill is about $2 more. The lobbyists backed away and the bill had no one opposing it. We encouraged the lawmakers to sponsor the bill and get it through Congress since it had no opponents. The bill just sat there gathering dust.
Today there is a bill in Congress that expires in December. It is called the Medicare Part D Beneficiary Appeals Fairness Act (HR2624 and it’s Senate companion S1488). It allows a cancer patient to negotiate a Top Tier drug to be more affordable. It is not exactly what I wanted, but it is a start. It is sponsored by Senator Bill Nelson (FLA). Kudos to Rep. Raul Grijalva (Arizona District 3) for being the only Arizona co-sponsor. LLS is going to re-introduce the bill to Congress in January. All I hope is that cancer patients in the future will be able to benefit from this, and that politicians remember that they work for us.
So here is one of our plans. Several of us at LLS are going to have to pound the pavement AGAIN and begin in Arizona to get the ears of Senators Jeff Flake and John McCain, and Representatives, such as Ann Kirkpatrick (Az-1) and Kirsten Synema (Az-9).
I am in contact with several national insurance assistance experts and will be reporting on what I find out that benefits Medicare patients, who will be or are presently taking oral cancer drugs. That will be another blog.
We need your stories in order to get this bill through the system. Let’s “get’er done!”
Thursday, June 30, 2016
Wednesday, June 29, 2016 I participated in a virtual town hall meeting sponsored by the Leukemia & Lymphoma Society as a part of the National Moonshot Cancer Initiative led by Vice President Joe Biden. I joined about 500 people across the country. This is just the beginning of the conversation.
I am eternally grateful for advancing the cures to end cancer. I am here today because of those dedicated scientists and medical researchers who persistently experimented and are keeping the cancer in my body at bay with three blue pills a day.
I have, however, some deep concerns about drug parity and access for Medicare cancer patients. Here is my mantra: If breakthrough drugs are not accessible to patients because the costs are out of range, it is a tragic situation. My drug costs $10,000 a month. It is keeping me alive. I have access to it through my clinical trial. When I am no longer in the trial, I will not have access to it, because I will not be able to afford the cost, because I will be on Medicare. What then?
Vice President Biden did mention the barriers to access breakthrough cancer drugs, such as the high out-of-pocket costs, but it was not addressed in depth. I have to keep telling myself, “Be patient, La Verne. It all takes time. But that is my frustration. How much time is this going to take? How many patients will die because they do not have access to their cancer drugs because of the financial burden?” This is when I do my tai chi and meditation and just breathe.
I always try to have a Plan A and a Plan B and sometimes a Plan C. Today I will not try to get ahead of myself. LOL. I will unveil a strategic plan and what LLS and I are going to do about cancer drug access in my next blog. Now to the summary of the virtual town meeting…
SUMMARY OF VIRTUAL TOWN HALL
I enjoyed listening to the excerpt of VP Biden’s speech. He said that in the year 2025 there will be 20 million new cases of cancer and 11.5 million deaths, if we don’t realize the urgency of finding cures for the 200 distinct types of cancer. His core mission is to double the pace of medical research progress in five years.
Brian Connell,* Senior Director, LLS Federal Affairs, mentioned that it is important to get the medical research findings out in the public as soon as possible so that “no one works in a vacuum.” He encouraged the interdisciplinary approach to cancer research and breaking down the communication barriers between not only researchers, but also others involved in clinical trials (i.e. data processors) in order to bring the best treatment to every patient.
Lee Greenberger, Ph.D.** spoke about clinical trials and access, as well as collaboration. The LLS website has the LLS Information Resource Center available for patients. He also discussed Dana Farber/Blood Cancer Research Partnership.
Greenberger said that hematologists and oncologists need to be brought together to further research. A new project in Oregon called Beat AML is underway, because AML (acute myeloid leukemia) is a major problem. There have been no new drugs for that poor-prognosis cancer in the last 30 years. The Therapy Acceleration Program originated by Dr. Louis J. DeGennaro, LLS President and CEO, now has 45 partnerships with biotechnology companies, universities, etc. Another collaborative effort is realized through a specialized Center of Research Grants that has been formed.
Three 2016 goals were listed. The first 2016 goal is to reform the government’s clinical trial website (www.clinicaltrials.gov, so that patients have better access to clinical trials. The National Cancer Institute (NCI) site has a preview of the proposed navigation. The second goal for 2016 is breaking down silos at the FDA. An oncology center of excellence is being formed to streamline medical research information. The third 2016 goal is to increase medical research funding at the National Institutes of Health by $2 billion.
I also got to hear the story of my blood brother Doug Olson,*** a CLL survivor, who was Patient #2 in the Car-T 19 therapy at the University of Pennsylvania with Drs. June and Porter. We met two years ago in D.C. and I got to talk to him face-to-face about his gift of life.
There was not enough time to take many questions. One question was to define leukapheresis (a laboratory procedure in which white blood cells are separated from a sample of blood) and one question was about how to decide to participate in a clinical trial.
*Brian Connell joined the LLs in 2014 to take the lead in the federal legislative activities in support of the LLS mission to find cures and ensure patient access. As Legislative Director for Congressman Brad Ellsworth of Indiana, Connell was an advisor on health care issues. He also led the government relations team at the Medical Imaging & Technology Alliance (MITA). This is a trade association with the mission of increasing access to medical imaging and radiation therapy technology.
** Lee Greenberger, Ph.D.
Greenberger holds a bachelor's degree from the University of Rochester and a Ph.D. from Emory University. He has done post-doctoral work at Columbia University and was on faculty at the Albert Einstein College of Medicine. Greenberger has published more than 85 publications, mostly focused on oncology, during his research career.
***Doug Olson, Ph.D., Patient
Doug Olson received his bachelor’s degree in Chemistry from Maryville College and his Ph.D. in Medicinal Chemistry from Purdue University. Most of Doug’s career has been spent in the Medical Device and In Vitro Diagnostics industry. Doug served as President of DPC’s Instrument Systems Division and corporate Chief Scientific Officer prior to its sale to Siemens Health Care. Doug is the holder of eight U.S. patents and author of a number of publications. Doug is a cancer survivor and patient number two in the initial CART 19 clinical trial. He is on the Board of Directors of the Eastern Pennsylvania LLS chapter, BÜHLMANN Laboratories and BUHLMANN Diagnostics Corp and currently serves as Chief Operating Officer of BUHLMANN Diagnostics Corp.
Friday, June 10, 2016
Ten of us performed on stage and told our stories of cancer survivorship -- our 2nd Act.
Here is the YouTube link: (10 minutes)
Here is the YouTube link: (10 minutes)
Wednesday, May 4, 2016
I was once called the EverReady Bunny.
That was B.C. (before cancer).
I am now the Velveteen Rabbit.
My life is now filled with things that bring me joy: painting, writing, tai chi, my husband Carl, my children, my friends, my grandbabies, being a patient advocate, a political activist, and dabbling in comedy.
comedy (def.) = a performance, play, movie, novel, etc., in which the central motif is the triumph over adverse circumstances that is meant to make people laugh
So how did I go from being a serious university professor and researcher to dabbling in stand-up comedy as MaMa La Verne? Well the answer is simple. You either laugh at your horrific situation and find humor in it … or you spend your time crying your eyes out. – not to say I haven’t done both. The truth is that cancer patients need the laughter because humor is therapeutic. It replenishes our souls and helps keep the love and gratitude in our lives.
Trying stand-up comedy was on my bucket list as soon as I reached remission. I needed to laugh, so I decided I would take a joke writing class at our local Tempe Center for the Arts with comedian Tony Vicich. Then I took a stand-up comedy delivery class from Tony. I performed three times as MaMa La Verne. I truly do not deserve to be called a stand-up comic. I am a stand-up dabbler. My goal is to use humor as a therapy for cancer patients. My greatest joy with comedy has been to see others learn to laugh at life.
Then one day one of my aspiring comedian friends Diane confided in me that she had been diagnosed with a blood cancer and was going through the medical tests. I guess it is no longer a secret. LOL. I looked at her and said, “We are going to put together a comedy duet and perform for cancer patients. We can say things to them that only cancer patients can say to each other, because we have a demented sense of humor. She chuckled. My brain started clicking away …
Hmmm. So I thought I would lose my hair during treatment, but my hair turned from straight to wavy for two years. It was my husband who lost his hair. (LOL)
So Monday Diane and I are meeting at the local U.S. Egg for a think tank session. It will be therapeutic.
LIFE ACCORDING TO MAMA La VERNE:
I have 10 life lessons to share.
1. Attitude counts
It is the only thing you can control in your life.
I often get asked if a positive attitude helps in the length of time one survives when battling cancer. A scientific study found that positive patients do not necessarily live longer than grouchy ones, but the people they live with have a better quality of life. (LOL)
2. Live well and choose to be happy.
Don’t just survive. We are more than cancer survivors.
Surviving has nothing to do with being happy.
Survival is on the lowest level of Maslow’s Pyramid.
Choose to be happy.
Do not be a victim. Do not let cancer define you.
I am not the Cancer Lady. I am La Verne, who happens to be battling a thing called cancer. And for Halloween I am going to dress up as a lab rat.
3. Show gratitude and love.
“Gratitude is the sign of noble souls.” – Aesop
Practice gratitude and love every day because it is an antidote for taking people for granted.
4. Laugh or smile every day
If gratitude is the antidote for taking people for granted, then laughter is the antidote for turning a diagnosis of cancer into a triumphant life.
Laughter has many benefits – physically, mentally, and gives people an overall sense of well-being.
One scientific study found the use of humor leads to an increase in pain tolerance, because it releases endorphins that help control pain and decreases stress hormones.
Now my brain is clicking away again …. So I try to laugh or smile every day because I know that when I die, I am going to heaven. I have thought about going to heaven for the climate and to hell for the company.
6. Live today
People who live in the future are often anxious because they worry about things that haven’t happened yet. Living in the past becomes a problem because it robs you of the opportunity to enjoy the present. It allows you to avoid dealing with issues in the present.
7. Simplify your life.
There is a silver lining to having cancer.
I used to have a difficult time telling people, “No.”
Now I just say, “I have cancer,” and they don’t ask me to do anything. I should have used that excuse years ago. LOL
8. Avoid toxic people
Surround yourself with people and things that bring you joy.
During my journey to remission in my clinical trial some insensitive people would ask me, “Are you sure you really have cancer? You don’t look sick.”
I guess that’s why they call blood cancer the invisible disease. If you have it, you want the person who asks you those types of questions to disappear.
9. Form a support system
It’s important not to do this cancer journey by yourself. Friends are important. They are like bras. Keep them close to your heart and here for support. (LOL)
10. Let go, but do not give your power away to cancer.
Living with cancer is a constant dance between holding on and letting go. Meditate. Do Tai Chi or yoga. Listen to music, Paint. Write poetry. Run. Dance. Whatever helps you to center yourself.
In the end what matters most is how well you lived, how well you loved, how well you learned to let go, and how much you laughed.