Saturday, September 30, 2017

A Tribute to Caregivers

Dear Caregivers:

When I was diagnosed with cancer, my focus was on my health and finding a way of getting better and improving my chances of survival. It was not until I attended a cancer support group and a caregiver gave his testimony that it dawned on me how stressful it was taking on the role of caring for someone you love. The first thing that went through my mind was that I better be kinder to my husband Carl, because dealing with this whole cancer thing is as stressful on him as it is on me. So it is with gratitude and love that I dedicate this letter to the cancer caregivers, who often go about their business unnoticed and unappreciated.
I interviewed a number of caregivers. For their privacy I am only using first names. During the conversations several themes seem to emerge:
#1: You can’t fix it.
#2: You can’t do it alone.
#3: Adjust your thinking.
#4: Take care of yourself.

#1: You can’t fix it.
You can’t cure cancer. And according to Mayo Clinic (, March 7, 2015), if you are like 80 percent of caregivers, you are also not a health care professional.
“I am not a doctor or a nurse, so I worry if I am doing everything I am supposed to be doing,” Laura sighed. “I struggle with guilt,” she said. “When my mother needed palliative care, a trained register nurse (RN) demonstrated how to administer medication through an IV. She showed me one time and then I was expected to do it myself!”
It is discouraging for a caregiver when all your efforts result in no improvement for the patient. You may feel powerless.
Set up realistic goals for you and your loved one. Perhaps you could find an activity you can enjoy together. My friend Addie took her sister to a weekly chair yoga class, so they could have a positive activity that they could share and also not be so isolated. As a patient, I took up tai chi for balance and meditation. This activity would be very helpful to share with a caregiver to calm the mind. One caregiver read to his wife every day in the lobby of their apartment by the fireplace. It was a beautiful bonding experience.
So if you can’t fix it, focus on what you can do. You are providing comfort, love and safety for your loved one.

#2: You can’t do it alone.
Accept help. There is no room for Superman or Wonder Woman in the caregiver arena. Human beings need a balance of joy and hope in their lives when caring for a loved one. Caregivers need both physical and emotional help.
Each person brings a special gift to the patient. Spread the responsibilities of caregiving by dividing up the tasks. Some people have the gift of finance, taking care of bills or dealing with the insurance companies. Some people love to sit with the patient and either chat or quietly watch a movie or read a book out loud. Driving to doctor visits, fixing meals and running errands like grocery shopping are gifts others can provide. Appoint someone to check-in for updates and coordinate with others to keep the communication open.
Let go of some control, because no one wants to help someone who delegates a task and then micromanages it. Know when you have to ask for help and where your resources are. 

#3: Adjust your thinking.
A crisis can bring out the best or the worst in human beings. You may feel stuck in a thankless role. The stress of not having your time and knowledge valued, leads to feeling unappreciated. “It happens in every family,” Robbie responded. The problem is expectations. “Sometimes no matter what you do, it is wrong,” Addie remarked. “Family members are eager to offer advice, but the caregiver is stuck in the middle between the patient and the other family members. Even when you are trying to respect others’ wishes, there is a fine line you have to walk,” Laura stated. Know you have done your best and have no regrets. Focus on what you can control and know that you can control how you react to problems.
Work on learning to accept others’ limitations, including the limitations of the patient. People can’t give you what they are incapable of giving – either because they are engulfed in pain or illness or because they can’t step back and see the big picture and the role you are playing. It is not personal.
This is when you have to appreciate yourself, give yourself internal validation, and pat yourself on the back. Celebrate the little things in life. Remind yourself every day of what you are doing for your loved one to make a positive difference in their life. Make a list, if you have to and read it every morning. Knowing you are doing your best and doing the right thing is a huge reward and testament to demonstrating your love.
Be open and listen to others, share expectations, readjust your inner dialogue, be more assertive, be more grateful, show compassion for those who often make your life miserable, and work on positive relationships. Of course this is easier said than done, but it is a healthy direction. Remember, it is a difficult time for everyone.
Don’t ignore your emotional states of anger, loneliness, sadness, frustration and exhaustion. Seek counseling if you need.
Talking to a friend or trusted family member or joining a caregiver support group – either face-to-face or an online listserv or facebook group is also helpful. “There is no right or wrong, but caregivers just want to have their feelings understood,” Yvonne said. That is why it is so important to have a sounding board to vent. The curious thing is that truly “women are from Venus and men are from Mars,” Sue chuckled. “Often they are wired differently. Some only want to vent. Others want to solve the problem.”

#4: Take care of yourself and avoid caregiver burnout.
Even the most resilient human being can be stressed when caring for a loved one. It is important to preserve your own well-being. Too much consistent stress can harm your own health.
If you do not take care of yourself and you do not seek help, you may feel like the demands are so great that you are losing control. Here are some signs of burnout:
• Is your anxiety increasing?
• Is your sleep being so disrupted that you are fatigued during the day because of lack of sleep? Do you feel exhausted, have no energy and feel hopeless?
• Are you feeling increasingly impatient and irritable at even the slightest issues?
• Are you overreacting?
• Are you feeling resentful of the responsibility in which you have committed? Are you finding little satisfaction with your caregiving role?
• Do you find yourself neglecting some of your responsibilities?
• Are you finding that you are not taking time out for yourself and taking a break from caregiving?
• Is your own health suffering from your role as a caregiver? Are you getting sick more often?
• Are you neglecting yourself because you don’t care anymore or you are too busy? Are your bad habits (i.e. unhealthy eating, smoking, drinking) increasing?
• Are you neglecting your own personal relationships?
• Are you having difficulty focusing?
These are some ideas of what you can do to prevent caregiver burnout:
Give yourself a break from caregiving by having someone else help. Indulge yourself. Have a manicure, a massage or a bath with candles. Watch a comedy show or movie or read a book that makes you laugh. Escape outdoors and get some fresh air. Go for a quiet hike or go to the zoo or the botanical gardens.
Take care of your own health. Set up a doctor visit for yourself to monitor your own personal health issues. Exercise even if it is only 10 to 15 minutes at a time. Walk , cycle or just stretch your body. Pray, meditate or do guided visualization 10 to 15 minutes daily. Nap when your loved one naps. Eat healthy and hydrate with at least eight glasses of water a day. Invest in having a biofeedback treatment to teach your body and mind to respond to stress in a healthy way.

Being a caregiver of someone you love is a long-term challenge, but it can be rewarding because it is a way to show your love for the person. Accept that you can’t fix it, you can’t do it alone, you may need to adjust your thinking, and it is important to take care of yourself or you are of no value to anyone. You as a caregiver are doing a thankless, yet very important job. Live in the here and now. Remember that today is all we have. As a cancer patient, I send you my personal gratitude and love.

— Dr. La Verne

Dr. La Verne Abe Harris was a tenured Associate Professor at Purdue University in Computer Graphics Technology and the director of the Idea Laboratory, a creative thinking, interactive media, and animation research and development laboratory. Prior to that she was an Assistant Professor at Arizona State University (ASU). She received her PhD from the University of Arizona and her Master’s and bachelor’s degrees from ASU.
Before coming to ASU, Dr. Harris was the owner and creative director of Harris Studio, the art director of The Phoenix Gazette, the computer graphics production manager of Phoenix Newspapers, Inc., an editorial illustrator for the Arizona Republic, and the art director of an advertising agency.
That was B.C. – before cancer. She left Purdue University at the height of her career when she was diagnosed with a very poor prognosis of CLL: 17p deletion, TP53 mutation. She was the recipient of the ugly side of a common cancer. Diagnosed in 2009 she was chemo-resistant, had less than a 1% chance for a bone donor match, and could not find a clinical trial in which she qualified at that time. She is alive today because of an experimental drug (PCI-32765, scientifically known as ibrutinib, and branded as IMBRUVICA) that is now FDA-approved.
Today she is a cancer survivor, artist, patient advocate, political activist, blogger (, and occasionally a stand-up comedian for cancer patients.
In January 2018 she will officially be a Clinical Professor at Arizona State University (ASU). And life goes on…
Originally published in The CLL Tribune Q3 2017.

Monday, July 17, 2017

My 5-Year Anniversary on ibrutinib (IMBRUVICA)

My gift to Dr. Adrian Wiestner
Pharmacyclics had a cancer run
and used a copy of my painting on the back of the t-shirts.

NIH does medicine the way it is supposed to be done. It is patient-centered. I am happy to report that I feel as good as I did before I was diagnosed with cancer in 2009, except a little older. LOL. That is why I have decided to accept Arizona State University’s offer as a Clinical Professor. I will work with graduate students and seniors. I have missed them. I asked for part-time, because I have so many other things in my life to do.

My reported side effects:
No fatigue the past six months (other than age related).
No muscle cramping the past six months (after 4 ½ years).
Knee inflammation improving. I am cycling, stretching, and doing light resistance training. Sitting for more than one hour is not good for my knees. I have osteoarthritis. I need to stand and stretch periodically or I will pay for it.
My nails are still brittle. This is the last side effect left. I think I can live with it.

Every time I visit NIH for my medical tests, I learn something new. My blood brother George St. Claire and I were discussing auditing an intro to genetics class to help us better understand what is going on with our bodies. I call George my blood brother because we met each other as we were being wheeled into surgery on our gurneys, while his brother and my husband Carl looked on.

This visit I was honored to spend with Adrian Wiestner, M.D., Ph.D. He is not only a brilliant researcher, but a fine human being as well. Dr. Wiestner graduated from the University of Basel, Switzerland. He is a world-known, well-published medical researcher and the Senior Investigator in the Laboratory of Lymphoid Malignancies in NIH.

This time at NIH I learned:
• Normal B-cells do not come back in the normal range when a patient is on imbruvica. They do not

mature enough in the bone marrow. The body then produces more T-cells to help combat infections. I found this out when I asked about the B-cell low range (2) on the CD19# which is supposed to range (61-321/uL).

• Stopping the kinase inhibitor
Dr. Adrian Wiestner says that he does not believe patients on ibrutinib alone can have a durable lengthy remission when taken off ibrutinib.
As I mentioned in previous posts, select patients taking ibrutinib and venetoclax are minimal residual disease (MRD) negative and have been taken off the drugs. How long the remission lasts remains to be seen.

Three things may happen if a patient stops the drug after a complete remission is attained:
1.    CLL progresses
2.    Complete remission remains
3.    Normal B-cells grow back (This remains to be verified)

Researchers are studying Chronic Myeloid Leukemia (CML) patients taking gleevac who stop taking the drug. About half who have stopped have continued with a durable complete remission (

• Blood test
Dr. Wiestner is happy about my immunoglobin (lg) numbers. These are blood antibodies that help fight infections. They are within the normal range.

My WBC is 8.93 and my absolute lymphocyte number is 1.54 – all good.

My uric acid is slightly above normal but of no concern. I do not eat beef, nor have I ever had gout. He said I may be eating too many beans, but keep eating them. LOL.

• Surgery when on ibrutinib
I am having a cyst excision (ellipse) in my lower back at the end of this month. Because it involves sutures, I will have to discontinue ibrutinib for seven days before the procedure, on the day of, and seven days after the procedure (for a total of 15 days) to avoid internal bleeding. If you are having dental work done, which involves incisions, you need to contact your specialist for instructions on stopping the drug.

• When does a mutated copy of TP53 happen?
A mutated copy of TP53 happens when a cell divides during DNA replication.
NOTE: One way that the TP53 gene protects against cancer is by causing cells with damaged DNA (which is likely to contain cancer-causing mutations) to commit suicide, via a process known as apoptosis.

• To confirm a complete remission
It takes three tests to confirm a complete remission for the clinical trial:
Blood test: CHECK
CT scan: CHECK
Bone marrow biopsy: 2 years ago
My last bone marrow biopsy confirmed a complete remission response; however, I may be asked to have another BMB in October or January to verify the CR.

• Canadian Health Care
I had the lovely opportunity to meet with a 39-year old cancer patient from Canada. We discussed the healthcare systems in our countries. She said that health care is free in Canada. If you have a minor ailment like the flu, a cold, etc. it is great. If you need a specialist, you are in trouble. She was diagnosed with a cancer with a six-week survival. Her appointment to see a specialist in Canada was in six months. That is why she ended up in a clinical trial at NIH.

Take care. Be grateful. Be kind. I wake up every morning and count my blessings.

Wednesday, May 31, 2017

Reflections of a Cancer Survivor

June 1st is my mother’s birthday. I love that wonderful feisty woman with all my heart. Her joyful spirit is a constant reminder to me that survivors can live a joyful life. I miss her so very much. I was only 37 when she died of cancer.

July 12, 2017 will be my 5-year anniversary taking an experimental oral cancer drug that put me into clinical complete remission January 2015. This is a time for deep contemplation on the life I have been blessed with after I was given no options.

I know that at any time the cancer I have could raise it’s ugly head, so what have I learned and how have I managed to live my life well?

• Make my time here on earth matter.
• Forgive those people in my life who are caught in the quagmire of pettiness, unhealthy relationships, twisted logic, and judgment. Let them go with love, if they become too toxic for my survival.
• Tell those whom I love how much they mean to me.
• Live in the here and now. Today is all we have. Don’t get stuck in yesterday. It’s gone. The value – whether negative or positive -- made me who I am today. Tomorrow is a dream. It hasn’t happened yet.
• I am really good at certain things and I stink at other things. LOL. Spending my time doing things I am good at is a good use of time. Spending time doing things I stink at may not be a good use of my time, but it may develop my sense of humor, give me humility, and help me to respect those who excel at that thing.
• Don’t judge others. I have no idea what burdens they are carrying in their lives.
• There is always someone who is worse off than me. There is always someone who is better off than me. So deal with the cards I have been given and enjoy the ride.
• I am the master of my journey. We have this one opportunity on earth to live our lives. Don’t waste it.
• Don’t try to solve other people’s problems. It is their life and they have the free will to live it as they choose. Don’t give anyone advice, unless they ask for it. (I am assuming that you are reading this blog because you are looking for advice. LOL.) Most people just want to be validated.
• Count my blessings every day.
• Stay away from people who can only find fault in others. Life is hard enough without a Negative Nellie bringing me down.
• Don’t take life too seriously. Hang out with children. They know how to play. I watch my granddaughter sing and twirl and dance. There is much to be learned from children.
• Be kind. Be kind. And be kind.

Friday, May 12, 2017

Congressional Bills to help Medicare Cancer Patients with Drug Costs

Washington, D.C. Capitol

 From L to R: Jim Brewer, Rocky Harris (my son), Andy Gordon
La Verne Abe Harris, Senator Flake, Carolyn Earley, and Wes Gullet

Forty-three states and Washington, D.C. have advanced laws to ensure that patients taking oral drugs at home receive equitable coverage to patients treated at a clinic. These laws apply to those patients who have a state insurance. For those patients on Medicare or on a federal insurance, these state laws do not apply. That is why six of us were in Washington, D. C. the first week of May to talk to members of the U.S. Congress about the affordability of cancer drugs for those on federal insurance.

Wednesday, May 3, 2017 Senator Jeff Flake took a break from FBI Director James Comey's testimony before a Senate Judiciary Committee hearing to talk to the six of us representing the Leukemia & Lymphoma Society (LLS). Sen. Flake mumbled ”mildly nauseous” and shook his head as he approached us.

The LLS group talked to Senator Flake, Senator McCain’s office, and several House of Representative offices ( Representative David Schweikert's office, Representative Kyrsten Sinema's office) about several bills going through Congress that directly affect cancer patients. Thank you Jackie Davis of Nebraska, T. Irwin, Trudy Erickson, and Jerry A. Dale for providing letters that I hand delivered to the Congressmen and Congresswomen.

Here were our LLS Mission Day talking points for the Senate:
The Ask for the Senate was to cosponsor the C-THRU Act, 5.637 (Medicare Part D bill) to lower drug costs for seniors.

Medicare Part D prescription drug plans are becoming more costly to Medicare patients. Cancer drugs placed on a specialty tier force patients to pay a percentage of the retail drug price, not a flat co-pay.

Medicare patients would be able to negotiate the cost of the drug and use the plan-negotiated price —not the retail price— as the foundation for cost-sharing. This would lower the out-of-pocket costs substantially.

The Ask for the Senate was to vote NO on the AHCA, H.R. 1628

Insurance would not be affordable for cancer patients and the USA would revert to a health system where much higher prices are charged to a person who has a pre-existing condition, such as a cancer diagnosis. In the past this accounted for survivors paying more than 10 times the premium charged to a healthier person. Medicaid coverage for millions will be eliminated leading to an additional 24 million more Americans without insurance, according to the Congressional Budget Office.

Reject the AHCA and Congress needs to identify solutions to the problems between patients and their treatments by working with groups like the Leukemia & Lymphoma Society.

The Ask for the House of Representatives was to sponsor the Oral Parity bill, H.R. 1409.

Problem: Over one-third of the new drugs to fight cancer come in the form of oral pills. Because health insurance rules were written before the invention of oral drugs, chemo drugs delivered intravenously are covered, but oral drugs fall under prescriptions. This results in patients paying hundreds of thousands of dollars more to the health plan for oral drugs, even if the chemo drugs delivered intravenously cost more.

Solution: Cancer drugs are cancer drugs whether they are delivered intravenously or orally. There should be parity for Medicare patient out-of-pocket costs and for patients on federal health insurance. Forty-three individual states have adopted oral parity laws with no negative impact on insurance premiums. This protection needs to be extended to those 65 and older.

The following Ask was not honored by the House: The Ask was to vote NO on the AHCA, H.R. 1628

Insurance would not be affordable for cancer patients and the USA would revert to a health system where much higher prices are charged to a person who has a pre-existing condition, such as a cancer diagnosis. In the past this accounted for survivors paying more than 10 times the premium charged to a healthier person.
Medicaid coverage for millions will be eliminated leading to an additional 24 million more Americans without insurance, according to the Congressional Budget Office.

Reject the AHCA and Congress needs to identify solutions to the problems between patients and their treatments by working with groups like the Leukemia & Lymphoma Society.

Andrew Schorr, Co-Founder and President of Patient Power posted very good news from the Business Wire for Washington, D.C. cancer patients:

The Specialty Drug Copayment Limitation Act signed by D.C. Mayor Murial Bowser was reported on May 11, 2017 to protect local patients from high copays for prescription medications. The new law, titled the "Specialty Drug Copayment Limitation Act,” will “impose a limit on the amount that a person must pay in copayment or coinsurance through a health benefit plan for a prescription for a specialty drug.” This refers to prescriptions for progressive, debilitating diseases such as cancer – the bill specifically mentions the blood cancer multiple myeloma. 
“The law doesn’t go into effect until January, but we want to acknowledge this important step now amidst all of the turmoil over federal healthcare legislation,” said Andrew Schorr, Co-Founder and President of Patient Power and a 21 year cancer survivor. “High out of pocket payments can prevent many patients from taking the full dose of medications they need. Putting a limit on those personal payments can help patients like me. I’ve depended on specialty medications to keep me alive and well and working 21 years since my initial diagnosis.” 

Esther Schorr, Patient Power Co-Founder and Chief Operating Officer, added, “The law will limit out of pocket payments to $150 for a 30-day supply of specialty medicines and $300 for a 90 day supply. This is critically important not just for patients but for their families. We should never have to make the terrible choice between the health of our loved one and the prospect of bankruptcy or losing our home.” 

Affordable copayments do make a difference. Greg Simon, Executive Director of the Cancer Initiative for the Biden Foundation and a CLL survivor, recently told Patient Power in an interview that manageable copays made a big difference for him. He said that although some innovative cancer therapies can be very expensive, his own copay was very affordable. 

This may sound costly to the healthcare system, but it actually saves money. A 2013 report study published in the Journal of Clinical Oncology said patients not taking their medications as prescribed “resulted in $105 billion in avoidable health care costs in 2012.” 

Similar bills have also passed in California, Delaware, Louisiana, Maine, Maryland, Montana, New York, and Vermont. The D.C. law takes effect January 1, 2018.

Now if we could just get this passed across the USA for Medicare patients!

Thursday, April 27, 2017

Co-Pay Assistance on Medicare

Early Monday morning, May 1st, I am flying to Washington, D.C. with my son to attend a Leukemia & Lymphoma Society (LLS) conference. The main purpose for me is to talk to several Congressmen and Congresswomen about drug parity bills that are on the table. Once cancer patients go on Medicare (age 65), the out-of-pocket cost of oral cancer drugs becomes unaffordable for most people.

Cancer drugs are cancer drugs whether they are delivered intravenously or orally. The insurance laws were written before oral cancer drugs were invented. This needs to be changed.

In the meantime, Len K (lenkeck) gave me permission to repost his Health Unlocked response to help those Medicare patients struggling with co-pay payments and access to their cancer drugs. Please note that these non-profit organizations are usually funded by Pharma companies.

See the full list:
Programs that Assist with Medication
Some organizations offer to help insured patients that are having difficulty paying the co-pays for their medications or their insurance. These programs are for very specific diseases or medications. Some of these programs include:
Caring Voice Coalition was established early in 2003 to serve comprehensive needs of all individuals affected by serious and chronic disorders, through collaborative efforts and partnerships with organizations established to serve those patient populations. Current programs include: Insurance Reimbursement and Advocacy, Vital Relief (need based financial assistance limited to certain disorders or medical conditions), Compassionate Care (counseling and counseling referrals) and Public Advocacy.
The Chronic Disease Fund, a non-profit organization founded in 2003. Its focus is to provide assistance to those under-insured patients who are diagnosed with chronic or life altering diseases that require the use of expensive, specialty therapeutics. Visit: 
The HealthWell Foundation, a 501(c)(3) non-profit organization established in 2003 to address the needs of individuals who cannot afford their insurance copayments, premiums, coinsurance, or other out-of-pocket health care costs. Visit:
The National Marrow Patient Assistance Program and Financial Assistance Fund. The Marrow Foundation is the fund-raising partner of the National Marrow Donor Program (NMDP). Funds from this program help patients pay for searching the National Marrow Donor Program (NMDP) Registry and/or some post-transplant costs. Applications for Patient Assistance Program funds must be submitted by an NMDP transplant center. Eligible patients may ask their transplant center coordinator to apply for one or both programs. Call 1 (888)999-6743 or email
The Patient Access Network Foundation is a non-profit 501(c)(3) organization dedicated to supporting the needs of patients that cannot access the treatments they need due to out-of-pocket health care costs. Visit:
The Patient Advocate Foundation, a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. The Patient Advocate Foundation's Co-Pay Relief (CPR) Program provides direct co-payment assistance for pharmaceutical products to insured Americans who financially and medically qualify. The Program offers personal service to all patients through the use of CPR call counselors. Visit:
Patient Services Incorporated, developed in 1989, is a non-profit charitable organization primarily dedicated to subsidizing the high cost of health insurance premiums and pharmacy co-payments for persons with specific chronic illnesses and rare disorders. PSI is committed to assisting persons with chronic medical illnesses in accessing health insurance and pharmacy co-payment assistance. Families requiring assistance in maintaining the high cost of their health insurance premiums or co-payments are offered assistance based upon the severity of medical and financial need. PSI offers a "safety net" for persons who have expensive chronic illnesses and for those persons who "fall through the financial assistance cracks. 
Visit: https// 

Love & Gratitude,
Dr. La Verne

Monday, March 6, 2017


Sometimes it is good to be doing activities that help me forget that I am a cancer patient – like tai chi, playing with my grandchildren, painting, and stand-up comedy. But being a patient advocate is very rewarding, and often introspective for me.

I recently returned from the Seattle Cancer Care Alliance (SCCA) to establish a Plan B and Plan C in case I (or anyone in my situation) relapses on ibrutinib, has problems with side effects, or fails to have access to the drug due to financial reasons. My Plan A has been ibrutinib (aka brand name: Imbruvica) so far.

I started on the drug to combat Chronic Lymphocytic Leukemia (CLL) in a clinical trial July 12, 2012. I obtained complete clinical remission January 2015. What most people don’t realize is that does not necessarily mean you are cured of cancer. If you are MRD-positive (minimal residual disease) like me, there are still 0.5% leukemic cells floating around in my bone marrow. That is why I take an oral cancer drug every day.


When I entered the Seattle Cancer Care Alliance building, I stopped by one of the infusion rooms on the fifth floor to see a CLL virtual friend in the flesh … Lisa M. Weiss. Lisa had been intolerant on ibrutinib, and relapsed and was refractory to chemo. She is now on acalabruitinib. Lisa and I spent a couple hours chatting. We had talked before on the phone and she recommended the SCCA. She is a CLL patient, a patient advocate, and manages a Facebook group for women with blood cancers (CLL/SLL/NHL Cancer support for women). She is very knowledgeable and I loved talking shop with her.

We discussed how CLL is a disease of the immune system. Lisa gave me the link to a couple articles:
(1) Scientists have discovered 41 DNA changes that influence the risk of CLL (
(2) The Center for Prevention of Progression of Blood Cancers (CPOP) research initiative at Dana Farber Cancer Institute in Boston is researching chromosome mutations in CLL patients (


After my visit with Lisa, my husband and I sat down with Dr. Mazyar Shadman from Fred Hutch/SCCA to discuss the 400 pages of my medical records and to discuss my Plans B and C.  Mazyar Shadman, M.D., M.P.H is an Assistant Professor, Medical Oncology, University of Washington, and an Assistant Member, Clinical Research Division, Fred Hutchinson Cancer Research Center. He spent an hour and a half with us. He told us about the genetic research that is being done at SCCA, the CAR-T cell therapy, allogeneic bone marrow transplants (which many CLL experts see as a last resort), and the research being done by Dr. Richard James, which is funded by an NIH grant.

If a cancer patient relapses on ibrutinib, it will usually be within the first few years. Most are 17p-deleted folks like me. It has been four years and eight months for me. Dr. Shadman said that for patients like me, it has been found that the quality of response and the side effects get better with time. My worst side effect was the severe cramping in muscles in my body and my limbs. Hydration and exercise with stretching seems to have been the key for me. I have to be mindful of what I eat because of inflammation. If I give you a fist bump instead of a handshake, it is because I am immune-compromised and hands are the number one carrier of germs. I am not trying to be cool. LOL.

Here is a tidbit of information for you science nerds:
Dr. Shadman said that there are two CLL mutations in resistance that are key to patients who are taking IMBRUVICA (A.K.A. ibrutinib): (1) BTK-C481S mutation, and (2) PCG2 mutation, an enzyme mutation that makes the BTK pathway independent. The PCG2 mutation is the one he said would apply to me, if I relapse.

So what are my Plans B and C in case I either relapse on ibrutinib or do not have access to the drug? Dr. Shadman said there are many novel agents available in clinical trials. One drug that is off trial and FDA approved is venetoclax. That would be his first choice for me.

If I have disease on board, I would be pre-treated with FC (Fludarabine + Cyclophosphamide) chemotherapy before a CAR-T Cell procedure. I wrote about this trial at the University of Penn in one of my previous postings. Now remember I am chemo-resistant (17p deleted and p53 mutation), so I asked him why I would be treated with chemo. He said it is to suppress the immune system.

SCCA has done 150 CAR-T therapies in their clinical trial. It targets CD19. Because CD19 is also found on healthy B-cells, the patient will have to have IVIG infusions every month or two, but the cancer is essentially gone from your body. It is a small price to pay.

It is in those moments when I meet with the medical team or researchers that I remember how serious immune deregulation disease is.

Cyndi Stansbury entered my NIH trial with ibrutinib five months before me and relapsed in 2015. Here is a success story of the CAR-T Cell procedure:

E-mail from Bill Stansbury:
“My wife, Cynthia Stansbury, was one of the original patients in the NIH Ibrutinib trial for CLL. My wife has the 17p deletion. She was admitted into the trial in February 2012. She did well on the drug with little side effects, other that bruising easily and one bout of A Fib. In October of 2015 she began to relapse with escalating WBC. Cynthia was referred to Stanford where she was admitted into a trial for ABT-199 (Venetoclax). She was hospitalized briefly at the beginning of the trial due to tumor lysis. She relapsed off the Venetoclax after eight months showing enlarged lymph nodes on a CT scan.
It was suggested to us by the staff at Stanford that here best option was CAR-T immunotherapy.  To make a long story short, we just got back from three months in Seattle where Cynthia underwent CAR-T therapy. It was not easy by any means. She underwent three days of chemotherapy prior to the day when she was to have her cells re-infused. At that time she contracted RSV (a viral infection). She had to get over the infection before she could get her cells re-infused. That took two weeks. They then had to repeat the initial chemo then re-infuse her cells several days later. One week after re-infusion she was hospitalized for 11 days due to cytokine release syndrome. She was extremely ill during this period. About 20 days after the re-infusion, Cynthia underwent a spinal puncture, bone marrow biopsy, blood tests and PET/CT scans. There was no evidence of CLL in her blood, bone marrow or spinal fluid. Her lymph nodes showed a 40-70% reduction in size. Her FISH test showed no 17p. The care she received in Seattle was excellent. Cynthia goes back in April for a check-up.”

Cynthia was on the Emerald Team at the SCCA clinic, and Dr. Maloney oversaw the CAR-T clinical trial in which she was enrolled. Dr. Ramos was her doctor during the procedure, and follow-up will be with Dr. Shadman and Dr. Turtle. Bill and Cynthia Stansbury have graciously offered their email ( if anyone has any other questions.

Life goes on. I am preparing for a stand-up comedy show at the Improv this month to benefit cancer research for the Leukemia & Lymphoma Society. I am still alive and kickin’ because of cancer research. I am eternally grateful and I thank God for every beautiful day I have on this earth. I am even thankful for the crappy days. LOL.

Friday, December 16, 2016

Laughter Therapy

“The most wasted of all days is one without laughter.” – E. E. Cummings

A&K Sisters (Diane Miner and MaMa La Verne)
Laughter therapy uses the gift of humor to counter stress. It is learning how to laugh at things in your life that don’t seem funny at the time. Being diagnosed with cancer and the passage that follows is a stressful situation. I decided early on in my cancer journey that I could either use my limited energy to cry about it (which is acceptable and necessary every once in a while)… or I could heal myself and promote my wellbeing through comedy.

Even in my “horizontal days” – the days I did not have the energy to do anything – I watched comedy movie marathons lying on the sofa without guilt. I was listening to my body and it needed rest. I was listening to my mind and heart and they needed joy.

When I reached clinical complete remission January 2015, I decided I would do something out of my comfort zone. I signed up for a class on how to write jokes at out local arts center. There I was… the only female in a roomful of 20- and 30-somethings. It made me feel like I was back working with my university graduate students – something I missed terribly, since I had to leave my professorship shortly after I was diagnosed, because of the fatigue and side effects. Most of my jokes centered on my husband Carl, who I refer to as “Coach” in my act. I have been married to the man for over 40 years, so I had plenty of material.

Next session was the stand-up delivery class. I showed up and I was the only person from the joke-writing class to move on. The rest of the “students” were stand-up comedians who had performed in public before. Some were even headliners at the comedy clubs. Oh, brother! I wondered if I had made a BIG mistake. Now granted, I had lectured in front of hundreds of university students, but the students had to be there or they would flunk. LOL. This was different.

Then the leader “Creepy Guy” asked me to go up to the mic, introduce myself, and say something funny. The first thing that went through my head was that I was going to flunk this class!

But I am not a quitter, so I slowly walked up to the mic. “Hello, I’m MaMa La Verne and I’m a virgin [long pause and confused looks on their faces] … of comedy. Everyone laughed. I was rather surprised. So I guess it was going to be okay.

I wrote my jokes for my first show and rehearsed in front of Coach. He said to me, ”Are you planning on making people laugh?”

“Well, of course,” I said.

“Well, you are going to have to turn it up a notch!” he advised.

“But most of the jokes are about YOU!” I said.

My husband responded, “I don’t care. Just make them laugh.” Coach is my inspiration and one of the finest men I know.

I had gotten to know several of the female stand-up comedians at the center. One was Diane. In our after-class conversations I shared with her my cancer diagnosis. She shared with me the death of her husband of 48 years and the cancer journey of her 20-year-old son. We bonded.

So I performed in a series of three class clowns acts at the arts center, when it struck me: Who needs laughter therapy the most? Cancer patients! So I formed a group: The A&K Sisters (Alive & Kickin’). The only problem was that I was the group.

A few months later Diane came up to me after class and was a little shaken. “The doctor says I have multiple myeloma!” I blurted out, “Oh, good! Then you can be my partner and we can do stand-up comedy for cancer survivors!” At first she looked confused. And then she gave me a big smile. She said that was the strangest response she had ever gotten.

So Diane and I have performed at the Improv for a room of about 200 cancer survivors, caregivers, and donors. We performed at the Virginia Piper Cancer Center in Scottsdale several times, and we will be performing for about 100 women in February at St. Joseph’s Hospital in Phoenix for a non-profit called Face-in-the-Mirror ( These pro bono stand-up comedy performances are gifts of love and gratitude for those who did not choose to go on the Big-C journey. This is our volunteer work in our soup kitchen.

MaMa La Verne: Hope is the word: Spread the laughter, heal the soul.
Diane: In the end what matters most is how well you live,
MaMa La Verne: how well you love,
Diane: how well you learn to let go,
MaMa La Verne: how much you laugh
MaMa La Verne & Diane: and how hard you kick cancer’s ass!

Pass it on…