Hope in this Age of the New Normal

Cancer survivors understand how getting the diagnosis of cancer rocks your world. We learn to live with what is called a “new normal.” The world is now in the process of having to adjust to a new normal with the pandemic changing how we live and how we relate to other human beings. I wonder if shaking hands will become a thing of the past. Quite frankly, I have been doing a fist bump since I was diagnosed with cancer.

I have been following the stay-at-home orders, safe distancing, and wearing a mask. I am a Prime Member of Amazon, so the delivery people and I are good friends now. LOL. Sometimes my groceries get delivered to my doorstep, and sometimes I pick up groceries at Fry’s after ordering online. They just put the bags in the trunk of my car. I hope the grocery stores continue this service. It is quite convenient. Maybe this will be my new normal.

NIH CLINICAL TRIAL NEW NORMAL

As you all know, I have been in the ibrutinib clinical trial at the NIH since July 12, 2012. I was diagnosed as a high-risk chronic lymphocytic leukemia (CLL) cancer patient. I had less than 1% chance of finding a bone marrow donor, since I am half-Japanese and half-German. The Gold Standard FCR chemo treatment was only going to give me a 5% success rate with a maximum of nine more months before a relapse. My only hope was a clinical trial.

At the time of diagnosis in 2009, there were no trials available. When a trial at M.D. Anderson was available a few years later, I did not qualify because I had to be 65 or older and I was younger. I was blessed to hang in there for a trial a few months later at the National Institutes of Health (NIH) that saved my life. Thank you, Dr. Chaya Venkat, founder of clltopics.org, for being my mentor and encouraging me to negotiate being in the trial, since I was rejected the first time. Gratitude also goes to my son Rocky Harris, who contacted Louis J. DeGennaro, Ph.D., President and CEO of The Leukemia & Lymphoma Society, to determine which trial would be best for me. And much gratitude goes to Dr. Mohammed Farooqui and Dr. Adrian Wiestner at NIH, who allowed me to participate in the study.

NIH is again saving my life, along with Pharmacyclics and Janssen. I usually have to fly to Washington, D.C. four times a year for my medical exam and my “drug run.” I was scheduled to fly to D.C. in April but received a variance in the clinical trial because of the pandemic. NIH shipped my cancer drugs to me by FedEx and I was able to have my medical testing done locally. I am very grateful.

CAN IBRUTINIB HELP COVID-19 PATIENTS?

A new clinical study is being conducted at Dana-Farber Cancer Institute examining ibrutinib and COVID-19 infected patients. Their hypothesis is that the blood cancer drug may protect against the potential cytokine storm that promotes damage to lung cells and inflammation. (Refer to the article: https://www.eurekalert.org/pub_releases/2020-05/dci-dtt051820.php). This would be good news for cancer patients taking ibrutinib. Thank you Anne Amster for the article.

COVID-19 AND ANTIBODY TESTS

This morning my husband Carl and I got our Covid-19 test and our antibody test in Mesa, Arizona. Because we are early birds the process only took a few minutes. The employees were competent and courteous. It will take five to seven days to get the results.

This is the first winter I have had a series of upper respiratory infections from right after Halloween 2019 until the first week in January. Yes, I have been asking myself, “Was that the coronavirus?” Luckily the week of Thanksgiving and the week of Christmas I was well. How’s that for good timing?

COMMUNICATING WITH GRANDCHILDREN

I leave you with a little joy in our lives. Part of the new normal is being able to stay in touch with our 14 grandchildren through technology.  We have been facetiming and texting. One of the fun projects we did during the lockdown was creating “The G-Ma and G-Pa Show” for them with humorous makeovers and lip syncs. 

https://youtu.be/JbSLjuckrRU (I hope this link works for you).

I cannot wait until I can hug them all. That will be the best medicine of all.

Love & gratitude,

Dr. La Verne

COVID-19 and Cancer Survivors

Dear friends:

As a cancer survivor, I have been running around with a dark cloud over my head since the summer of 2009. I have been faced with death and I know what he looks like, but I have made a decision to not be afraid to live.  I don’t know when I will face the threat of death again, but I will not let him have power over me. With all the chaos and unknowns from the threat of COVID-19 -- the coronavirus, others now understand a little of what cancer survivors have been living with after they were diagnosed.

Fear is a normal response to the unknown and it feels very real. Our human brains are all hardwired to fear in order to survive, but sometimes fear can stem from the creation of a series of what-ifs that can become debilitating. Not managing your fear is what gives your power away. Psychologists tell us that we have to learn to emotionally process our fear in order to be able to take one careful step forward. Fear means to proceed with caution. It does not mean to stop. Panic is fear out of control.

So to all my friends who are cancer survivors and are at-risk with compromised immune systems, I say:

Stay strong.

Stay emotionally connected to others.

Protect yourself.

Be kind to others.

Smell the air, even if it is with a mask.

Count your blessings.

Listen to music.

Read.

Walk.

To those who now have met fear, I say, “Welcome to my world. We will get through this together, even if I have to give you a virtual hug.”

#HarrisStrong

 La Verne

Goodbye 2019. Hello 2020!

Virtual Triathlon

2019 was not a good year for me. It had nothing to do with my health and everything to do with personal issues in the lives of the people I love. So I wanted to end the year on a high. I signed up for a Virtual Triathlon.

I am not your typical triathlon participant. I am a 67-year old (soon to be 68 this month) cancer survivor -- a university professor, who is also a grandmother of 14 grandchildren, and a little overweight. I have never been an athlete, but I have been a dancer. 

I have struggled with knee issues for the past three years and have been told by surgeons that I need to have both knees replaced. Because I have been living with constant pain, it has been difficult for me to be as active as I want to be. In my family the rule is that you cannot complain about anything, unless you want to offer a solution. My husband and my son suggested some pre-surgery physical therapy. I listened.

Six months ago I could only get out of the pool by crawling out on my stomach (much like a seal). I could only stand up by doing what my granddaughters called out, "Look! Grammy is doing downward dog!" I can now step out of the pool VERY carefully without support.

Six months ago I could only hold on to the edge of the pool and kick my legs. I could not swim one lap because of the pain. This was very disappointing to me, because at one time I was a decent swimmer.

Four years ago I used to cycle 17 miles in one hour. Six months ago my eight bone spurs and my half-missing meniscus padding made it possible only to complete one circle of movement, after 10 minutes of pain going back and forth to get my knees "oiled up." 

Running was out of the question. Six months ago it was difficult for me to walk without holding on to the wall, if I had been sitting for a while. This was very frustrating to me, because I have always been an active person.

So my son convinced me that I could participate in the Virtual Triathlon. What a crazy idea!

It wasn't pretty, but I did it!

Swimming was going to be the hardest event for me, since the movement of my head in the water often causes vertigo for me. I decided to swim all 20 laps on my back. It took me 25 minutes, but I was not in a hurry. I just wanted to finish what I began. One advantage I had was that I had enough fat on my body to keep me afloat and I knew I would not drown.

Another day I cycled on a stationary bicycle in the gym in the dark, watching a superhero movie about the Marvel Comic Avengers. The first 8.5 miles took me one hour and then another 30 minutes to go another four miles, but I did it all in one session.

I walked, and at the end limped 3.14 miles, instead of running. It took me one and a half hours. At the very end I looked a lot like Quasimodo. LOL. But I smelled the air. I counted my blessings. And I rejoiced in the fact that this old lady had completed an athletic milestone that was customized for someone like me to be successful. I am grateful to USA Triathlon for including me. And now that I have improved my physical fitness, I hope to recover sooner from my knee replacement surgeries. Then watch out!

-- Dr. La Verne Abe Harris (aka MaMa La Verne)

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6 Years on Ibrutinib

I still have chronic lymphocytic leukemia; however, I am still in clinical complete remission. I am grateful. It has been six years on ibrutinib.

Patients in the NIH study I am participating in, who have relapsed on ibrutinib, have had prior treatment. None of the patients who have taken Ibrutinib as a frontline treatment for CLL with 17p deletion have relapsed in the study. That is incredibly good news for me.

Minimal residual disease (MRD) negative status is reached when counts are less than 0.01 percent. MRD negative status has not been found in 17p deleted participants on one drug. My last cytometry test revealed that my counts are 0.09 percent… close, but no potato.

Those participants who have reached MRD status often wonder whether they could stop taking the drug. Dr. Adrian Wiestner is my doctor at the National Institutes of Health in Bethesda, Maryland. While there is a push for stopping treatment with Ibrutinib after a fixed time, he believes there is a strong scientific argument to continue the B-cell receptor indefinitely.

Latest advances in technology have made it promising to detect evidence of cancer – minimal residual disease (MRD) – that continue even when traditional tests come up good.

Two Phase II studies of a German CLL study group discussed the value of MRD negative status (Kovacs et al, 2014). Here is the take-away: Both MRD negativity (with a threshold of <10^-4leukemic cells per leukocytes) and the occurrence of a complete response (CR) predict long progression-free survival (PFS). This means a longer time without disease growing back. Perhaps this will be a prerequisite for a cure.

Take care my friends. I am hanging in there for the long haul.