CLL patients developing antibodies from vaccines

Today I would like to chat with you about the antibody response to vaccines given to CLL patients. The first part of my post is an anecdote and further studies are ongoing. The second part of this post include the scientific results of two other vaccines given to CLL patients, two studies in which I participated.

PART 1: My friend Anne is in the same clinical trial at National Institutes of Health (NIH) as I am. We have been both been taking Ibrutinib since 2012. She got both shots of the Pfizer vaccine and was curious if her body would respond by creating antibodies.

In a normal healthy person, the Covid-19 immunity process typically takes two weeks after the second dose of the vaccine. One month after Anne’s second dose the total IgG/IgM antibodies to SARSCoV-2 Nucleocapsid protein test results were nonreactive, which means no antibodies were found. However, eight weeks after Anne got the second dose antibodies were finally detected: Positive >0.79. There’s a little hope here. It will be interesting to see if the antibodies continue to increase in number.

As a cancer survivor and Ibrutinib user, I am interested in my own immunity process. NIH will soon be opening a CLL vaccine clinical trial on antibodies. As soon as I am notified that their proposal has been approved, I will post the information to the NIH clinical study on the antibody response to the vaccine in CLL patients.

Another option is the Leukemia and Lymphoma Society (LLS) is setting up a patient registry and is paying for quantitative antibody testing at LabCorp. This study expands to more types of cancers. The link to their registry is: https://www.ciitizen.com/LLS/?utm_source=LLS&utm_medium=Partner%20Landing%20Page&utm_campaign=&utm_content=&utm_channel=LLS&utm_vehicle=

PART 2:

I was one of the participants in the NIH CLL HEPLISAV-B (hepatitis B) and SHINGRIX (shingles) vaccine studies. The recently published initial results from the vaccine studies has been published.

The full article can be found here: https://ashpublications.org/blood/article/137/2/185/474376/Effect-of-Bruton-tyrosine-kinase-inhibitor-on?searchresult=1

Below is a brief summary of the results from NIH:

SHINGRIX: Approximately 60 percent of untreated patients CLL patients and approximately 40 percent of BTK-inhibitor (ibrutinib or acalabrutinib) treated patients developed an antibody response against the shingles virus. This response rate is less than in the general population, however we are encouraged by these responses and recommend the SHINGRIX vaccine to CLL patients that have not yet received it. However, we do not know how long the antibody response lasts. The antibody response to the Shingrix vaccine is based on a research test and, therefore, is not part of your CRIS record.

HEPLISAV-B: Approximately 30 percent of untreated patients CLL patients and approximately 5 percent of BTK-inhibitor (ibrutinib or acalabrutinib) treated patients developed antibodies against the hepatitis-B virus. Patients treated with a BTK-inhibitor do not appear to reliably develop antibodies following vaccination with HEPLISAV-B. CLL patients that are untreated are still able to develop antibodies against the hepatitis-B virus, albeit at lower rates compared to the general population.

Side Effects: The side effects for both SHINGRIX and/or HEPLISAV-B were very similar compared to those observed in the general population – there is therefore no evidence to suggest that CLL patients suffer from more side effects following vaccination.

As cancer survivors we have some hopeful news. As Dr. Brian Koffman says, “We are all in this together.”

When Life Sucks, I Choose Joy

Good mourning! 2020 has been the year of “non-stop awfulness,” according to Dave Berry, a reporter for the Miami Herald.

But I believe Harriet Beecher Stowe says it best.

“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.”

Life sucks when you have cancer and a pandemic. But I have made a decision to choose joy, even though I am such an imperfect human being.

Years ago I learned to turn my despair into hope. I learned to pray for those I love dearly and those I do not. I learned that forgiveness equals peace. I always believed in kindness and doing to others as you would have them do onto you. I believed in loving your neighbor.

But I find that I fall a little short of those goals today. The past few years have forever changed who I am. I have had to change who I choose to be in this world. I am not as good of a human being as I always strived to be. I am more cynical and more discriminating. I do not give my heart out freely anymore. I avoid toxic people like the plague.

As the Pandemic still looms over our heads, I have been faced with the deaths and sickness we have experienced in my family, the increased isolation, the constant irritation of people who live in La-La Land, others who judge, lie, and live in an alternative reality with no consequences … I could go on and on. But surprisingly I have become much stronger, more fearless, more resilient, and more authentic.

I often wondered why some problems (like a cancer diagnosis) or certain toxic people make your life a living hell, and I found the answer. Byron Katie, author of Loving What Is states, “It’s not the problem that causes our suffering: it’s our thinking about the problem.” So it’s our self-talk that needs to change, if we are ever to work our way through chronic pain, fear, rage and despair. You may not have control over what happens to you, but you own your attitude. I have some work to do.

Here is how I have had to deal with life:

• FRUSTRATION

Sometimes life does not feel real. It feels like we are living in the Twilight Zone. It’s okay to have a stinky day. Sometimes you just have to let your frustrations out by exercising, listening to music, venting or journaling – whatever works for you, but does not harm others or yourself.

But when you are ready, facing pain is what gets you through it. Allow yourself to feel the pain and be unhappy. PAUSE and allow yourself to feel it. Do not numb it. Do not run away from it. Do not distract yourself. Do not lash out and hurt others. Face it head on or the pain will be prolonged.

Giving ourselves permission to feel the disconnection, the anxiety, the rage, the hysteria, the fear, and the misery is necessary to process the tender feeling of just being alive. Accept the pain and process the feelings.

Do not focus on WHY? Why did this happen to me? It just is. So, the next question is “What are you going to do about it?”

• GRATITUDE

Having gratitude is a special power to change your mindset. I wake up every morning and count my blessings. It does not matter how small the blessing is, there is always someone who is worse off than me. Live in the now. In fact, sometimes I wake up in the morning and say to myself, “Halleluiah! I am still alive!”

• BREATHE

Sometimes to battle stress take a big breath of air through your nose and slowly breathe it out through your mouth. I have believed in breathing through meditation for many years. It has helped me get through many things in my life. Even my Godson Ryan McBurney believes in the power of breath work. He has a facebook group called “Breath, mind, and body for high performers.”

• THE BLAME GAME

Pain lasts longer when you blame others. STOP! Don’t get stuck in the blame game cycle and the victim mentality. Move on or you will not find joy.

• PERSISTENCE

Do not surrender to grief and fear. Be persistent. Fake it until you make it. It ain’t over until the fat lady sings. And this fat lady ain’t singing yet!

• THIS TOO SHALL PASS

“This too shall pass” are words I have spoken in my head for many years. When life sucks, remember that this is temporary. Ask yourself: What can I learn from this experience? How can I respond better next time?

AND IN CONCLUSION

Life is complicated. Life is not always good. Sometimes it sucks. I have intentionally decided to choose joy in spite of it. It is a healthier and happier way to live my life.

Love & Gratitude,

Dr. La Verne

Cancer, Pain, Death, and Voting

Today is election day and it is probably the most important political election in my lifetime. But what does this have to do with cancer?

Well, being a cancer survivor changes your perspective of the world and the people in your life. You realize how fragile life is. You understand the cycle of life and the reality of death. You realize it is important to stand up for what you believe. You understand the importance of character, respect, kindness, and the journey for the truth. The people in your life become very precious.

When I was a child, I mistakenly believed that all grown-ups were good and acted like adults. Boy, was I wrong!

What being a cancer survivor really changes – at least for me – is the knowledge that some people you love can emotionally cause enough pain in your heart that they literally die in your life even though they are still alive. They become toxic.

When you have a catastrophic event happen in your life, it becomes a healthy choice for survival and wellbeing to stay away from toxic people. Sadly, sometimes those toxic people are family, friends, or neighbors.

My Dad always told me that arguing about religion or politics is a no-win situation. How wise he was! I never thought his wisdom could have a connection with cancer.

I have witnessed this pandemic and this election bringing out the worst in people. I had hoped it would bring out the best.

Be patient with me. I need to give you a little background to those of you who do not know me well: My mother was a German immigrant to the U.S. She had to have 86 documents signed to prove that she was not part of the Hitler Youth Organization before she could legally come with my father to America. My father was Nisei – first generation Japanese-American, born in this country. He told me many stories of intolerance, hatred, and division based upon the fact that he looked different.

Because I am half and half – half Asian and half White, I have had the benefit of White Privilege. That is, people assuming that I am Caucasian. I have been able to see and hear what people really think.

Having a blood cancer that does not always show itself to others, puts me in a similar position. Shortly after I was diagnosed with high-risk chronic lymphocytic leukemia, I heard these comments: “You don’t look like you have cancer.” “You have the good cancer.” “You really must not have cancer.”

Now with the pandemic, I am concerned because even though I am in remission, I have a compromised immune system. I wear a mask to protect you. Wearing a mask to protect me is a kind gesture to a cancer survivor. It is not political. It is human kindness.

I have gone to Congress several times to explain the importance of healthcare accessibility for every American, as well as to discuss the cost of cancer drugs and the value of these drugs. This is not political. This is how we repair the country I love.

So, on this day my thoughts are deep and a bit sad. After this election half the country will be rejoicing and half the country will not. The question is … what happens next? What behavior do we model to our children and our grandchildren? What legacy do we leave them? Will we ever become united? Will we ever again behave like grownups?

Please vote! The right to vote is an extraordinary privilege. Do not waste it.

Negative and Negative

I got the results of my tests.

Well, it looks like I am negative for COVID-19 and negative for having antibodies. That means that the upper respiratory infections I had off and on all November, December, and January were not the Coronavirus.

The state of Arizona is opening up, but look at how the number of cases are spiking. Here is an excerpt from The Washington Post:

“14 states and Puerto Rico hit highest seven-day average of new coronavirus infections”

By Kim Bellware and Jacqueline Dupree 

June 8, 2020

Since the start of June, 14 states and Puerto Rico have recorded their highest-ever seven-day average of new coronavirus cases since the pandemic began, according to data tracked by The Washington Post: Alaska, Arizona, Arkansas, California, Florida, Kentucky, New Mexico, North Carolina, Mississippi, Oregon, South Carolina, Tennessee, Texas and Utah.

So ... What happened to the CDC advisement of 14 days of no increases? Does the increase in numbers mean that more people are being tested? When is it safe for cancer survivors like me to go out and play? When is it safe for me to fly across the country to meet with my medical team in Bethesda, Maryland? Dr. Fauci!?!

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