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)

____________________

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.

I am Good!

Back from NIH and the meeting with my medical team. I had the wonderful experience of sharing some time with my blood brother George and my blood sister Fran. I remember one time years ago we were laughing so hard in the clinic lobby. We were laughing about cancer. Yes, we have a sick sense of humor. It has gotten us through all these years together as survivors.

Good news! No more CT scans or bone marrow biopsies in this clinical trial for me. I am going on six years with ibrutinib.

Well another boring normal blood report. My platelets are in the normal range but at the lowest it has been. These numbers fluctuate with infections.

My white blood count is 9.7 (3.98-10.04 K/uL) is normal. Lymphocytes Absolute: 1.34 (1.18-3.74 K/uL) is normal.

There are two arms of this clinical trial: Arm A for elderly (65 and older) and Arm B for 17p deleted. Even though I am technically “elderly” now, I am in the Arm B – the poor prognosis arm, the difficult cases. There are 35 of us in the B arm and eight are out of the study because of relapsing. Most have moved on to venetoclax prescribed by their home doctor and are doing well. Those patients come to NIH for follow-ups and NIH acts as a consultant. The rest are either in alternative clinical trials. One relapsed on venetoclax and had an unsuccessful CAR-T procedure at Seattle Cancer Care.

We had to sign another clinic consent form because five ibrutinib users throughout the United States have had issues with arrhythmia, which is irregular heartbeats. I do not have scientific evidence, but most of the patients I know about who have this side effect have had prior heart issues before going on the drug.

I had an appointment with my cardiologist a couple days after I returned from NIH to see if I needed to be on blood pressure medicine due to the side effect of increasing high blood pressure. I made the appointment three months ago. I thought that was one of my side effects, since my blood pressure has been increasing the past year. Surprise! My blood pressure at NIH was 123/51. In the second NIH reading the diastolic number (bottom) went up a little. My cardiologist looked at all my readings from the past month and my blood pressure is normal. He said I must have fixed myself. Diet and exercise is the key. Here is the humor in that statement: Because I have had a bum knee, I have not exercised the past couple of months and gained several pounds. As a post-menopausal woman, I can look at a slice of bread and it appears on my hips, if I don’t exercise. Go figure!

So, I am good. I just keep on keeping on and try to live an authentic life. (((HUGS)))

R.I.P. my courageous friend, Lisa Minkove

Damn damn damn cancer! 

Monday, April 9, 2018 I lost a very special blood sister, Lisa Minkove. People who know me understand that I rarely cry. It has been conditioned out of me, but I am crying now. I am heartbroken.

Lisa was a CLL patient advocate. Her facebook page offered words of wisdom for women battling CLL, as well as scientific papers. This was her second act.

Lisa and La Verne in SCC February 2017

A little over a year ago I visited Seattle Cancer Care and spent some time with Lisa. She had relapsed on ibrutinib and the medical team was trying to find another option for her… and another… and another. This time we were hoping for a cure with the CAR-T procedure. Lisa was a patient at Fred Hutch and SCCA for seven years with Dr. Maloney. 

Lisa wanted Dr. Brian Koffman to get in the trial before it was filled, since they were accepting only seven more participants in the Phase 1 trial. Lisa talked to the trial medical team about him. I told her that my blood brother Dr. Brian Koffman was also a patient in SCCA and he was having the same procedure and that she should seek him out. She chuckled and said she had already done that, but did not meet him and his wife in person until right before she received the infusion. Dr. Brian was further along in the procedure than her, because she had to deal with a bout of shingles which delayed her procedure.

I communicated with her a couple days before she passed. She was in good spirits. I told her how courageous she was. She believed she was there for the purpose of helping others learn about leukemia. Lisa was a brilliant woman. She documented her journey to help others. We discussed the science of her being refractory. We joked that we were both members of the aggressive club. Even though I was 17p deleted (high risk) and she was not, we joked that she may have me beat.  She was hopeful and a positive spirit.

I just had a fleeting memory come through my mind. A couple years ago she made me some beautiful handmade jewelry. She mailed it to me just because. You see Lisa was a really special spirit. She shared her heart and mind. I will never forget her.

Thursday morning I am headed on a plane to National Institutes of Health in Bethesda, Maryland for my quarterly medical team checkup. I will be thousands of miles in the air and be landing just about the moment she is laid to rest. I will be thanking God that he put such a lovely human being in my path of life. For that I am forever grateful.

Her children Joran Minkove and Hera Minkove wrote the following:

“With the heaviest of hearts we regret to announce the passing of our mother, Lisa Minkove. She courageously looked cancer right in the eye, never once gave up hope and was a shining example of grace and positivity for those around her enduring the same- especially to her wonderful friends. She had an online support group of over 900 women with the same or similar cancers who she would offer advice and do research for. This group has been her passion and the women she met through it have become some of her closest friends.

Funeral Services will be held on Thursday April 12th at 1pm at Herzl Memorial Park at 16501 Dayton Ave N Seattle WA

In lieu of flowers, please send donations to the Leukemia and Lymphoma Society or Chabad of the Central Cascades.”