CLL/SLL Resources

Here are some resources for patients and caregivers:

http://www.cllsociety.org

CLL Society

Dr. Brian Koffman

Note: Dr. Brian has CLL del 17p and has been on ibrutinib (IMBRUVICA) a few months longer than me. He is a patient of Dr. Byrd at The Ohio State University. Dr. Brian was a family doctor in southern California.

http://www.patientpower.info/

Patient Power

Andrew Schorr

Note: Andrew was one of the first to participate in Dr. Michael Keating’s FCR trial. He has successfully been in remission for a couple decades. His background was in medical writing.

Here is my page: http://www.patientpower.info/video/dr-la-verne-abe-harris-i-live-in-the-here-and-now

My blog:

http://drlaverne.blogspot.com/

La Verne Abe Harris, Ph.D.

Note: My journey with CLL

Fiscal help to access IMBRUVICA:

YOU&i™ Support Program

http://www.imbruvica.com/youandi

To learn more about patient enrollment and eligibility, visit youandisupport.com.

You can also call 1-877-877-3536, Monday through Friday, 8 am - 8 pm ET

Note: It ended up being $10 a month for one of the patients I helped get access. She had commercial insurance as the primary prescription insurance. I called and found out that a patient who is under Medicare may also qualify for the YOU&I Support Program, as long as they have a commercial insurance as the primary prescription insurance. Great news!

Chronic Lymphocytic Leukemia ACOR ListServe:

http://www.acor.org/listservs/join/39

3 years and 3 months on IMBRUVICA

I am back from the National Institutes of Health (NIH) in Bethesda, Maryland with continued good news on my use of IMBRUVICA (a.k.a. ibrutinib, PCI-32765). I remain in clinical complete remission since January 2015. My blood work is within the normal range and the medical team is happy with the results. Just to remind you, I have now been a participant in the NIH clinical trial for three years and three months with CLL/SLL with del17p and p53 mutation (the poor prognosis). 

I had lunch with two of the other lab rats (George and Betty), and then had vegetable tempura with my cousin Sam, who works for NASA in DC. I strolled by the admissions aquarium to make sure the clown fish couple were still living in the shell, got big hugs from Drs. Adrian Wiestner and Mohammed Farooqui, and got to giggle over a photo of Dr. Mohammed’s 5-month old baby boy, who apparently does not like to sleep at night. Susan, the research nurse got a great new haircut and was laughing about my stand-up comedy routine video. The nurse from India, who took my vitals, had a discussion with me about the pros and cons of arranged versus American marriages. I had a conversation with the shuttle driver about the outlandish costs of housing in Bethesda and how normal folks have such a different perspective of life and money. I sat outside on the patio and smelled the fresh air, chuckled at the people rushing to who-knows-where, and just smiled.

Four Women: Fernel, Bernice, Erika, and NaNa Anna

One of the things I have taken up since I have been in clinical complete remission is stand-up comedy. What a peculiar thing for a computer graphics technology professor to do! It was on my bucket list and now I am hooked. So far I have done two performances and have enjoyed making people laugh as MaMa La Verne. 

 My very own mother made me laugh a lot. Her sense of humor was contagious and I remember how it made me feel. My mind has been wandering lately (not unusual for me) and I thought back to the time when I was only 37 years old. I lost my beautiful mother then because of cancer. This got me thinking about the mother figures in my life. I can think of four lovely women – Fernel, Bernice, Erika, and NaNa Anna – who have made an impact on my life.  Oddly enough, they are all widows and have lost the loves of their lives, yet they make me smile and make me happy to be a woman.

Fernel is one of the most grateful human beings I know. I painted her wooden cane with colorful graphic patterns after she told me it was such a boring thing to look at. You would have thought I gave her a million dollars. Fernel is so full of sweetness, love, and gratitude. When you meet her, you just want to take her home with you.

Bernice is the rock. She is the voice of reason. She is the sensible foundation. I feel very grounded when I am with her. She makes order out of chaos. She makes you feel safe. Her faith surrounds you.

Erika balances the worlds of the dreamer and the realist. Her favorite word is “imagine.” I hum a little John Lennon when she is around. LOL. Erika dreams, yet also sees reality for what it is. She has persistence and keeps on keeping on. She helps me see balance.

NaNa Anna is brilliant and warm. She makes my heart feel loved with the twinkle of her eyes. With a smile on her face she can debate about any contemporary issue at the age of 90-plus. She makes life fun and engaging.

I miss my mother every day. I realize that these four incredible mother figures have touched my life for a reason. They have given me what I miss from my mom.

Laughter is such a beautiful thing. Taking life too seriously is not good for the body or the soul. Life is too short. Enjoy every minute you have on this earth, because life is good.

Normal and Unremarkable

I have never been so happy to hear that I am “normal and unremarkable;” in fact, I have never been called “normal and unremarkable” in my lifetime! LOL.

I feel a little banged up from being poked and prodded at the National Institutes of Health (NIH) in Bethesda, Maryland, but I am fine. My marathon medical tests for chronic lymphocytic leukemia (CLL) began at 7:30 am EST. My husband Carl was a little concerned because my blood tests (17 test tubes) seemed to take more than twice as long as the other patients. He had one of those worried faces in the lobby, but was relieved when I told him the phlebotomist and I were having an animated conversation about the USA Women's Soccer Team.

The results of my blood work were “normal.” My white blood count is 7.51k, and the normal range is 3.98-10.04k. My absolute lymphocyte count is 1.54k. The normal range is 1.18-3.74k. My platelets were a little low (154), but the doctor said that as long as it is over 100 there is no concern. The normal range is 173-369.

Then on to the CT scan. I unfortunately have crooked veins and am a hard stick. I am a little black and blue from multiple sticks, but managed to get through the scan easily. Last time one of the women in the front desk added Chrystal grape flavor to the liquid concoction and it was easier to drink. This time it tasted like burping up old sausages to me.

I have a few lymph nodes in my underarm that are small and not concerning. All my organs of my body are “unremarkable,” which is very good news. No evidence of developing soft tissue mass, organometallic or adenopathy.

Then off to the bone marrow biopsy. I was trying to remember how many I have had. I think this is my ninth one. The sting of the initial local anesthetic (Linocane) is usually the only discomfort I feel; that is, if you have an experienced person doing the biopsy.

I had one bad experience at another medical facility. Before the nurse went in for a third time, I told her that if she was going in one more time that she needed to make herself useful and suck up some of my fat while she was at it. It took her a while to compose herself.

The anxiety of the biopsy is usually the biggest issue with most patients. Some of my blood brothers and sisters have requested Vicodin or a comparable pain reliever before the procedure to take the edge off. I requested a glass of red wine and some dark chocolate. NIH did not accommodate. They said this was a government agency and no alcohol allowed on the premises. LOL.

Most bone marrow biopsies take 15 minutes. This time mine took one hour; apparently, the needle kept slipping on my left hip bone. The procedure is similar to drilling a screw in the wall through a stud. You make a small hole with a nail first. Then you use that hole to screw in the screw. It took several tries to drill a hole that the "screw" could find. The attending nurse was trying to converse with me to distract me. I told her that I just wanted to take a nap, so I did my Lamaze breathing and tried to sleep through it. I was the sixth BMB for the PA that day. I was a little sore afterwards, but it doesn't last long. Carl brought me red wine and chocolate back at the hotel. That was something I really appreciated. He even brought me an Italian dinner that evening.

Ibrutinib (IMBRUVICA) seems to be working well for me. The results of my bone marrow will come in about three weeks. The medical team is optimistic that test result should verify my continued clinical complete remission.

We talked to the medical team about several upcoming clinical trials. A combination of ACP-196 (a kinase inhibitor) and a monoclonal antibody checkpoint inhibitor is being tested. Nivolumab, a monoclonal antibody (just FDA approved for melanoma), is being tested on CLL/SLL. Dr. Mohammed Farooqui said that chimeric antigen receptors (CAR-T) trials have shown more success with ALL than CLL/SLL.¹ I was hoping that would be my cure.

Of the 32 patients in the arm of the trial with 17p deletion (the arm I am a participant in), only two have progressed with the cancer and taken off the drug. The longest patient in the NIH trial on ibrutinib has been on it 3 1/2 years. I have been on the drug for three years.

No one knows how long ibrutinib (trade name IMBRUVICA®) will keep me in complete remission. It is working well for me now, and I am grateful for that. But it is not intended to be a cure. At some point I will relapse, so I need a Plan B. FDA has approved of a combo of rituximab (trade name RITUXAN®) and idelalisib (trade name Zydelig®). This can be administered by my local oncologist and will act as a bridge until the medical team at NIH can find another clinical trial for me in the United States, if there is not one at NIH in which I qualify. NIH has working relationships with a number of places in the United States that have clinical trials.

So until then I will live each day and surround myself with the people who make my life beautiful.

1 http://www.uphs.upenn.edu/news/News_Releases/2014/10/ctl019/

Laughter is the Best Medicine

Last night I went to a comedy club with my husband Carl and my daughter-in-law Elizabeth’s Aunt Lucy. It was an extraordinary moment when I realized that for those two hours I did not think about anything but trying not to pee in my pants, because I was laughing so hard. Lucy pointed out that it was rather ironic that we were sitting in the audience with our glass of wine listening to the Insane and Sober comedy concert.

I have always loved going to stand-up comedy and improvisation shows. One of the things on my bucket list is taking comedy classes, so I signed up for the beginning session of scriptwriting at the Tempe Center for the Arts. Tony Vicich, my stand-up comedy coach, is teaching us the art and technique of writing jokes. It is a lot more difficult than most people imagine it to be. I am the only female in the class and definitely the oldest. The others are males – ages 17, 40, and the rest are in their 20s. They are clever and adorable and I have such respect for their efforts. Some of them make up their jokes right before class, while I spend hours on mine. Last assignment I wrote 36 jokes, but selected only 13 that were worth repeating.

When I started to get discouraged, my friend Addie told me that I have a lifetime of experience to draw my material from. I thought about that long and hard. She is right, you know.

One of the topics I can’t really joke about to a general audience is cancer, because it would horrify them. But there are so many things about being diagnosed with cancer that has made me laugh. Having a sense of humor and a child-like wonderment of the world has helped me get through my journey. I think I love to laugh, because if I take myself and life too seriously, I might not be able to stop crying.

So how does laughter help a cancer patient and caregiver? First of all, laughter is a part of the universal human vocabulary. Scientifically speaking, it produces endorphins, which produce positive feelings and inhibit the transmission of pain signals. There is evidence that 10 minutes of deep belly laughing has the numbing effect of giving patients two hours of pain-free sleep.¹

There are so many benefits to laughter, especially for the cancer patient and caregiver. Laughter is a paradigm shift. It can help in the healing process. Laughter is contagious. It connects people to each other. It strengthens your immune system, and is an antidote from the negative effects of stress, anxiety, fear, and conflict. Laughter relaxes your body and protects your heart. It is free. Laughter is the best medicine.

P.S. Here is a video of my granddaughter Grace. I play it almost every day, because it gives me such joy.

1.     Cousins, N., Anatomy of an illness as perceived by the patient: reflections on healing and regeneration, NY: Norton, 1979.

RELATIONSHIP EXPECTATIONS = What you expect from others in your personal life when you are diagnosed with cancer

“If you can’t change the circumstances, change your perspective.” ~Unknown

When you are diagnosed with cancer and you are dealing with the fears, the struggles, the disappointments, and the confusion, you feel pretty vulnerable. A good friend or family member is often the best medicine. But what happens when those friends and family members do not give you what you expect? Relationships change when a crisis happens. Some people gravitate closer. Some disappear from your life.

I believe it is especially difficult when a cancer patient is dealing with years of struggling with cancer. You are not the only one who gets tired of it.

According to psychologists, you teach others how to treat you. That makes sense, but I am still personally working on this. It’s important for me to treat others with the kindness, attention, love, and respect I would want for myself, but I am still a work in progress. I know that healthy expectations include being respected and being treated well. When these expectations are broken, we naturally feel angry, sad, used, and hurt.

What I have learned in my life is that if you expect others to act a certain way, assume anything, or force change on the behavior of other adults who are stuck in their own quagmire, plan on being disappointed. You cannot expect out of others what they are unable to give. You cannot expect others to treat you in the same manner you would treat them, because they own their own emotions, behaviors, and worldview. Just because you would not behave a certain way, does not mean they will not. They alone are responsible for what they do.

I have had people in my life who have unfortunately revealed their true colors to me in this journey of cancer. Rejection is probably one of the most difficult things to come to terms with. When we think we have a relationship with someone, and we care about the person, it is easy to assume the person cares too, and would respond as we would.

When the person turns his back and walks away, that is in the least … very disappointing. This situation has a direct affect on the state of your body and your emotional wellbeing. It hurts. Your attitude shift needs to happen immediately for your own sanity. What you are left with is the control of your own attitude.

This is what you have to do:

• Change your perception of hope … to being open to the reality of the situation.

• “Let it go,” as Ana and Elsa sing in the movie Frozen.

• Live in the present, not in the past or a fantasy world of what could be.

• Look at them not with resentment, but with compassion. They cannot give you what they are incapable of giving.

• Reach out to cancer support groups. It is amazing how strangers can become friends.

• Be grateful for those friends or family members that are able to give you parts of what you need. Some people are good at spending time with you and going to the doctor with you, others cannot handle that and would prefer to take you out for a fun time. Be thankful for that.

• Look around you at the people who make you feel loved, and worthy. Focus your attention on those angels in your life.

• Forget about being validated or approved. It will only make you feel empty when people do not act the way you hoped. Remember, you cannot change others. It is up to them to change.

• Give yourself what you need.

• Walk away from the toxic situation, if it is best for your health. As my friend Addie says, “Not my circus. Not my monkeys.” It’s a Polish idiom.

Live your life in gratitude and love. Wake up each morning and count your blessings.

-- Dr. La Verne

Fear Busting

Being diagnosed with cancer has a way of making us vulnerable to our own mortality. It brings about the fear factor. Many of our fears in this journey are valid and many are unfounded and cause a lot of misery in life. Today I thought I would tell you what I have learned about being faced with a fearful situation.

If we are faced with a potentially dangerous situation – emotionally or physically – fear kicks in. This response is the way we as humans protect ourselves from life-or-death situations -- real threats. The key words are “real threats.” But many times FEAR is “False Evidence Appearing Real” (Garcy, P.D., 2013).

Regardless whether fear is real or imagined, it still has the same effect on your body and your mind. To some, fear is emotionally and physically paralyzing, and the ability to rationally process information is lost. To others, personal demons and patterns of habitual thinking trigger responses that result in unnecessary anxiety and a series of “What ifs?” Others who hide their fear often go on the attack.

I personally avoid making potentially life-changing decisions if I am in this state of mind. I focus on calming myself. I breathe through my nostrils and into my belly and out through my mouth. I meditate and pray. I focus on the here and now, not on any future event that may or may not occur. I tell myself, “STOP!” and I focus to prevent my imagination from going wild. I calm myself.

Then I ask myself, “Do I have any control as to the outcome of the situation?” If no, then I have to let it go.

Then I ask myself:  “What are the facts?” “What is the worst-case scenario?” “What is my plan?”  “Who can help me?” There is always a plan to be made and always resources to be found. The best time to make this plan is when you are calm on the inside and thinking rationally. Even not doing anything is a decision. I make at least two options: Plan A and Plan B. In my life, there is often a Plan C. When I am faced with a stressful situation, I have plans in place. If Plan A does not work, I go on to Plan B. The best option is to be proactive and have these plans in place before a crisis occurs. Yes, I know… in a perfect world.

It helps me to find even the smallest increment of the situation that I can face without anxiety. I say to myself, “I can do that!”

After I take care of that small piece of fear, I ask myself, “What other small step can I do to work my way through this dilemma? I find that for me it is achievable to work my way through a situation in small pieces. That way it does not become emotionally overwhelming.

Many times when people are anxious they avoid doing tasks that appear to be challenging, because of fear of failure. Again, take baby steps. Stand tall and confident. Make your body control your mind. The thoughts that enter your mind have a direct effect on turning around the fear factor.

I wake up every morning and count my blessings. I am so grateful that I have the honor of this day. I am not going to waste it being afraid of everything that comes my way.