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.