By Keith Seagull – Patient
I am Keith Seagull from Ontario, California, about 40 miles east of Los Angeles in what is known as the Inland Empire. I was born and raised in Milwaukee, Wisconsin – Midwest frozen tundra!! I have been a California resident for the past 42 years.
I enjoy sharing my 16 year journey as a cancer survivor with Chronic Lymphocytic Leukemia (CLL), a B cell blood cancer – diagnosed on April Fools’ Day, 2004.
I am extremely indebted to researchers, whose dedication to curing CLL is the reason I am alive and well today. Researchers and patient advocacy and education groups like the CLL Society make a difference in the lives of suffering people and it has made a huge difference in my life and my family’s lives. I have now been on single-agent (monotherapy) Venclexta for more than 4 years, as of May 2020.
I am a self-employed attorney. Wait a minute…is it worthwhile to save the life of an attorney you may ask yourself? Just kidding! Specifically, I represent injured workers in the California Workers Compensation system as well as representing disabled children and adults before the Federal Social Security Administration. This gives me Soul Satisfaction – it has been my passion for 30 years now. Because of medical breakthroughs, I can continue to do this work. Seven years ago, I met the criteria for disability because of CLL and I could have obtained and stayed on disability for the rest of my life and never work again. I am grateful that I did not pursue that and was not forced to pursue that path due to CLL.
I have enjoyed sailing most of my life, on Lake Michigan and on the Pacific Ocean. I love nature, taking photos, watching ice hockey, walking in the mountains, and amateur astronomy. It’s nice to STILL be alive!
Who is most important in my life?
My daughter, who is now age 22, and my mom, who has been my caregiver, my rock through all of this. My daughter graduated from college June 2020, with a double majoring in English and PoliSci, cum laude, a member of 2 international honor societies, Phi Beta Kappa (like my mother) and Pi Gamma Mu, and she wants to become an attorney and possibly work in government. I saw her attend her high school prom, homecoming, high school graduation and learn to drive. I am very blessed to be alive – she was only 6 years old when I was diagnosed in 2004, and I was told at that time that my life expectancy with CLL was 6 to 7 years, which meant I would not see her graduate from 8th grade. She appreciates my advice and presence in her life. Sasha and I attended my mom’s graduation August 2017 with a doctorate (PsyD) in psychology. My friends, relatives and fellow believers who pray with and for me are important. I can’t live without my faith as a Christian – it got me through this CLL ordeal.
Let me tell you HOW I was diagnosed in 2004:
The first signs that something was wrong with my immune system were a couple warts – one on a little finger and one on my left thumb that became the size of a dime. Nothing would kill the warts so I went to my GP in late March 2004 and her assistant gave me 2nd degree frostbite trying to freeze my thumb wart. While there, I had a routine blood test that showed my white blood cell count was 22,000 per microliter. Normal is about 4,000-10,000. Because of the 2nd degree frostbite, my GP put me on an antibiotic – Augmentin XR, which my body did not like, and within a few days my spleen and liver had swollen significantly, and I was in extreme pain. I went to a another doctor friend (not Dr. Freeze) and he immediately sent me to a local General Hematologist/Oncologist – THIS WAS APRIL 1, 2004 – April Fools’ Day – I went with my 6 year-old daughter, my (then) wife and my mom. I was in severe pain and I was very scared.
The General Oncologist did a detailed blood test – the white cell count was now 55,000 – He found CLL markers such as CD5, CD19 and CD20. TO MY HORROR, he and his assistant doctor proclaimed that I had Leukemia – Chronic Lymphocytic Leukemia. I WENT NUMB. Of course, I had heard of leukemia. I never knew anyone with it. I cannot describe the Numb, Surreal feeling that came over me. This is not possible – I WAS ONLY 46 YEARS OLD. I would not accept this diagnosis – I said, “this is April Fools’ Day – this is a joke, right?” The answer I got was “No, this is not a joke, this is real. You have cancer, Chronic Lymphocytic Leukemia.” Then, he said, “don’t worry, you have the ‘good cancer’. It won’t kill you right away; it will take a few years.” When he then said, “I can cure you right now”, I knew this was not the truth. I had no confidence in him.
What was I going to do? My daughter was 6 years old and I didn’t know if I would still be alive in one year. I wondered if I would live to see her graduate from 8th grade. I had to do something else. I researched CLL and CLL experts online – thank God there was an internet in 2004! I was convinced that I needed to see a specialist in CLL. I prayed an awful lot for God to help me. You must advocate for yourself and do your own research (and now in 2020 there is help like the CLL Society) – this is your life. This was my life and I had to save my life. The stress was unbearable during the first few months. I was prescribed Ativan for the stress.
From my own research, I found an internationally recognized CLL expert – Dr. Thomas Kipps at UC San Diego Moores Cancer Center and went for an initial consultation in August 2004. Testing revealed that my CLL was of the 13q deletion variation – a slower, more indolent version of CLL. The best treatment option available in 2004, even with Dr. Kipps, one of the world’s leading experts on CLL, was FCR, a chemotherapy combination of fludarabine, cyclophosphamide and the monoclonal antibody, rituximab. I read what I could about FCR and I did not like it. I learned that chemo damages the bone marrow and the DNA. Dr. Kipps did not push me. I had time, as long as my white count stayed under 100,000. He respected me as a patient and that I did not want chemo or radiation. He talked about his hope for a CLL vaccine in the future. I decided to explore non-traditional treatment options. I kept drinking green tea which I came to like in 1985 on a trip to Japan and later found out it contains EGCG (epigallocatechin gallate) that may help fight CLL. Mayo Clinic ran a clinical trial with EGCG. I found Reiki, a Japanese healing energy session, and became a Reiki master.
Prayer, positive mental imagery, relaxation and meditation help. I went for acupuncture treatment which worked for my lower back, then added traditional Chinese herbal medicine, which worked to keep my blood values and spleen under control until late 2013. I chose Chinese medicine because it’s been around for thousands of years and it works, without the side effects of Western chemo medicine that include bone marrow damage and DNA damage.
I took lots of vitamins and supplements. I kept periodically returning to Dr. Kipps and he said to “keep doing whatever you are doing – it’s working.” I also consulted with doctors at the City of Hope and UCLA and they told me the same thing. I did have a very enlarged spleen and enlarged lymph nodes during this whole time.
Meanwhile, I tried to live a “normal” life. I never missed one field trip with my daughter in grade school; I loved every trip with her. I sailed the Baja Haha Race 1,000 miles to Cabo San Lucas, Mexico with friends. I raced in the Newport to Ensenada race, the Border Run to San Diego, local yacht club races and trips to Catalina Island.
By late 2013, Chinese medicine could no longer control CLL’s symptoms or keep my white count below 100,000. My spleen, which belongs under the left rib cage, now lower than that, was huge. It extended 2 inches below my naval and pressed on my internal organs. I was uncomfortable and in pain.
By Thanksgiving and Christmas 2013, I was in pain day and night and could only eat half a dinner. My weight dropped to 156 pounds. Now I’m 20 pounds heavier. My BMB (bone marrow biopsy) in December 2013 showed that I not only had Stage 4 CLL cancer, but that I had 95% cancer in my bone marrow; I was very close to the end. But I kept working 60+ hours a week. My new GP in late 2013, Dr. Brian Koffman, a fellow CLL survivor who recently went through successful CAR-T therapy, likely helped save my life by strenuously urging me to go back to see Dr. Kipps. Dr. Koffman co-founded the CLL Society with his wife Patricia Koffman in Newport Beach, CA, a nonprofit CLL patient advocacy and education organization. He has an amazing story to tell: a failed bone marrow transplant, 6 years on Imbruvica and finally in March 2018, a difficult but successful CAR-T therapy in Seattle.
My very first Western medicine treatments were in January, February, and March 2014. They consisted of about 10 days of non-chemo infusions of HDMP (high-dose methylprednisolone) and Rituxan (monoclonal antibody). (I learned to pole dance to/from the bathroom with the IV pole. LOL – don’t know where the pictures went!). The hope with this FIRST Western treatment was that possibly I could avoid further treatment for 18 months. BUT just 2 weeks after those 3 months I was back to square one and my heart sank – this was very depressing. Dr. Kipps and I with my family agreed on Idelalisib/Zydelig (Pi3k inhibitor) Extended Access Trial, oral pills. It was great for JUST 6 weeks starting August 2014, until I was taken to the ER by ambulance with simultaneous vomiting and diarrhea (30 times over 4 hours). I thought I was going to die – I was scared. The diarrhea lasted 36 hours. Asking a nurse to change my diaper in ER twice was very humiliating – God bless her. Idelalisib temporarily, adversely affected my liver functions with elevated AST and ALT and a severe skin rash.
Next, with Dr. Kipps, we agreed on Imbruvica (BTK inhibitor) and began the Phase 3 Trial in October 2014 which lasted 17.5 months until April 11, 2016, when I was taken by ambulance to the ER with severe A-fib (atrial fibrillation). I’ve never experienced it before or since. I was in ER and the Cardiac ICU for 28 hours. Three cardiologists didn’t know what to do for me except to treat with a Cardizem IV drip for 12 hours. Neither the doctors nor I knew if I was going to live for the first 12 hours. I was scared and my heart rate was irregular, up to 150-160 bpm with no normal rhythm. They asked if I wanted to be resuscitated if my heart stopped. They suggested stopping it, then hoping to restart it, an ablation, a pacemaker – they had no idea what was causing the atrial fibrillation. I kept telling them it was Imbruvica as A-fib is a known side effect of Imbruvica. I MADE them call Dr. Kipps’ office at UCSD. Imbruvica gave me a LOT of fatigue. It’s scary to fail a drug or have your body stop tolerating a CLL drug. CLL wants to kill you – it’s not kidding.
Next, Dr. Kipps and Dr. Michael Choi at UCSD suggested ABT-199/Venclexta – a Phase 2 Clinical trial – we said “YES”. I qualified after multiple MRIs, radioactive PET scan, echocardiogram, etc. and began ABT-199 on May 17, 2016. I had to stay a few days every week in a hotel near UC San Diego for 5 weeks in a row to begin ramping up with ABT-199 from the initial low dose to higher therapeutic doses in order to avoid the possibility of deadly Tumor Lysis Syndrome (TLS). This involved rearranging my work schedule because UCSD is over 100 miles from my house. I eventually went down from 4 pills a day to 2 with the same therapeutic results, because I didn’t need 4 pills and, also to reduce the side effects. I did not develop TLS, thank God.
By October 2016, per the 4th BMB results, I achieved MRD-negative status, which is the equivalent of remission in other cancers. (leukemia -MRD negative – minimal residual disease negative). MRD-negative was declared after the AbbVie lab in Chicago counted 1.4 million bone marrow cells, and they only found 17 CLL cancer cells. What a miracle. That’s 0.001%, or 1 thousandth of 1 percent cancer in the bone marrow. – an astronomically small amount of residual cancer. Remember that in December 2013 I had 95% cancer in my marrow (that’s like 1.33 million cancer cells out of 1.4 million marrow cells); yes, that is an incredible miracle!! Side effects have been diarrhea to this day, now 0 to once a week. In fact, from every treatment I’ve had including Chinese medicine, diarrhea occurs now 0 – 1 times/week usually a couple hours after dosing after dinner, and now only rare nausea. Imodium has become a very good friend, and Zofran. A small price to pay for MRD-negative!! I have NOT had another BMB since October 2016 since the drug companies Abbvie/Genentech do not find it necessary and I do not want to incur the cost of paying on my own. Testing for MRD-negative includes regular venous blood draws and extracting bone marrow from the back of the hip bone while lying on your stomach. The October 2016 BMB was performed at the request of the Trial Drug companies AbbVie/Genentech after five months of treatment and showed fairly, normal CBC (complete blood count) results as far as white and red blood cell counts.
I was given a choice to stop Venclexta altogether a couple years ago by Dr. Choi, because it was learned by then that the beauty and uniqueness of Venclexta is that you can stop it and restart it if symptoms return, and it still works! You can’t do that with other CLL oral agents. However, if I had to restart the drug, it would no longer be paid for through the clinical trial, (at NO cost to me) and I really feared what my co-payment might be and whether I could afford it, (from $10 to possibly up to $2,000 per month). My private health insurance could not or would not tell me, and I was permitted to remain on this drug as part of a long-term study for long-term side effects. I am now on Extended Access with about 2 years to go since the Phase 2 Trial of this highly successful drug, Venclexta, is now over.
I feel pretty normal and healthy; I walk about 2.5 miles per day and work full time. My blood counts, white, red, hemoglobin, etc. have been pretty normal. I still have low platelets, which were 70,000 – 90,000/microliter last year, now over 100,000, and lower immunoglobulin, which has been that way for many years.
On clinical examination I have NO palpable lymph nodes or spleen! My last full body MRIs in 2017 were clear of lymph node enlargements.
I don’t mind taking my Venclexta every day; I never missed a dose. Millions of people take pills daily for high blood pressure, heart problems, diabetes, etc. Taking pills every day is no big deal. Again – “A small price to pay to keep CLL away!!”
My hopes for the future – I look forward to being here for my daughter –her plans for law school and another graduation and her future, and hopefully my re-marriage (when I find someone). Being able to share in her life and in my mom’s life, relatives, friends, clients. To continue to help people, my disabled/injured clients, to enjoy friends, life on this planet. Such a blessing!! AND, I WANT TO TRAVEL – I could NOT do that confidently all these years. I visited France and Poland in the summer of 2019 and found some ancestral roots. I hope to travel more after the pandemic ends.
Clinical trials are awesome, this is my THIRD. I highly recommend them. You get the latest, greatest treatments and the best, closest monitoring and medical care FREE OF CHARGE – why not participate in them?
I started Venclexta May 17, 2016, more than 4 years ago. That is amazing!!
I am Grateful beyond words for the doctors, people and drug companies responsible for saving my life and for restoring my health. I do believe in miracles – God works through others – God works through Us – thank you CLL Society for allowing me to share my story.
Keith, a native of Milwaukee, WI, lives east of Los Angeles, is a lawyer representing injured workers and disabled adults and children. He was diagnosed with CLL 16 years ago and never stopped working full time and thankfully is MRD negative since October 2016. He enjoys sailing, walking, amatuer astronomy, helping others and learning.
Originally published in The CLL Society Tribune MRD Special Edition.