The CLL Patient Advisory Board was assembled to advise the society to ensure the views of patients, caregivers, and potential clinical trial participants are represented. Its mission is to help address the needs of the patient community for up-to-date and unbiased educational information on CLL in order to enable patients and caregivers to become knowledgeable advocates and active participants in their own care.
In June, 2000, through a routine blood test I was diagnosed with Chronic Lymphocytic Leukemia. I was watch and wait for over seven years. During this time I had blood tests every six months, and check-ups by a very qualified local hematologist to make sure I didn’t have any other ‘B’ symptoms like swollen lymph nodes, night sweats, fatigue or weight loss. During those seven years I had minimal symptoms and the major issue was my increasing white blood count (WBC), which by September 2007 had increased to over 500,000. People with poor prognostic markers, like 11q deleted 17p, ZAP 70 positive, and unmutated have a much poorer prognosis. I have ALL of these makers and here I still am. Based on OLD statistics I had about 5-7 years of life left when I was diagnosed in 2000. Now, 17 years later I am still going strong, and expect to be here another 17.
The date of CLL infamy arrived on May 16, 2014, at the office of my first hematologist-oncologist as he read the results of my flow cytometry and FISH studies. This visit followed the discovery that my white cell count was moderately elevated at the time of my annual physical the month prior. Physically I felt absolutely fine and but was taken by complete surprise that I had cancer. I deflected my shock by joking to my doctor that “Cancer doesn’t run in my family. It doesn’t even walk.” Um, well, now it does. This hematologist referred me to the venerable CLL specialist Richard Furman, MD, in New York City (where I was then living) who redid the flow and FISH studies plus a slew of other related cytogenetic tests. I was 13q deleted with a splash of Trisomy 12 and negative for everything else. I was asymptomatic and thus escorted into Watch & Wait purgatory where I remained for 3 years. In the course of my online research I luckily stumbled into Brian Koffman’s CLL blog and made contact with him, apprising him not only of my new diagnosis but also my imminent relocation to Los Angeles. We met in person at the first CLL Society Patient Education Forum at City of Hope Hospital where I enlisted myself as the group facilitator for the just-forming CLL Society Los Angeles support group. At the forum I was also introduced to Dr. Steven Rosen, MD, who was to become my CLL specialist. A drop in my platelet count below 100 led to a bone marrow biopsy which led to the decision that the time for treatment – Imbruivca plus Gazyva — had arrived. My results were rapid – my white counts returned (and have remained) normal after my first infusion. I had a total course of 11 cycles (yes, 11!) of Gazyva and am presently remaining on a maintenance course of Imbruvica, though I was given the option to terminate treatment. Hoping for a very long and durable remission.
My journey with CLL/SLL began in 2016 during an ultrasound of a thyroid nodule. I was referred to a Hematologist, placed on watch and wait with follow-up visits every six months. Over the next several years visits changed to every three months as I started experiencing severe fatigue and night sweats.
In December of 2019 I woke up with numbness on the left side of my face. After a virtual visit with my PCP, I was encouraged to go to the emergency room. There, I underwent a CT Scan, MRI, and blood tests. My symptoms persisted and several days later I was admitted to the hospital and immediately began treatment (MTX and Rituximab) for CNS involvement of CLL/SLL. I am currently being treated with ibrutinib and am tolerating it well.
I am fortunate to be a part of the Denver CLL Support Group where I receive support, gain knowledge, and share concerns and experiences with my fellow CLL’ers.
I am 71 years old and have some medical background from the military. My wife was diagnosed with CLL in 2018. She has RAI stage 0, 13q deletion and has been in “wait and watch” since that time. The CLL society group has been a “Godsend” for us. We are facing this situation with education and insight that we would not otherwise have.
I was diagnosed with CLL in March of 2006 with a WBC of 47,000, and I am unmutated with Trisomy 12. After diagnosis my lymphocyte count doubled in five months, and my lymph nodes and spleen grew rapidly. I needed treatment sooner than later. I opted to be treated in a clinical trial of Rituxan (double the typical dosage) and HDMP. This treatment quickly put me into a very good remission. However in the spring of 2007, even though my CLL was well controlled, I developed ITP. ITP is an autoimmune problem that causes very low platelets. Since 2007 my CLL story has really been about treating my ITP. At times managing the ITP has been very challenging, but it is currently being controlled with cyclosporine. Meanwhile my CLL still remains in remission.
I became a CLL caregiver in 2006 when my wife Barbara shocked me with the news that she most likely had CLL. It was hard to believe, since she seemed to be perfectly healthy. We quickly went online, seeking more information about CLL, and we learned as much as we could. We actually learned a lot, most importantly to find a CLL expert to oversee and treat Barbara’s CLL. We took this advice to heart, and finding a CLL expert was the first proactive thing that we did. Through CLL internet forums and message boards Barbara met other CLLers online. This eventually led to our finding and joining a local CLL support group in 2008. Several years later we continue to enjoy and benefit greatly from being part of this group.
I was officially diagnosed in December 2003. Prior to my diagnosis, over a 5 month period, I had three consecutive blood tests with elevated WBC. When I saw the hematologist in November, he did a Flow Cytometry to confirm what he suspected. On my return visit in December, I was officially diagnosed with CLL. I was treated in 2005 with FCR. I had a 5 year remission. In 2010 I was treated with BR and did not tolerate the Bendamustine well. As a result, I had a half dose each month. After 1½ years my counts started rising rapidly. Determined not to do chemo again, I enrolled in a clinical trial with what is now Zydelig and Ofatumumab. Not tolerating the study drug, I finished the study with only Ofatumumab. Following the clinical trial, in March of 2014, I began taking Imbruvica.
I am currently a Senior Support Group Advisor for the CLL Society; I’m enjoying meeting new people, helping to mentor facilitators and start new support groups around the country.
My CLL journey began in 2018 with a routine visit to my dermatologist, a physician I have known for years. When I complained about being tired, she sent me to the lab for some bloodwork. A few days later, while at work, I was checking my voicemail on my phone, and there was a message where she told me I had CLL — but not to worry as she had another patient doing well with CLL. More importantly, she had already made an appointment for me with a CLL specialist right there at Duke. Initially, I had no understanding of the disease, such as its short- and long-term effects. The years since that message and first visit with the specialist have been a continuous learning process. I am on “active observation” with no treatment to date. In addition to learning from the great team at Duke, I searched out reliable information online and found the CLL Society. I read many of the links and info pages and signed up for the only patient group in North Carolina. In 2019, I began making the all-day trip to Charlotte once a month (3 hours driving each way) because I found the group there to be friendly and knowledgeable — and open about their own life journeys with CLL. My wife joined me several times as care partners were welcomed. We were pleased when the society announced that a group would be formed in the Raleigh area, closer to our home. I volunteered and was honored to be selected as a co-facilitator for the new group, along with Lora Cox. We had our training in California in January 2020, and joined in a patient group session there with Dr. Koffman. Back in NC, we had just one meeting in person before COVID restrictions kicked-in. I am pleased to say that the online support group format has worked well — we have a core group of regulars and welcome new members often. I continue to be impressed with the dual roles for the CLL Society. By funding research and reviewing the latest science, the organization is working toward better diagnosis and treatment plans, thus serving the medical community and patients. At the same time, there is a keen focus on serving the patients and care partners, from the support groups to second opinion options, and attention to emerging issues, such as a global pandemic. I feel better prepared for my ongoing CLL journey because I am a member of the CLL Society.
Wilbur (Rich) Richburg
In June 2015, I bought an RV to spend my retirement years touring North America. Approximately 5 months later (October 2015) I found out that I had Chronic Lymphocytic Leukemia (CLL). Initial comments about the average mortality rates from oncologists that I spoke with varied from 4-10 years life expectancy. I’ve been on watch and wait for almost 6 years now. I’ve had regular 6 month check-ups by several oncologists/hematologists in Maryland and Florida. I got pneumonia (July 2016) and COVID-19 (July 2020). Over the last 5.5 years, I’ve had minimal symptoms; however, my white blood cell count continues to rise as high as 226,000. At that point, it started to go back down to as low as 143,000. My chromosomal deletion is 11q unmutated, which I understood to be a poor prognostic marker for predicting the length of time before treatment is normally required and the efficacy of certain treatments to reach and maintain a lengthy remission. Now, after finding out about the CLL Society and meeting other people who have lived more than10-30 years with CLL, I know the path forward is much brighter. I’m optimistic about the good luck due to come my way and those around me soon.
Christina Rodriguez Fuller
I was diagnosed in October 2018 after a couple of years of extreme fatigue. It had been about that long since I had a physical and I had some heart flutters concerning me, so I went in for a regular check-up which quickly led to the diagnosis of CLL. My heart is fine, so I am thankful for that. My journey led me to a local hematologist, then a CLL specialist in Houston before settling with a CLL specialist in Dallas where I am currently in the ECOG trial. I hope to finish the trial in September 2021 with positive results. My initial two doctors said it would be years before I would need treatment as I was a healthy woman, younger than most CLL patients and even though my markers were not great, they felt they were fine. Well, it did not turn out like that for me. But so far, the trial I am on is working positively. After spending some time online and finding a few CLL forums and groups I became more comfortable to attend a local CLL Society Support Group. We met a few times before the pandemic hit. I still find going online with “CLL people like me” has been extremely helpful to learn more, understand the doctors more, and feel supported. I know that being part of this group will be so beneficial.
In 2007, I noticed bruises all over my body and a big lymph node in my neck with slightly elevated WBC. However, these symptoms were dismissed by my physicians until 2009 when I was diagnosed with CLL by a new doctor. I have been on watch and wait status ever since. There were many challenges after my diagnosis and finally after changing doctors three times, I settled on a hematologist that I feel comfortable with and trust. At the time there were no patient support groups in Portland, Oregon so I attended the LLS Blood Cancer Conferences in California where they connected me with CLL Society. I was recruited by Mr. Bruce Wright to be a co-facilitator for a new patient support group and it was the best decision of my life. We’ve had great success with these monthly meetings and continue to help and support each other through many difficult situations during our healing journey. I educate myself by participating in many CLL seminars and by reading through countless research articles. I am grateful to CLL Society and their mission of educating and supporting patients with this troublesome disease. Rumi said it best: “What You Seek is Seeking You.” I am concentrating on my health and keeping a positive healing attitude in life by helping others, and myself in the process.
I began my walk with CLL 1n 2015 while being observed for Waldenstroms Macroglobulemia, (WM) (since 2005) a large slow growing B-cell malignancy. During an appointment with Dr. Castillo at Dana Farber in Boston Mass. a bone marrow biopsy presented an new separate condition, CLL. That became the overriding concern and I asked for a referral to a specialist in New York. He recommended Dr.Furman and/or Dr. Allen at Weil Cornell. I ended up with Dr. Allen and it has been a good match. A work up produced new issues, 11q del, unmutated and WM and CLL concurrently. Fast forward CLL eventually occupied 94% of the bone marrow pushing WM down.
Since retiring many times I find myself in AZ. When I am there I am seen by Dr. Leis at Mayo Clinic Scottsdale AZ. I am fortunate enough to have two physicians providing care. As you are aware Covid hit New York hard in 2020 and Dr. Leis and Dr. Allen said it was time to treat but not to return to NY. I was blessed by being in Arizona at that time and on my physicians advice stayed until August. We decided on Acalabrutinub as it checked many boxes that we all had concerns with. Now a year later blood counts are mostly within normal range with very minor exceptions with Iga, Igg and Igm.
My Introduction to the CLL society came as I was attending a WM (IWMF) meeting. It was a common space used on different dates for both organizations. It was not a hard or very thoughtful process to see the benefit of this organization in my life. It also has provided me with insight into many of the challenges patients face when navigating those treatment options many of us face. It was during one of the CLL Society meetings when I first met Dr. Koffman. I met him once again during a panel discussion at Sloan Kettering. I was impressed hearing his story. So now an opportunity presents itself as a chance to possibly give back. After much thought, I agreed.
I am a member of the CLL Society Patient Advisory Board: I was diagnosed with CLL on Sept. 11, 2006 and told I had a “good cancer” and as such, might never need treatment. Prognosis testing results from IGHV mutation status, FISH and CD38 all predicted an indolent disease course. The one test (ZAP-70), which CLL specialists dismissed as inaccurate, was 58% positive contradicting the other good markers. The rapid rate of tumor burden increase marked by bulky lymphadenopathy indicated I was discordant to the favorable markers. After failing 1st and 2nd standard therapy options I signed up for a Phase Ib Clinical Trial in June of 2011 with a new agent called PCI-32765 later branded Ibrutinib (Imbruvica). I have been on Ibrutinib ever since in remission currently stagnating with a small cancer cell population only detectable by sophisticated detection techniques.
I received a routine physical exam, for Agent Orange exposure, at the VA Hospital in 2009 and was informed that I had two cancers: Chronic Lymphocytic Leukemia (CLL) and Prostate Cancer (PC). I had to drive home through congested big city traffic on a motorcycle, all the time thinking – I have cancer! I do not know how I did it without crashing. I was told to Google CLL to learn about it. The PC was treated successfully via Brachytherapy and I began a five year period of Watch and Wait (Worry) for the CLL. During this period my WBC rose from a count of 20,000 to 194,000+, my spleen enlarged 19 cm as my RBC and platelet counts descended to minimum levels. I was most fortunate to be encouraged by Terry Evans to join our local CLL Support Group. This group is where I REALLY learned about my disease and took ownership of it. My numbers are 13q deleted, mutated, CD38 negative, ZAP 70 negative and bone marrow 90% CLL involved. My six month treatment protocol with Gazyva began in 2014 and completed in 2015. The results reduced the CLL marrow involvement to 17% and I was evaluated as in remission with Minimum Residual Disease (MRD)+. I currently am a Senior Support Group Advisor for CLL Society, helping mentor new support group facilitators and participate in establishing support groups, just like ours, around the country. I am also a Veterans Advisor for CLL Society and participate in SWOG, which is supported by National Cancer Institute (NCI) and its National Clinical Trials Network (NCTN) . I am the Community Advocate representing Military Veterans. I have helped over 80 Veterans receive the benefits they’ve earned in service to our Nation.
International Patient Advocates
I live in Dublin with my wife, Jan, and four children. My journey with CLL began in 2011 when Jan was diagnosed at the age of 39. We realized at that time that we needed to inform ourselves in order to get the best treatment plan available. I strongly believe in patient advocacy and the sharing of information with a view to better treatments and prognosis for CLL patients.
Diagnosed in Melbourne over Christmas 2011 at the age of 38 after being told 6 months earlier that the pea sized lump in my neck was “nothing to worry about”. After a lymph node biopsy I was told I had an incurable cancer with poor prognostic markers (unmutated and del 6q) and that the average patient lived for 5 years, but that the average patient was a 75 year old man! I had my 2 year old daughter on my lap at the time and was determined to do everything I could do see both her and her two older brothers reach adulthood. Twelve months after diagnosis, I had 3 cycles of FCR because of widespread lymphadenopathy with my remission ending in 2014. Now hoping a novel therapy will change the course of my disease and that I may be able to help Australians get greater access to these.
It was the 25th November 2009 during investigation into health issues that I heard the name chronic lymphocytic leukaemia for the first time. Like many shock combined with disbelief about the conflicting information I received left too many questions unanswered. I think it took me nearly 2 years to become comfortable in my own skin again and during that time became active in on-line CLL communities and UK support groups. It was meeting others, learning how they coped and their knowledge of relevant and current information that helped me most. Today I remain on watch & wait and have become an active volunteer patient advocate and work with my CLL friends to continue to build on the work of our community to improve access to relevant information, treatment and care to improve quality of life and outcomes for people affected by CLL.