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.
In December of 2008 I was given the news that I had CLL and like most people I went into shock thinking about what was to become of me. I started to research CLL on the web a found a wealth of information, but being both a visual and impatient patient I needed to talk so someone. While there were lots of “groups” out there, there were no specialized CLL groups, at least none that I could find. I was becoming active on a CLL forum site and met another patient who lived relatively close to me. She knew of other patients who were local. We decided to form the first (as far as we knew) CLL patient-led support group. This group fostered the idea of putting a team together, discussing the state of my disease with other people in a similar situation, and encouraged questioning of proposed treatment plans. I recently entered in to a drug trial with one of the new and effective drugs. Today, I am looking forward to a long remission, with the possibility that a cure will be available for me.
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.
It was discovered I had CLL in 2007 during a routine blood test. I was referred to a local hematologist. After researching online and discovering that there was a blood test call FISH that provided information that would impact future treatment options and provide prognostic guidelines, I called the hematologist office to get the test. They had never heard of it. I again searched the internet and read the CLL online forums and discovered a CLL specialist in my area. That has made all the difference. Getting the FISH test with the CLL specialist, it was revealed that I was 17p deleted and unmutated—a finding that suggested future treatment difficulty. I began treatment in February 2012 based on a diagnosis of autoimmune hemolytic anemia. I opted to enter a clinical trial at the National Institutes of Health in Bethesda, MD for a new treatment called PCI-32765, now call Ibrutinib or Imbruvica. I continue to do well on this treatment and am in a partial remission.
I was officially diagnosed in December 2003. Prior to the diagnosis, I had three consecutive blood tests with an increasingly elevated WBC over a 5 month period. When I saw the hematologist in November he did a FISH test to confirm the diagnosis. On my return visit in December I received the news. 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. I was determined not to do chemo again and found a clinical trial with what is now Zydelig and Ofatumumab. Again, I didn’t do well on the study drug and finished the study with just Ofatumumab in March of 2014. Imbruvica had just been approved and I’ve been on that since. I’ve now been on it for 4 years and thankfully doing well.
I am currently a patient educator for the CLL Society and am enjoying meeting people from all over the United States, helping to facilitate the start new support groups.
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.
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 Patient Educator for the CLL Society and participate in establishing Support Groups just like ours around the country.
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.