By Patients Brian Koffman, MD, Wanda Zimmer, Janet Morrison, Terry Evans, and Joe Greenblatt
Brian Koffman: There is so much that we can learn from each other when we share a rare and incurable disease, so I am blessed to have been part of a chronic lymphocytic leukemia (CLL) specific support group for the last ten years. I remember well when we started with only 3 folks and met in each other’s living rooms. We shared our stories, and worries and our knowledge.
We grew slowly.
We became fast friends, comrades in arms and we covered each other’s backs. We had good news and too much bad news in those early days. We celebrated each other’s successes and grieved together at our losses.
Our numbers grew more.
What I thought would be a cool exchange of information, became a lifeline of support and nurturing.
We grew even more.
We moved into restaurants and board rooms and now a university meeting room for our monthly get-togethers. We had to get more formal in how we ran the meetings. Today we have rules and legal disclaimers and our own monthly newsletters. We made many adjustments to improve the experience for both CLL newbies and veterans. Together, we’ve witnessed the dramatic improvements in CLL therapies in the last decade, seeing better and better outcomes for our group members.
I don’t think it’s an exaggeration to say that we have saved lives with our counsel.
We have given birth to other similar groups across the country and internationally. We are even planning a virtual online group for those in smaller communities lacking the critical mass for a local CLL support group.
Despite all our growth and changes and new faces, what hasn’t changed but has in fact grown in those 10 years is the life-saving sharing of experiences, the gentle advice, the group wisdom, the love and laughter found in the darkest moments, the unending support and the kind of deep friendships that can only develop when you have fought side by side for years together.
So here is to our first amazing decade!
And here is to many, many more.
We are all in this together.
Wanda Zimmer: It’s hard to believe that 10 years have gone by since the start of this CLL Support group. I was one of the original members, all of us scared and searching for information for this rare, insidious disease. As our group grew through word of mouth I was always amazed at the knowledge base shared with our group. We were in different stages of our disease, yet those of us attending always came away with helpful information and hope. If it had not been for this support group, I’m doubtful I would have survived CLL. Brian Koffman helped me get to the right physician and hospital to facilitate my stem cell transplant. Today, I’m 5 years disease free and back to a full life. Although I haven’t attended the group for a while, my heart remains with those who are still on their journey to discovery and knowledge.
Janet Morrison: It’s a tradition as old as mankind … to gather together to learn from the wisdom of those who have come before and to walk hand-in-hand with those on the same journey … to gain understanding, to make wise steps, and to avoid the pitfalls. That’s what the CLL Network Support Group has been for me over these last ten years.
Upon my CLL diagnosis, statistics revealed a 2- to 7-year life expectancy. Here I am 11 years later. And, I am sure it’s because of the shared wisdom of the support group.
And, equally important to me, I’ve made life-long friendships in the group. Together, we have shared good times, and bad times. We have laughed and also shared a few tears. But whatever came, we have been there for each other, and that has made all the difference!
Terry Evans: I had been reading the online forums since I was diagnosed in 2000 and in 2008 I saw a post that there was a CLL Support group about 10 miles from where I lived. I had never been to a support group of any kind but decided to give it a try. I was immediately exposed to 5 people that all shared a common bond with me, they all had CLL. Before this, I had not known anyone with CLL even though I had been diagnosed eight years earlier. What I found was that here was a group of people in various stages of the disease all looking for both support and education. I quickly found out that we were ALL different in our journeys. Some of us had been treated, some had not. Some had B symptoms, some did not. Some had developed autoimmune complications that could be more life threatening than the CLL. But most importantly, I found out I was not alone. I found out that doctors are not infallible and I found out that you could actually ‘fire’ a doctor if you didn’t think you were getting your questions answered or getting the best of care. But what was reinforced more than anything, was the fact that you need a CLL Specialist on your team. For me, this information alone, saved my life. I was pointed to a doctor that really understood the subtle nuances of CLL and together we have dealt with challenges that treating CLL brings to the table. I now have a group of lifelong friends. I have developed a passion for helping other CLL patients understand the importance of support groups and how they can change your life for the better, as this has done for me.
Joe Greenblatt: It’s hard to believe it’s been 10 years already. Pam and I are going on 11. That’s hard to believe also.
I remember when that Doc at Kaiser told me I had CLL. I had no idea what he was telling me….just that it was serious and I should get my life together. He was neither comforting nor really concerned with my welfare.
Pam and I were hosting a party at my house the next day. It was a great party and took my mind off of the dire news I had just heard.
Determined to find out about what was happening to me (I was never so scared in my life…I had never contemplated my demise, and I wasn’t going to go down without a fight!). So off I went into the internet looking for information and hoping it would help me get through my anxiety.
I found the CLL Forum. I mostly just starred at the screen for about 2 weeks…..Reading blog after blog trying to understand. I was looking for a group that would deal with CLL only. I called the Leukemia & Lymphoma Society who sent me info, but alas no CLL exclusive group.
During the next month, I finally decided that I had to at least get involved on the CLL Forum. I started chatting with Wanda Zimmer and during that chat, I asked her if she knew any other patients who would be interested in forming a group which was exclusively CLL. Wanda said she had had some interaction with Brian Koffman. I asked her to see if he was also interested in starting something.
I believe it was a cold rainy night when Brian, Wanda, and Robert showed up at my house in Irvine. The meeting of these four strangers went on for several hours and we agreed to meet again in a month. We continued to meet monthly.
My background was really finance, even though I have a Chemistry degree. The language of this disease was foreign and strange. But with continual reading and speaking to all the new members of this group, I picked up the lingo.
This group has introduced me to some wonderful people, and more importantly I have developed an understanding of my disease, and, believe it or not, I learned to relax and appreciate the fact that in knowledge there is strength.
By the way, I no longer think about my disease every waking moment…the group has given me peace!
I can definitely say that this group has become an important part of my life, even though I have not always found the time to participate in the last year. I am hoping that will change soon.
I cannot close this without thanking Pam Ranta for her love and support during my extended battles with health issues during our 10 years together.
Dr. Brian Koffman, a well-known doctor, educator and clinical professor turned patient has dedicated himself to teaching and helping the CLL community since his diagnosis in 2005. He serves as the unpaid medical director of the CLL Society Inc.
I am one of the three original members of the CLL Support group in Orange County Ca. I can’t believe it’s been 10 years since this group started. I was diagnosed with SLL/CLL in 2006 and although I didn’t have a high disease burden, I had numerous life threatening infections. The CLL group gave me the support and the informational resources to lead me to Stanford Hospital where I received a Stem Cell Transplant in 2011. Today, I’m back to leading an amazing life, fully recovered! Without the CLL Support group, I probably wouldn’t be here today to thank everyone in the group. Happy 10th Anniversary to you all. Wanda Zimmer
It was discovered I had CLL in July of 2006 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. Janet Morrison
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. Terry Evans
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. Joe Greenblatt
Originally published in The CLL Tribune Q3 2017.