By Barbara Massey – Patient
In March of 2006 my life was good. It seemed like all my ducks were in a nice little row. Then one day I received a phone message from my doctor, saying that I had a white blood cell count of 47,000, and that I should see a hematologist ASAP. Who, me? I feel just fine, thank you! Must be a lab error!
Of course the lab was correct. I had CLL. I gradually wrapped my brain around this news, took a deep breath, and started looking for ways to deal with this new life challenge.
Online I discovered some CLL forums and message boards. There were people online who offered hope, encouragement, and lots of very useful information. I noticed one active online participant named Brian Koffman who shared many details of his own CLL journey. However, besides having CLL, Brian was fighting a difficult and scary battle with ITP (autoimmune low platelets). I thought “Whew! Glad I don’t have both CLL and ITP like Brian!”
I spoke too soon! The next thing I knew my platelets crashed and I was also diagnosed with ITP! As I began exchanging some emails with Brian about ITP, I learned that Brian lived not far from me. In April of 2008 Brian mentioned that he and 3 other CLL patients had just started a local CLL support group. He asked if I’d like to come to their next meeting! YES, I definitely would! It would be great to meet other CLL’ers in person!
There were 5 other CLL’ers at the first meeting I attended….Joe, Wanda, Robert, Brian, and Janet. We met in Joe’s living room, and we each shared our CLL story with the group. We discussed each other’s CLL concerns, questions, and experiences. We did some complaining and some laughing. It was a very comfortable and helpful place to be.
That was 8 ½ years ago. Because I learn so much at these meetings and because this group and the people in it matter a lot to me, I have rarely missed a meeting. It is now a much larger group, and instead of meeting in each other’s homes we meet in a conference room at UCI Medical Center. But the basic purpose and format of the group is the same. The friendly and encouraging environment is the same.
Joining a local CLL-specific support group is one of the best things that someone with CLL can do for himself or herself. The value of being surrounded by people who “get” what it feels like to have to CLL cannot be underestimated. This is a place to learn about CLL, complain about CLL, and to seek others’ opinions about CLL doctors, CLL treatments, treatment side effects, etc. We don’t give medical advice, and we don’t have all the answers, but we can suggest resources that might help. And we can listen.
I would enthusiastically encourage anyone who would like to start a local CLL support group to do so. At first you may find that your group is small, but it can grow. You may want to reach out to other CLL’ers online who live in your area, or you could leave information about the meeting at your oncologist’s office. Over time your number of members will increase.
Each CLL support group has its own personality and will be slightly different. But I would recommend a few things that we have found to be helpful to keep things running smoothly, especially as your group gets a little larger.
- Send an email reminder a few days prior to each month’s meeting, with the time and location of the meeting. Most of us with CLL have pretty busy lives, and people seem to appreciate receiving a reminder of the meeting date, time, and location.
- As our group has grown we like to use name badges. This especially helps new members.
- We have a sign in sheet. We provide spaces for each person’s name, email address and phone number.
- We usually have bottled water and light snacks on hand, since our meeting is at 7 pm, and some of our members have driven straight from work to get to the meeting.
- We encourage caregivers to attend if they like. My husband comes often, and will tell you that he enjoys and benefits greatly from being part of the group.
CLL Society has resources to help those who are interested in starting a local CLL-specific support group. Go to the Support Group section of the CLL Society website to reach out to the Director of Support Groups and to see a calendar of currently available CLL Support Groups.
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. After a nice long remission my CLL is becoming active again, and I expect to need treatment again soon.
Originally published in The CLL Tribune Q3 2016.
