It is very lonely to have a disease that none of your friends have or understand. Sometimes you may feel like you're the "only one out there." Support can be very important. General cancer support groups may help, but they don't have information on the type of treatments you are receiving. Some options are the on-line support listserv, face-to-face meetings, and CTCL-specific groups. This month we will highlight one in Tyler, Texas. If you run a group, or are a member of a group, please let us know so we can publicize it for you.
The CTCL-MF on-line information/support listserv consists of over 750 members who are willing to share their experiences. To join, go to: http://acor.org or contact us for further information.
These are occasional get-togethers where a patient plans a meeting (either at a home or restaurant). They usually consist of 6-15 patients and caretakers who meet to exchange their stories. If you are interested in organizing a get-together, let us know and we'll let you know how to do it.
Face-to-face meeting in Los Angeles
Standing left to right: Steve Froberg, Judy Jones, Paul Zutz
Seated left to right: Kathy MacDonald, Georgia Froberg, Judith Shea, Maruice and Charlotte Hamm
East Texas Support Group
Jerry Camp is a good example of someone that was interested in support. He went out and did something about it. He talked to Dr. Amit G. Pandya at Southwestern Medical Center at Dallas and learned that there were about 12 people within 65 miles that had CTCL. There were seven responses to a flyer, and a group was born.
Vicki Camp added to the meeting with her background as an oncology nurse at Mother France Hospital. We are sorry to report she died suddenly of a brain aneurysm on the 25th of July. Our thoughts are with Jerry and his family.
For information on the group and when they will have their next meeting, contact: Jerry Camp, 11000 Shadowwood Circle, Whitehouse, TX 75791. Phone: 903-839-6160, e-mail: firstname.lastname@example.org