Nicholas J Graham

Places that Offer Support that I Recommend:

This is the service that provided me with the matched, unrelated bone marrow donor that saved my life (he has yet to contact me, however).

Sign up today to get listed in the registry! www.marrow.org

This wonderful resource is for those patients similar to me diagnosed with mycosis fungoides, or cutaneous T-cell lymphoma.  Judy Jones founded and runs this excellent voice for our special, yet important needs.

www.clfoundation.org

When Judy Jones was diagnosed with cutaneous T-cell lymphoma (CTCL) in 1990, she went from feeling that her world was falling apart to learning to live with the disease. Her search for information to help her with this journey turned quickly to frustration — she had never heard of CTCL, knew no one else with CTCL, and could find no information. Judy wondered how other people were coping with a disease about which they knew nothing. In 1996, she created and went on-line with the CTCL information/support listserv. The listserv grew fast as the word got out, as the Internet increased in size and people became computer literate. Meanwhile, Judith Shea’s husband, Lee Allen Cohen, was diagnosed with Sézary syndrome in 1994 and passed away in 1996. Once again frustration abounded. Frustrated by the lack of information and support during her husband’s illness, Judith created the Lee Allen Cohen Fund in his memory. Her goal was to find a way to use this legacy to provide information and support to others with CTCL diseases. Mr. Cohen’s physician was Dr. Stuart Lessin, a dermatologist treating CTCL patients in Philadelphia, and Judith met with him several times to discuss ways to reach her goal. In 1999 Dr. Lessin was also frustrated. He felt that a patient advocacy group could call attention to the needs for education and research in this field. After receiving information about the on-line CTCL information/support listserv from one of his patients, he called Judy Jones and suggested that she consider starting a foundation. Remembering Judith’s goals, he also called her to discuss the idea of a foundation for MF patients. Dr. Lessin then suggested that the two “Judys” talk and consider attending the upcoming American Academy of Dermatology (AAD) meeting to assess the support of other physicians. During the AAD meeting, they met with the International Society of Cutaneous Lymphoma (ISCL) and other patient advocacy groups and determined that yes — this foundation was needed. Using the funds from the Lee Allen Cohen memorial as seed money, a foundation was created. Frustration found its purpose: The Mycosis Fungoides Foundation. In 2005, in order to step up its efforts to provide accurate information, the Mycosis Fungoides Foundation became the Cutaneous Lymphoma Foundation. Our goal is to provide information. Because this is a rare disease surrounded by many unanswered questions, we anticipate differing opinions. We hope to present objective information so that patients and physicians will be able to discuss individual cases and make informed decisions about treatment options. There is not “one best way” to treat this disease, and it is important for patients to rely on their personal physician’s expertise. It is also important to understand what other physicians are prescribing so patients will understand the range of available options. Used by permission from: Cutaneous Lymphoma Foundation • PO Box 374, Birmingham, MI 48012 • (248) 644-9014

Great resource for information on these blood cancers and LOTS of free materials to help any patient navigate their way through the complexities of having cancer.

www.leukemia-lymphoma.org

Offers some limited financial support but also has lots of free publications to inform you on this disease.

http://www.lymphoma.org

Incredible support groups that cover many types of cancer all housed under one site.  When I was first diagnosed, this is the first place I went to for support and to this day still read the discussion boards and ask questions of the members.

There is one that I go to regularly that is specific for Cutaneous T-Cell Lymphoma (http://www.acor.org/search.html?searchcrit=ctcl&where=mlist) and one that I go to specific for patients with Graft versus Host Disease (http://www.acor.org/search.html?searchcrit=gvhd&where=mlist).

I highly recommend that if you or your loved one has cancer to see if there is a listserve / discussion board here on the acor.org site to pursue.  There are also archives where I search for specific drugs, ailments, etc… over the past 10-15 years for my own research and knowledge.  Great place with open, caring, patients just like you.

CAUTION: While I find open forums like these very useful, they can also REALLY bring you down as some people are extremely negative about their diagnosis and new lifestyle of dealing with their disease.  You have to be careful as well because a lot of people have the tendency to self-diagnose and you MUST be diligent about weeding out these 2 sets of comments/people for fear of making yourself depressed and/or trying harmful alternative treatments.  My best advice is use your common sense and instinct on what seems to be “right” and meaningful to you.