Lymphoma Information Network - Surviving Mailing Lists

Lymphoma Information Network - Hodgkin's Disease and the Non-Hodgkin's Lymphomas

Site Navigation		Surviving Lymphoma: Mailing Lists

Mailing lists are groups of people with similar interests. They e-mail messages to a central address and their message is retransmitted to the rest of the list members. This allows for conversations between list members. Often one can ask a question and have someone on the list send a message with the information needed.

Mailing lists are great for getting lots of information and asking questions of others - and for seeing there are others out there in similar circumstances!

Watch out - a mailing list can generate many messages per day. To unsubscribe, use the directions sent to you in your first message (save that first message to make sure you know how to do this).

Association of Cancer Online Resources (ACOR)

Currently, I am recommending many mailing lists on ACOR.Org - I have known this organization a long time and their quality and commitment to helping people as opposed to commercial sites that might have other motives.

BMT-TALK is devoted to Bone Marrow and Stem Cell Transplants

CANCER-FATIGUE is devoted to those with cancer fatigue (a very common problem)

CANCER-FERTILITY is devoted to fertility issues in cancer patients & survivors

CANCER-FINANCE is devoted to financial issues relating to cancer

CANCER-PAIN is devoted to, obviously, cancer pain issues

CLINICAL-TRIALS talks about cancer clinical trials

CLL is devoted to those with Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma

CTCL-MF is devoted to Cutaneous T-Cell Lymphoma and Mycosis Fungoids information and support

HODGKINS is devoted to Hodgkin's Disease/Lymphoma

Long Term Survivors is a mailing list devoted to the specific concerns of long-term cancer survivors.

NHL is devoted to Non-Hodgkin's Lymphoma support

PED-LYMPHOMA is for parents of children with lymphoma

Yahoo

Yahoo appears to have surfaced as the service hosting the most chats on the Internet after buying out companies like eGroups. There are several Lymphoma maining lists / communities on the Yahoo system.

Burkitts_Lymphoma is a group dedicated to Burkitt's
Gastric_Lymphoma is for those with lymphomas of the gastric tract
Hodgkins-lymphoma is a good list dealing with Hodgkin's Disease.
hodgkins is a discussion group with the primary purpose of providing a medium for communication between people who have or have had Hodgkin's Lymphoma, caregivers, or people who have a significant interest in the disease.
HodgkinsDiseasewithHiv is for those with Hodgkin's and HIV infection.
lymphoma is a general lymphoma support group
lymphoma-survivors was started by a survivor of Non-Hodgkin's T-cell Lymphoma. This group is dedicated to talking about lymphoma in a friendly, helpful environment. This is not an alternative health group nor is it an advertisement. I just want to talk to others who have dealt with or are dealing with lymphoma (and t-cell NHL).
LyPSupport is a discussion/support group for people who have a very rare lymphoproliferative disorder called lymphomatoid papulosis (LyP). Note: Some doctors classify LyP as a low-grade cutaneous t cell lymphoma (CTCL). Highly recommended!
MantleCell is for those diagnosed with Mantle Cell NHL (small)
MF-CTCL is a listserv for people dealing with the problems of the rare disease known as mycosis fungoides and/or cutaneous t-cell lymphoma. All medically proven treatments will be discussed as will support issues for people dealing with MF-CTCL. Anyone impacted by MF-CTCL is encouraged to join. This will be a moderated low traffic listserv where list messages will be released once every few days by the listowner. The goal of this group is to be able to discuss MF-CTCL in a friendly and nurturing environment
nhl - the Non Hodgkin's Lymphoma Cyberfamily, founded in 1996 is the oldest and one of the highest regarded Non-Hodgkin's lists on the Internet. With a large membership and active discussion, this group receives one of my highest recommendations.
nhl-dlc is a discussion list for people with diffuse large cell lymphoma, an intermediate grade disease.
nhl-follic is a discussion and support list for people with follicular lymphoma, including small cleaved cell, mixed, and large cell.
nhl-info goal is to keep participants up-to-date with the latest information about NHL, share experiences, and to provide support and encouragement.
nhllow was setup to provide information on conventional treatments that will cure low grade (indolent) non-Hodgkin's lymphoma or to find treatments to put cancer into the chronic disease category. An established, large group of dedicated people. Recommended.
nhl-malt is a support group for nonHodgkin's lymphoma of the MALT monocytoid cell type variety, and Marginal Zone Lymphomas. All postings useful to MALT/monocytoid patients are appropriate, whether they address mainstream, complementary or alternative modalities.
NHL_UK is for NHL patients in the UK - a large, thriving group.
non-hodgkin_lymphoma is a general NHL group
NonHodgkins is another NHL List
skinlymphoma-notMFnotLyP is a group for people Large Cell Lymphoma of the skin. This disease is also called Cutaneous Anaplastic Large Cell Lymphoma, Ki-1 lymphoma of the skin, and Primary Cutaneous CD30+ lymphoma. I believe it has been referred to as Hodgkin's Skin Lymphoma, although it is classified as a non-Hodgkins Lymphoma. Of the skin lymphomas, it is second most common after Mycosis Fungoides. The website: http://www.emedicine.com/med/topic3486.htm of Dec 2002 gives the present knowledge of the disease.
SLL-CLL-edu is a group soliciting postings of general interest to patients with SLL/CLL (small lymphocitic lymphoma/chronic lymphatic leukemia). We solicit information of a general educational and informative nature.

If you only have one e-mail account and want another for all the messages a mail list generates you may want to sign up for a web based account. Several companies offer these for free (they may post some advertising to support the service). Some companies offering such services are Yahoo and Hotmail. Yahoo Groups may require you to join Yahoo but it is free and easy.

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This page is a work in progress - if you have more complete information, references, or other information please contact the author. The author is not in the medical field and does not warrant the correctness of the material on this page or the sites linked - please take online information and consult with your own medical team to make informed decisions.

Surviving Lymphoma: Mailing Lists