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The MPD-SUPPORT-L Webpage
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Since 1994, our MPD-SUPPORT-L web site and free support email list offers
interesting information on chronic myelogenous
leukemia, polycythemia vera, essential thrombocythemia, agnogenic myeloid
metaplasia, myelodysplasia, and myelofibrosis.
Anyone - patient, family
member, or health professional, is welcome to join
our growing list of
subscribers. Our archives are available for you
to
research information.
You can subscribe to our daily digest list by either one of our two easy methods,
Our EZ web interface, or by email.
Use our EZ web interface to to subscribe, to post a message once subscribed,
to reach a listowner, to unsubscribe, to easily vacation stop and restart your
mail, to review and change your delivery options, and for an EZ review of our
list archives:
To Subscribe to
MPD-SUPPORT-L by email
To Access Our Archives
From the Archives - scroll down to
see our abstracts and letters of interest
Links & Addresses
To Subscribe to MPD-SUPPORT-L
by email
Email to: LISTSERV@LISTSERV.AOL.COM
Subject line: blank or just a dash if your server is
AOL
Body: SUBSCRIBE MPD-SUPPORT-L John Smith (Substitute your first and last name for John
Smith's)
Once subscribed, if you wish, send us a little introduction explaining who you are, your myeloproliferative disease and your treatment history or your professional interest, along with any questions or comments you wish to post to our group.
GOING ON VACATION: To temporarily stop service by email, do the following:
Email to: LISTSERV@LISTSERV.AOL.COM
Subject line: blank or just a dash if your server is
AOL
Body: SET MPD-SUPPORT-L
NOMAIL
When you return and want service again, do the following:
Email to: LISTSERV@LISTSERV.AOL.COM
Subject line: blank or just a dash if your server is
AOL
Body: SET MPD-SUPPORT-L DIGESTS
Or use the word MAIL instead of DIGESTS, if you want the individual mail mode. Individual mail mode has each post come to you as it is sent in by the writer. Digests are posted as one combined message and is sent out every night at 12:00 AM Eastern. Digests is the default subscription setting and is the best setting for most people.
To see the mail you have missed and to get an index of our archived files, you can do the following:
Email to: LISTSERV@LISTSERV.AOL.COM
Subject line: blank or just a dash if your server is
AOL
Body: INDEX MPD-SUPPORT-L
Then request the monthly archive file you have missed. It will come in digest mode so that you can quickly review the postings you have missed.
ARCHIVES:
The easiest way is to use our web site, http://listserv.aol.com/archives/mpd-support-l.html
----------------------- LISTSERV AND WEB SUMMARY
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Use our EZ web interface to post a message, to
reach a listowner, to
subscribe, to unsubscribe, to vacation stop and restart
your mail, to
review and change your delivery options, and for EZ review of
our list
archives:
http://listserv.aol.com/archives/mpd-support-l.html
Our archives are also available by sending an email to AOL, where you can search for the mailing list title, MPD-SUPPORT-L, and review previous posts from November 1996 to today. For earlier post archives from February 1996 (when we started our mailing list) through today, do this:
Email to: LISTSERV@LISTSERV.AOL.COM
Subject line: blank or just a dash if your server is
AOL
Body: SEARCH (insert your topic here) IN MPD-SUPPORT-L
For example, if you want our postings on anagrelide, type in SEARCH anagrelide IN MPD-SUPPORT-L. Listserv will return to you a digest listing of our postings on anagrelide. If you would like the postings about anagrelide by a certain subscriber (John Smith, for example), then type SEARCH anagrelide AND Smith IN MPD-SUPPORT-L. Abstracts of each digest posting will be included; instructions are also included to GETPOST MPD-SUPPORT-L for those postings of which you decide you want a complete copy. More information on LISTSERV commands can be found in the LISTSERV reference card.
Email to: LISTSERV@LISTSERV.AOL.COM
Subject line: blank or just a dash on AOL
Body: LISTSERV
REFCARD
List managers: Robert Tollen, mensabrain@aol.com or Norm & Ruth Freeburg,
Reviews and letters of interest from our archives.
Please bear in mind that we are not physicians, nor even health care professionals. Always work with your hematologist and follow his or her guidelines and directions.
MPD (general)
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AMM/MF
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curettage and stem cell rescue for AMM/MF & related disorders
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combination therapy for MF/AMM - erythropoietin & interferon
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Essential Thrombocythemia
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Polycythemia Vera
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http://wwwicic.nci.nih.gov/ Homepage of the National Cancer Institute with access to PDQ and other information on MPD for patients and physicians. The patients' search engine provides fact sheets on a number of treatments & concerns - pruritus, carcinogens, biological modifiers, hair dye, etc. Also check the MPD clincial trials under the health professionals' information.
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http://wwwicic.nci.nih.gov/clinpdq/canlit/leukemia.html Cancerlit abstracts of the current journal articles on MPD.
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http://www4.ncbi.nlm.nih.gov/PubMed/ A good Medline source for locating titles of medical journal articles, many with abstracts online.
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http://oncolink.upenn.edu/ A link to useful cancer information including current treatment trials, financial/insurance assistance, and bone marrow/stem cell transplant information.
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Addresses : Click here for helpful addresses and phone numbers of government agencies, physicians, and organizations (including a European PV group). Also find centers accepting donations for MPD research and a list of top USA hem/oncs as chosen by doctors themselves. |
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Please bear in mind that we are not physicians, nor even health professionals. Always work with your hematologist and follow her or his guidelines and direction.
Robert Tollen, list manager
Webmaster Josh Freeburg