Re: Welcome to MPDSUPPORT

[Gawky Zhu]

Hello,
Thanks for the detailed welcome message from group owner!
I live at a small city in Canada.
My wife diagnosed PV one year ago when she was 41 years old.
After that, I tried to learn the related knowledge as much as I can.
but the uncertainty makes me feel bad.
my wife looks OK. but a few times she talked with me about she would die before me.
I can feel she suffer the disease a lot.
Her doctor seems not very caring (maybe I am wrong). facing the different testing result, he always say it's OK, it's normal, nothing change, let's keep the same method.
Maybe my wife's condition do be not serious. but sometimes it makes us feel helpless.
so I tried to join groups to learn more. and hope our real personal experience will encourage her.
Thanks for involving me!

Jason


________________________________
From: LIST...@LISTSERV.ICORS.ORG <LIST...@LISTSERV.ICORS.ORG>
Sent: February 4, 2022 16:52
To: Jason Zhu <gawk...@MSN.COM>
Subject: Welcome to MPDSUPPORT


Hello and Welcome to MPDSUPPORT.

----------------------- LISTSERV AND WEB SUMMARY ---------------------

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.ICORS.ORG/archives/MPDSUPPORT.html

Our MPDSUPPORT web home page site:

http://www.mpdsupport.org

----------------------------------------------------------------------

Since 1994, our myeloproliferative disease support list and MPDSUPPORT
web site, <http://www.mpdsupport.org>, offers interesting information on
chronic myelogenous leukemia, polycythemia vera, essential
thrombocythemia, agnogenic myeloid metaplasia, chronic myelogenous
leukemia, 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.

We currently have approximately 3000 subscribers in 41 or more countries.

My name is Robert Tollen. I have polycythemia diagnosed in 1990, and I am
the listowner. Being the volunteer listowner means that if you ever have
a technical question, hopefully I can answer it. You can always reach me
at mensa...@aol.com or robert...@gmail.com. You may want to save
this file for later reference.

If you want to see how your subscription options are now set, send an
email to LIST...@LISTSERV.ICORS.ORG and the subject or title may be
anything, and the body should say,

QUERY MPDSUPPORT

Setting options. You can chose to receive individual posts almost as soon
as they are received and then broadcast by the automated software to our
subscribers or instead, you can chose to receive a daily digest format
which will send you just one email a day but which will usually have
multiple posts from the previous 24 hours and sent all in one email (the
default). With digests, you get just one large post each day and you can
chose to read and respond off line. To set your subscription for
individual posts mode do this:

Email to: LIST...@LISTSERV.ICORS.ORG Subject line: Anything you want but
not blank. Body: SET MPDSUPPORT MAIL

If you do NOTHING AT ALL, you will still be subscribed and you will still
receive all posts in daily DIGESTS format.

If you ever want to unsubscribe:

Email to: LIST...@LISTSERV.ICORS.ORG Subject line: Anything you want
Body: UNSUBSCRIBE MPDSUPPORT

If you go on vacation you can suspend your mail by doing this:

Email to: LIST...@LISTSERV.ICORS.ORG Subject line: Anything you want
Body: SET MPDSUPPORT NOMAIL

When you return, you can restart your mail by doing this:

Email to: LIST...@LISTSERV.ICORS.ORG Subject line: Anything you want
Body: SET MPDSUPPORT MAIL

***

Our group started out in 1994 when just two of us, myself included and
using America on Line, met after reading each other's inquiry posts in
the health section on AOL while looking for someone else with
polycythemia. Over the next months, we added more and more people and
grew into a group of about 40 from around the world but mostly in the
United States, that would write to all by writing to one and carbon
copying the others. Because of size our group eventually became
unmanageable, we requested and received help from AOL to start a
myeloproliferative disease mailing list. Our mailing list MPDSUPPORT was
started around February, 1996. As a mailing list, many more people now
know about us. Although our automated software recently moved to L-Soft
from AOL, we have subscribers from all around the world and from all the
major Internet service providers.

You are welcome to "lurk" forever, and we have many subscribers that
never write, and we also have subscribers that write to our mailing list
a lot. Do whatever you are comfortable with doing. If you have a
question(s) you can always post it to our group by emailing to
MPDSU...@LISTSERV.ICORS.ORG and you will often get many responses.
Usually one or two of us will at least be able to steer you in the right
direction if not actually answer your question(s).

We have composed two introductory letters, one for polycythemia, and one
for essential thrombocythemia. We also have an informative letter on
Hydrea (hydroxyurea). They are available at our web site,
http://mpdsupport.org along with good information about the various
myeloproliferative diseases.

Even if you feel you are very familiar with any particular
myeloproliferative disease, please still ask your questions to our list,
since there is good resource information from our thousands of
subscribers. Most of our subscribers are fellow patients, plus we also
have quite a few health professional subscribers.

If you are newly diagnosed, I strongly suggest that you post a short note
introducing yourself to our subscribers. We have all at one time been
newly diagnosed. We can help you and offer you support. One or more of
our subscribers may have some important information to help you, but
unless you announce yourself to us, we will have no way of knowing
anything about you. To post to our list, simply send your post to
MPDSU...@LISTSERV.ICORS.ORG. You might want to copy and paste this
address into your email address book, and you can title it, "-
Myeloproliferative Disease Support List" without the quote marks. I use a
dash and a space in front so it is one of the first addresses in my
address book.

If you ever want to check your settings, you can use our EZweb site,
http://LISTSERV.ICORS.ORG/archives/MPDSUPPORT.html You can use this 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.

Please bear in mind that I am not a physician, nor am I even a health
professional. Some information or advice may be well meaning, but may not
be medically correct in general or not medically correct specifically for
you. Always work with your hematologist or the oncology nurse and follow
his or her guidelines and directions.

Regards,

Robert Tollen List owner, MPDSUPPORT mensa...@aol.com or
robert...@gmail.com (primary) MPD-SUPPORT WEB PAGE:
http://www.mpdsupport.org




\\\\ To post or reply, email to: MPDSU...@LISTSERV.ICORS.ORG ////

[Raghu Balachandran]

Hi,
PV is a very manageable disease. I am living with it for over 20 years
now... I am 46 Male. My doctor Dr. Stone at DFCI tells me that people live
late into their 70s quite easily. I am sure there are several in this group
who manage just on coumadin and peg-interferon (which may sometimes make
you feel lousy). I have been on warfarin and propranolol for several years
now. I strictly follow vegetarian diet and play as many sports as possible
with my daughters... keep busy with office work. Was traveling 4 days a
week as a consultant... now work from home.

So.. my two cents.. Life is beautiful. be positive... adopt a pet.. take
long walks. the more you walk less the chance of getting a blood clot.

Regards
Friend
The more you get into a negative spiral, the more you get sucked in,