The Association of Cancer Online Resources, ACOR, hosts a Mantle Cell
Lymphoma
e-mail driven forum or Listserv where various members may post
voluntary information on their diagnosis (DX), treatments (TX), and
physical condition. This patient community organization has a qualified
and competent team that maintains an Excel spreadsheet which summarizes
and organizes this information. If you are an ACOR MCL member, you may
view the anonymous but detailed information on the Spreadsheet (SS).
Members of the medical community are encouraged to join our Listserv
and should note that viewing our information is not in violation of the
HIPAA medical privacy act. This act, as documented in the Federal
Register, allows sharing of the voluntary medical information that is
exchanged among members of a discussion forum. If you are an
oncologist, the data shown here, as well as the SS itself, should be
informative and useful.
Presently, there are 861 MCLers who have contributed
information on
their DX, TX, and their condition with one row of the SS used
for each member. A total of 214 of these rows are in the deceased or
“In Memoriam” section. Of the remaining 647 about
two
thirds have not reported within a few years but the data on their DX,
TX,
and condition is still valid. Some of these
non-responders would undoubtedly in the “In Memoriam” section.
The other
third
continue to post and update their medical condition routinely
wherein our SS editor updates the information in the Excel SS as well
as PDF and DOCX files.
We also invite you to visit our MCL Links
site with links to many interesting and valuable MCL information sites.
If you do not have Microsoft Excel on your computer, unfortunately the
Microsoft Excel Viewer is no longer available. You could download the
PDF or Word
version from the email anouncing the current release or try Microsoft's
current recommendation:
"To
continue viewing Excel files for free, we recommend that you install
the Excel mobile app or store documents on OneDrive or Dropbox, from
which Excel Online can open the files in your browser. For the Excel
mobile app, go to the appropriate store for your device."
We would encourage all patients, family, caregivers, and medical
professionals to join the ACOR Mantle Cell Group in order to
obtain access to the anonymous spread sheet with the data for
all patients. Using the email
list you will also be able to correspond with almost 400 similar MCL
patients. You can join by clicking
on
this link and entering your name and email address.
The hidden link to download the January 1, 2025
issue of the
Excel spreadsheet is given in the recent January 12, 2025 ACOR email on
this
subject. Next issue is scheduled for May 1,
2025.
And remember to visit: https://mclpage.org/mcllinks.html
to view the excellent collection of Internet links related to Mantle
Cell Lymphoma and cancer in general that has been compiled by Larry F2
and
Beth P with excellent input from Wanda R and is constantly updated.