Supportive Care
IMF HOTLINE COORDINATORS ANSWER YOUR QUESTIONS
The IMF Hotline 800-452-CURE (2873) consistently provides cal ers with the best information about myeloma
in a caring and compassionate manner. The Hotline is staffed by Paul Hewit , Missy Klepetar, Nancy Baxter,
and Debbie Birns. The phone lines are open Monday through Friday, 9am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.
I have recently become somewhat
6. The IMF website also features
computer literate and am wonder-
an index of links to other online
ing what information you provide
resources that range from financial
via computer other than your
help to advice for caregivers. This
website?
is available as the last item on the
That is a great question because the
drop-down menu under "Living
International Myeloma Foundation
with Myeloma."
(IMF) is also becoming more computer
Myeloma Listserv
savvy and is able to provide more help
In addition to face-to-face local
via computer to patients regarding all
support groups, the IMF has cre-
aspects of their journey with myeloma.
ated a cyber community of patients
Website
and caregivers in conjunction with
Paul Hewitt, Missy Klepetar, Nancy Baxter, and Debbie Birns
You mentioned that you are familiar with our website, but we'd
the Association of Online Cancer
like to remind everyone what is readily accessible via our website
Resources (ACOR). The listserv helps members communicate quickly and
www.myeloma.org:
easily via e-mail. This incredibly supportive and informative "family" of
1700 participants can be found by clicking on the "Find Support" and
1. A full library of PDF versions of all
then the "Online group" tab. It is easy to sign up for this list by following
IMF publications, including the Patient
the directions on the ACOR link
Handbook, the Concise Review, and all
provided or you can go directly
booklets from the Understanding series.
to http://listserv.myeloma.org.
2. Webcasts from medical meetings held
While the listserv is a wonderful source of all sorts of information, we
by the American Society of Hematology
remind everyone, as always, to verify anything you have read with your
(ASH) and the American Society of
physician and not to follow any suggestions or advice offered that you
Clinical Oncology (ASCO), as well as the
might receive without talking to your doctor.
bi-annual International Myeloma Workshop, and the
Myeloma ManagerTM
IMF Patient & Family Seminars. Just click on the "Webcasts" tab at the top
of the IMF home page and you will get a dropdown menu of all of our
Personal Care AssistantTM
webcasts or go directly to http://webcasts.myeloma.org.
The Myeloma ManagerTM Personal
Care AssistantTM (MMPCA) is a soft-
3. The publications of the International Myeloma Working Group (IMWG)
ware program designed specifically for patients and
are also on our website. There are over 30 IMWG publications, with
caregivers battling multiple myeloma. It was developed
subjects ranging from diagnostic criteria to response criteria. These can
by the IMF to help patients and caregivers deal with the glut of information
be found under the "Research" tab and then under "Myeloma Working
and constantly increasing complexity of myeloma treatment programs. The
Group." In addition to the full papers, we have begun to create summary
program runs on your computer and stores all personal data on your com-
guidelines of each of these papers, which are also listed on that page.
puter. None of your data is transmitted to anyone. Access to the Myeloma
4. The links to clinical trials and clinical trial search tools are constantly
Manager is password-protected and the data is encrypted (scrambled) so
being updated on the IMF website, and these are a good way to find rel-
that it cannot be accessed from outside of the Myeloma Manager.
evant clinical trials. Just click on "Clinical Trials" on our website.
At its core, the Myeloma Manager provides a tool to capture laboratory
5. Our support group directory can help you find a group in your area.
results and display and print tables and charts to show how those results
Just click on "Find Support" and you will go to http://support.myeloma.
change over time. Other features include automatic backup of your data
org page. Myeloma support groups in the US are listed by state, and
each time you shut down the program, calendars, and graph features
international groups are listed by region and country. Some of the
such as plotting multiple tests on one graph and time-scaled graphs. The
groups have their own websites that feature specific details on their
software also includes real-time news feeds from the IMF website and a
activities and upcoming meetings, and those links can be found in the
reference shelf, with links to useful publications and web pages.
group descriptions.
CONTINUES ON PAGE 14
800-452-CURE(2873)
13
Supportive Care
SANDRA ROME / MOBILITY & SAFETY -- continued from page 12
· Adjust medications
In any setting, the immediate need for patient safety (e.g. prevention of
· Recommend an exercise program that includes training in gait
falling) should be the priority, and the patient's environment should be
and balance, and stretching
assessed and modified to maximize safe mobility (e.g. rug placement,
handrails, and grab bars).
· Assessment and modification of daily routines
· Safety of home environment
What about ongoing assessment and readjustment?
Cancer rehabilitation is seldom linear; myeloma survivors may have var-
What precautions should be considered?
ied problems and symptoms over time, such as pain, neuropathies, etc.
Patients need to be educated as to when they need to modify or abstain
Ongoing patient assessment of risk of falling, physical activity, medica-
from their exercise regimen. For example, when they have a fever, patients
tions and their side-effects, laboratory and diagnostic tests, nutrition, and
should avoid group participation; if they have low platelets, a greater
adequate management of other health issues is essential.
concern for strenuous activity and maintaining security of balance needs
to be emphasized. Patients with balance problems may need to use a chair
Maintaining a weekly exercise log helps patients track the frequency,
or wall for balance.
intensity, and duration of the exercises they perform. Based on patients'
documented exercise performance, programs could be altered to best
Patients must be cautioned to listen to their own bodies and abstain from
accommodate their physical functioning (e.g. if the patient is feeling very
activities that cause discomfort. Clinicians should recommend safe activity
fatigued the intensity of the exercises can be lowered accordingly).
as part of the plan of care for every patient. On the one hand, a patient
Any closing comments?
who had been active previously may not want to adhere to restrictions
such as calling for help or using a walker. On the other, a sedentary indi-
Whatever is recommended or endorsed as exercise or activity needs to
vidual may not understand the importance of exercise on bone health.
be carefully evaluated by the patient's healthcare providers. Patients and
Safe mobility and physical activity programs need to be tailored to the
their family members should be instructed to tailor the patient's activities
needs of each individual patient.
based on daily health status and communicate with the healthcare team
regarding any questions or concerns they might have. MT
IMF HOTLINE -- continued from page 13
At this time, the Myeloma Manager is available for Windows computers
we have the capacity to hold virtual meetings between two people who
running XP, Vista, or Windows 7. It is not yet available for Macintosh,
are logged on to their computers. This is a tool that has come in handy
although it can be run on a "dual boot" Mac running Windows.
for our webmaster, Abbie Rich, as she assists support groups in building
their own websites.
You can find the Myeloma Manager on the IMF website and down-
load the program by either clicking on "Living with Myeloma"
Miscellaneous resources
and then going to Myeloma Manager or going directly to the link
The are a lot of other computer-based resources and services that you
http://manager.myeloma.org.
might find useful. For example, the CaringBridge website at www.
Personal Memory Stick
CaringBridge.org allows patients or their caregivers to create a free
personalized website to connect family and friends. These personalized
In an ideal world, every person would create, update, and
websites are private and accessible 24 hours a day and can greatly ease the
carry around a small memory drive on which the store their health
burden of keeping family and friends up-to-date with a patient's progress.
history, medications, and current year's laboratory data. Some institutions
For example, if someone is having a stem cell transplant or is hospitalized
like the Kaiser system in California, which has fully implemented elec-
for some other reason, the author can provide health updates and even
tronic medical records, make these small memory sticks and all laboratory
photos to share their story. Visitors to the CaringBridge webpages can
results available to their patients. Storing and carrying your medical data
leave messages of love and support in the guestbook for the patient and
on a memory stick is a safe and reliable way to share medical information
family.
when visiting different doctors who need to know your medical history,
Finally, we want to remind everyone that while computers are great, there
what medications and dosages you're taking, and what your current lab
is sometimes nothing better than a live human being at the end of the
values are. If you already have all this information stored in your computer
phone. So don't forget about the IMF Hotline, even if you just need help
on your Myeloma Manager, it is a small step to transfer all the information
finding something on our website. MT
on that program to a memory stick and carry it with you in your pocket,
ready to share with your doctor.
Need telephone help fast?
Webinars
Go to the web, click to talk.
A "webinar" is a web-based seminar. The IMF's first webinar was a training
Check out the new instant Hotline telephone
session for people interested in learning about the Myeloma Manager.
access. Go to the IMF website and click on this icon
Look for more webinars from the IMF in the future. On a smaller scale,
in the upper right corner...and we'll give you a call.
14
www.myeloma.org