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January 2011 Archives : Thoughts from the "Good Patient"

G-d Helps Them That Help Themselves

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My mother was fond of an quote from Benjamin Franklin's Poor Richard's Almanac, that went like this:   "G-d helps them that help themselves."   In over 20 years of fighting my personal battle with multiple myeloma, I have found this sentiment to be very true and very important.

When thinking about dinner, we often opt for a restaurant because it's so much easier to sit down and be served than to slave over a hot stove and wash the dishes.  But, living long and living well with multiple myeloma often requires a good deal of "home cooking".

This does not mean that you need to be your own doctor.   Even for someone who is a doctor themselves, that would be a dangerous sport.  But, the reality is that even the most expert and most dedicated and compassionate doctors are only human.  And, they are taking care of hundreds and sometimes thousands of patients in the course of a year.  So, they do not have the time to focus on you in the same way that you and your family can.  And, with some hard work, you can learn enough to be a strong partner with your doctor in managing your myeloma.

Knowledge is power.  You need to know about your personal situation and you need to know about myeloma.  Keeping on top of your personal situation means getting copies of the reports about your tests (e.g., blood work, x-rays, MRIs, biopsies.) and taking the time to read them and ask questions so that you can better understand them.  You can check out a video of a presentation I made at an IMF Patient and Family Seminar explaining the basics.  You can also refer to a wealth of free publications, available online or that you can have mailed to you by the IMF.

When making treatment decisions, myeloma is not like appendicitis or strep throat.  It's more like the yellow brick road.   There is often more than one right answer.  There are so many new treatments and research findings that there isn't enough data to show that one treatment program is better than another.  And, there are often serious symptoms and side effects, like hypercalcemia (high calcium in the blood) and deep vein thrombosis (blood clots) that need quick attention to avoid serious damage.  An informed patient and/or caregiver can make all the difference.

Feel free to call the IMF Hotline if you have questions.   You can reach out to over 1700 fellow patients and caregivers on our listserv, an email discussion group hosted by ACOR.  And, you can meet hundreds of fellow caregivers and patients as well as world-class myeloma experts and IMF staff at our Patient and Family Seminars.  You can also make connections and learn a lot in a support group.  You can find a support group by consulting the IMF's worldwide directory of in-person groups.

Most importantly, remember that once you get on top of these things, managing myeloma doesn't need to be and shouldn't be a full-time job.  You've got a lot of living to do!

The Myeloma Manager Goes Multi-Lingual!

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MMPCA-montage-small.jpgI am pleased to announce the release of the Myeloma Manage Personal Care Assistant Version 4.0.2. This is the first multi-lingual version of this software, designed specifically to help patients and caregivers battling multiple myeloma track and understand their lab results. This version contains a number of enhancements and will allow users to select English, German, French, Spanish, Italian and a number of others as their working language. The software is provided free of charge and can be downloaded from our website.

We are pleased to be able to offer this software, designed specifically for patients and caregivers battling multiple myeloma. The Myeloma Manager� was developed by the International Myeloma Foundation (IMF) to help patients and caregivers deal with the growing glut of information and constantly increasing complexity of myeloma treatment programs. It runs on the user's computer and stores all personal data on the user's computer. None of the user's data is transmitted to anyone. Access to the Myeloma Manager is password protected and the data is encrypted (scrambled) so that it cannot be accessed from outside of the Myeloma Manager�.

At its core, the Myeloma Manager provides a tool to capture laboratory results and display and print tables and charts to show how those results change over time. Other features include automatic backup of your data each time you shut down the program, calendars, and graph features such as plotting multiple tests on one graph and time-scaled graphs. The software also includes real-time news feeds from the IMF web site and a reference shelf, with links to useful publications and web pages.

At this time, the Myeloma Manager is available for Windows computers running XP or Vista. It is not yet available for Macintosh, although this is planned for the future.

If you have installed a previous version, your data should transfer automatically.  If you encounter any problems, please enter a comment here or send an email to mmpca@myeloma.org.

Download the Myeloma Manager� Personal Care Assistant�

View the Webinar about the Myeloma Manager� Personal Care Assistant�.