Northwest Multiple
Myeloma
EVERYONE NEEDS A
TOOLKIT!
As patients and caregivers, the FIGHTERS!
have learned many things which may
make you Smarter,
keep you Healthier,
and make things more Comfortable.
Do you have any comments, or good ideas or topics to add toFIGHTERS!Toolkit?
Send us an e-mail!
mmfighters@comcast.net
INFORMATION
There are several forms of Multiple Myeloma. And because there are
many forms, there are many treatment regimens. Don't be afraid about
getting Information!
-
The FIGHTERS!
strongly support the International
Myeloma Foundation. In addition to
lots of Information both on-line and available by snail mail, IMF sponsors
research and symposiums, maintains lists of support groups and members
around the world, and publishes the quarterly Myeloma
Today.
-
The FIGHTERS!
support another organization dedicated to fighting Multiple Myeloma -
Multiple
Myeloma Research Foundation. After
free registration, MMRF will send out a periodic publication, Myeloma
Focus, which has many interesting articles on medical
research, patient stories, and fundraising possibilities.
- Gilda's Club - Seattle
sponsors Support and Networking groups,
Lectures and Workshops, Social Activities at the Red Door Club on
Seattle's Capital Hill.
- If you really want wide-ranging
Multiple Myeloma information and discussions, visit the
Multiple
Myeloma List Server. This list server is
a free subscription service which allows you to take part in current myeloma-related
e-mail discussions as a participant or as a spectator. The ideas
and opinions expressed regarding all aspects of MM are informative but
should be discussed with your oncologist before any decisions are made.
Do you have questions or need more Information?
Your primary source should be your oncologist! Do not be afraid to
ask questions, get second opinions, and expect answers!
There are many chemotherapy regimens. Not everyone reacts the same
way to a particular chemotherapy and not everyone has the same Side
Effects. Don't be stoic! Talk to your doctor
and see if there is a medication which will make the process more easy
to endure.
Remember, even though things may look bad after a week of Chemotherapy,
that is about the time that things start to return to normal and
you begin to perk up!
Friends, support groups, or church
groups are very helpful during the whole multiple myeloma
diagnosis and chemotherapy process. This is true for both the person
with the disease and care givers and families. Find someone to really
talk to!
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HEALTH
Be sure to stay away from Crowds and
People
with colds and the flu; especially in the week following
chemotherapy. This is one time when "sharing" is not advised!
Natural remedies, herbs, and vitamins
definitely have a place in the treatment of Multiple Myeloma. However,
be a little cautious since some of these can work against your chemotherapy
and lessen it's effect. Consult a naturopathic physician who can
work with your oncologist and advise on the pluses and minuses of supplementing
chemotherapy with herbs, vitamins, and minerals.
Do you have an indoor cat?
If so, kitty litter is bad news for those on chemotherapy because of all
of the possible germs. Find a good friend and ask her or him to change
the litter. (Like pushing wheelchairs, this will also help identify
your good friends!)
Flowers are great pick-me-ups.
But be wary of the nasty things that can grow in the old water and be especially
careful when you dump it out.
Do not be a hero when it comes to taking your Preventative
Medications for nausea, upset stomach, etc. They work
a lot better if you take them ahead of time before you feel bad!
Chemotherapy and steroids
do crummy things when you take them and then can do crummy things again
when you stop taking them! If that happens, talk to your doctor about
tapering the steroid dose when you come off the chemotherapy. Many
different tapering themes can be used and can help reduce the bad effects.
- A caregiver should go with the patient when he or she goes for each
doctor
appointment. The caregiver should keep notes in a notebook
and record
the numbers, etc.
-
Questions which come up in between doctor visits should be written down
and given to the doctor. Answers should be
expected. If the
doctor does not give sufficient answers or says "There, there, I know
what
is best, etc", I would advise running, not walking, to different
doctor.
-
In case of emergencies, it is a good idea to have a RED
ALERT folder which has an Up-to-Date list of
medications,
blood types, and family phone numbers for both the patient and
the caregiver.
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COMFORT
Hair Loss - Unfortunately,
hair loss is a visible side effect for some types of chemotherapy.
However, there are several things which can make going bald more acceptable.
- The Comfort Cap is a
light cloth cap which is fast and easy to make. The pattern for the
cap is available, at no charge and by Fax, from Viking Company, Evelyn
Pelz, (216) 252-2366.
- Reflections of Hope is another organization which provides beautiful, classy,
and comfortable head wear for those experiencing hair loss. Visit their web site at www.ReflectionsOfHope.com.
- Some patients wish to get wigs or hats to wear during the regrowth process. Click here for a list of Wigs, Hats, and Other Hair Resources in the Puget Sound area.
Breathing while resting
or sleeping can sometimes be a problem if you have any lung involvement.
"Cuddling" a pillow while sleeping on your side may improve the situation.
Wheelchairs and handicapped parking
permits can make any excursions considerably easier.
Many public areas like airports, museums, and gardens have wheel chairs
available - find a good friend to push!
If needed, use a Cane!
It will keep you safer when you go out for exercise.
Need your own wheelchair or cane?
If you are in the Greater Seattle area, contact Bridge Ministries in Kirkland,
425-828-1431, for low-cost or no-cost help.
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Comments and New Ideas
Please e-mail any Comments or New
Ideas you think would be of value to those fighting Multiple
Myeloma or other blood diseases and we will add them to the Toolkit.
Our e-mail address is
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