You have been diagnosed with multiple myeloma. You and your family are shocked, scared and shaken. The initial reaction--by you and your doctor--is to start treatment immediately.
STOP! Time is rarely
of the essence following a multiple myeloma diagnosis. Multiple myeloma tends to be a slow moving,
plodding yet unstoppable disease. A few
hours, days or even weeks are unlikely to affect your overall prognosis.
Even if you have already started treatment, it is never too
late to re-evaluate your treatment plan. Have you considered a second opinion? Why are you and your doctor doing what you are doing? What are your expectations and goals? When is it time to change course, continue
with your current treatment regimen or watch, wait and do nothing at all?
These are big decisions--and very difficult to make on your
own, even with the help of a caregiver.Unlike some other cancers, myeloma patients often face overwhelming
treatment options. Most work at
first. But what then? Do you undergo an autologous stem cell
transplant now, or wait? If you do
decide to transplant, do you start maintenance therapy soon afterwards or
wait? When do you resume treatment if
and when your numbers start to rise again?
And which drugs should be used to best slow your relapse?
By assembling a comprehensive health care team, you can
surround yourself with experienced, qualified health care professionals to help
you make the treatment choices which are best for you.
Think of yourself as the CEO of a major company. Or a general contractor of a building
project. Are you into sports? How about acting like you are the owner of a
professional sports team? Or the
president of the PTA?
Regardless of which leadership style you emulate, remember
that powerful leaders in important positions surround themselves with
experienced support staff. You should do
the same. Here are the positions you
need to fill as you create your winning support team:
· Primary Caregiver. This may be the most important position. It can be a spouse, family member or
friend. While it is best to if one
person fills this role, it can be done by a combination of people. Your primary caregiver is responsible for
reminding you to take your meds and help you get to and from medical
appointments--and to take careful notes and help you ask questions at those
appointments. They are also there to
provide emotional support and help you coordinate your health care team.
· Multiple
Myeloma Specialist. This can be an
oncologist or hematologist, preferably from a regional or nationally known
cancer center. Once you decide which
treatment course to follow, this specialist becomes a consultant, keeping your
team on course, or helping you make course corrections as necessarily.
· Medical
Oncologist. This is the doc you see
regularly. He or she consults with your
specialist of choice, working together to make your day-to-day treatment
decisions.
· Oncology
Nurse(s). Let's face it; oncology nurses run the show! They keep track of prescriptions and remind
the doctor about day-to-day details.
They are the ones who administer your IV and help minimize treatment
side-effects. Oncology nurses coordinate
your labs and make sure you are doing OK.
In my next life, I am going to be an oncology nurse! These brave, skilled women (and men!) have
the difficult task of working directly with the patient day to day. They rock!
· Internist
or Family Doctor. Don't let cancer
dominate your entire health care world. You still need a regular doc to handle
non-cancer -related issues.
· Support
Group. Multiple myeloma support
groups share all kind of details and data. Learn how other patients cope with
side effects. Learn what other patients
are using and why. Your support group
members will become like family. They
understand what you are going through.
· Family
and Friends. Your friends and family
want to help--they just don't know how--and you can't expect them to read your
mind. When they offer to help, try and
assign them small, simple and achievable tasks.
They will feel good about themselves--and you will feel better knowing
you have people surrounding you who love and care for you.
You don't have to stop there! Add a nutritionist and/or naturopathic
MD. How about a massage therapist or
acupuncturist? Try a physical trainer or
therapist. You can make your medical
team as large or small as you like. Keep
it simple or expand it as you go--it's up to you--you are your own team's leader!
Of course, you won't be able to build a winning medical team
overnight. It may take months or years
to develop. And, like a good team owner
or coach, you may decide to make changes as time goes on. Remember, winning owners change coaches and
team personnel as needed. Team chemistry
is important. If someone isn't
contributing, or can't get along with other team members, find someone who can!
Good luck building your winning health care team! Come on--I know you can do it--your life may
depend on it.
Feel good and keep smiling!
Pat
You might also consider finding a nurse navigator. This person can help you coordinate your team, your second opinions, your support services, and more!
I could not agree with you more, especially about the Oncology nurses. They have been the key to coordinating my testing, transplants, and keeping up the ongoing information to me and my whole support team. Thanks for continuing the blog and reinforcing those things that are important to patients like us.
I became ill in 1997, but was not diagnosed until a year later. A kidney biopsy found amyloid, so finally the oncologist did a bone marrow biopsy and found multiple myeloma. I was given VAD, which caused ileus, severe neuropathy, and a locked jaw. The ileus was excruciating, and nearly killed me. Then, I had bacterial pneumonia - 3 weeks in cardiac care unit. I could go on about the mistakes that were made, but eventually I endured a stem cell transplant, even though my kidneys were too far gone. The experience was incredibly difficult, and unexpectedly, I survived! Eventually, my kidney function returned, so went off dialysis. I have been myeloma-free for nearly 14 years. I would love to be in contact with others with similar survival stories. Pat, I live in Weeki Wachee too!
Roz- I'm sorry that I didn't reply earlier. For some reason, I haven't been getting email notifications when the site receives comments. Hope to see you at our next support group meeting! We meet the third Wednesday of each month at 6 PM. Behind Oak Hill Hospital. Millennium provides a great meal...
Dear Roz,
What a story! But you survived and it gives newly diagnosed patients positive hope.. I went through 6 months, 5 MDs, 9 body scans about 10 gallons of blood, finally an excellent oncologist performed a bone marrow biopsy , he could tell mybbones were soft when he inserted the needle. I am 78 years old but lived a very healthy life style / w agood diet. My father passed away at 97. , mother @ 86.. Last June my family internest said for a man my age I am in prefect health. Then the back pains started. A CT scan showed 4 fractured vertebrae. I was being treated for osteoporosis and injected Forteo every day. & pain meds which I am still taking. I was seriously thinking of travelling to Oregon and request the utheneasia RX. Back pain was unbearable. Very high calcium levels in my blood was the indicator. My family MD sent me to an oncologist and here I am, starting my 3rd month of Revmilid, dex, and monthly Zometa. I am able to stand and walk the dogs. Most importantly I have an excellent care giver, my wife of 39 years who is a 5 bypass heart survivor. Without her it would have been the Oregon RX.
I am sorry for the long response to your mail but it was a good cathartic for me. It is 4:30 am . And I am on my cell phone. Again, you story gives me hope.
Thanks.
Bob Adamski