[newly diagnosed]

needing some inspiration

by newly diagnosed on Tue Mar 16, 2010 1:57 pm

I was recently diagnosed with myeloma and am feeling pretty overwhelmed by this disease and depressed by what I'm reading about my prognosis. Are there multiple myeloma patients out there who have far outlived the prognosis their doctor gave them? How long can people live with multiple myeloma? Any words of inspiration to pick me up in these early days of my diagnosis would be greatly appreciated.

[CarolY]

Re: needing some inspiration

by CarolY on Mon Mar 22, 2010 10:35 am

I was dx 10/09 so I know how you are feeling. Remember that much of the articles you are reading may be older when overall survival was shorter. With all the new drugs and treatments, overall survival is longer. I've talked to some pts who have had multiple myeloma for 15-20 yrs. It depends on the type you have and if there are chromosome abnormalities. If an articles is older then a couple of years, I don't read it, too depressing or scary. Remember multiple myeloma is usually slow progressing, so you have time to sort out treatment options with your Doctors. When I was 1st dx, I had such bad back pain from the multiple lesions I rapidly couldn't walk without a walker, and was using a wheelchair. After 6 cycles chemo, no back pain, not even a cane, so the meds do work! Good luck, Carol Y

[kaygcromie]

Re: needing some inspiration

by kaygcromie on Mon Mar 22, 2010 4:58 pm

I was diagnosed in November 2003 and I am doing great. I hate statistics and I don't pay any attention to them at all, do yourself a favor and don't read any and ignore anything dealing with survival rates. The diagnosis of Myeloma is overwhelming enough, you need to use your energy to fight the beast. Myeloma treatments have increased by leaps and bounds in the past several years, there is so many drugs and treatments available to all of us. More and more Multiple Myeloma is becoming a highly treatable disease and hopefully someday it will be considered a chronic disease. I run a multiple myeloma Support Group and we have 1 member who is a 19 year survivor and the other member is a 18 year survivor. Family, friends and a caregivers are so very important to all of us and don't be afraid to lean on any of them and ask them for help, you will find out they want to help you. When you have appointments make sure to bring another set of ears with you to your appointments, sometimes when the doctor says something you find yourself fixating on that and don't hear anything else he might be saying. Have the other person bring a pen and paper. Hang in there and you will get through this and there is so many of us around to help you.

[newly diagnosed]

Re: needing some inspiration

by newly diagnosed on Thu Mar 25, 2010 11:14 am

Carol and Kay, thanks so much! It's so helpful to hear from other myeloma patients, both ones who have just recently gone through the shock of diagnosis and those who have survived this for many years.

It definitely raises my spirits to know that there are people out there who have survived myeloma for 15+ or even 20 yrs. I didn't know that was even possible.

Is progress really being made so fast that articles that are a couple of years old are out of date and not worth reading? If so, hats off to those making the advances in myeloma treatment.

I really appreciate the advice. Keep it coming.

Best wishes to all of you for good health!

[NStewart]

Re: needing some inspiration

by NStewart on Thu Mar 25, 2010 3:37 pm

Yes, the advances in treatment of multiple myeloma change very quickly. The drugs that are the frontline of treatment today weren't available 2 years ago. It even sounds like the use of stem cell transplants may not be the standard of care in the near future with the development of such good chemo alternatives that don't interfere with your life too much. Find a Multiple Myeloma support group in your area. They really give you lots of information in sound bites that you can manage. You also will meet people who have been living with this diagnosis for many years and who look really good. You also will meet people who are at the same stage of diagnosis and treatment that you are who you can share options with.

When I was diagnosed in '08 my oncologist told me that this was a cancer that was a chronic condition. There isn't a cure, but there are treatment protocols that make it so that you can live a fairly normal life for many years. He is always very upbeat and optimistic during my appointments.

Hang in there. You will learn about this diagnosis as you go along. Read what you can.

[Don]

Re: needing some inspiration

by Don on Thu Mar 25, 2010 11:54 pm

I was diagnosed 6 years ago with smoldering multiple myeloma at the age of 47. My general fitness had declined as I had gotten older and I used the diagnosis as positive motivation. In the past five years, I have ran 12 half marathons and lost 35 lbs. My lab results show no progression in 6 years.

[Linda]

Re: needing some inspiration

by Linda on Thu Apr 01, 2010 5:56 pm

I just wanted to tell you that there is lots of hope. At my multiple myeloma support group people have even talked about someone who is alive and well 31 years after diagnosis. I was diagnosed with multiple myeloma in 2008 and the information you can read about on the internet is already more hopeful. If you have not met with a multiple myeloma specialist already, I highly recommend it. The very best of luck to you.

[Matt]

Re: needing some inspiration

by Matt on Mon Apr 05, 2010 11:58 pm

I was diagnosed in April of 2009 at the age of 44 and here are a few things I learned:

1: The average age of a person diagnosed with multiple myeloma is around 70. This skews the survival data. As a younger person, I have to look at statistics of people in my age group. I can withstand a more agressive course of treatment than an older person.

2: Newer drugs, combinations of drugs and other factors have increased the percentage of complete responses.

3: Nowadays there are many incentives for drug companies to develop and test drugs for diseases which a smaller number of people get. Drugs get fast tracked when they are given "Orphan" status. This means that many drug companies will conduct clinical tests for multiple myeloma before they test them for other cancers.

4: Multiple myeloma may be the cancer where the most advances have been made in the past decade. Many researchers believe that there will either be a cure within the next five years or it will be considered a chronic condition.

[Jay2010]

Re: needing some inspiration

by Jay2010 on Tue Apr 06, 2010 11:25 am

I am 45 year old male live in washington DC area and have been diagnosed with multiple myeloma on March-19, 2010. We are getting second opinion from Hopkins and third from Dana Farber. What have been said on this thread is true, there is lot of hope. A good friend of mine gave me two books 1. My journey back to life (Lance Armstrong) and what to eat when you have cancer. I have been reading both and found them very useful.

At the same time, I get very imotional when I am playing with my kids, talking to my wife. However, I am learning to slow down a bit, pray every morning and keep possitive thinking.

I am trying to find a support group in DC area, I am also trying to find out how much I will be able to work after the induction treatment etc because I don't have disability insurnace.

Regards,

Jay

[Julie Shilane]

Re: needing some inspiration

by Julie Shilane on Tue Apr 06, 2010 11:52 am

Jay, you can find a list of support groups on the following two sites, there's a section for D.C. groups:
International Myeloma Foundation
Leukemia & Lymphoma Society