Monday, April 18, 2011

Myeloma Mondays #40: Geert from Hamburg, Germany

Geert with his little duck pottery with football and helmet (almost blue and maize) in a small souvenir shop in Spain last year.

Where were you born and raised?
  • In was born 1965 in Hamburg, Germany
Where do you currently live?
  • Hamburg, Germany - I´m still living in Germany´s most beautiful town
When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)
  • 08/12/2009 – age: 44, IGG Kappa
Did you know what MM was prior to diagnosis?
  • I even haven´t heard a word about it
Is there anyone else your in family with MM?
  • No, nobody
What led to your diagnosis?
  • Nothing specific, I´ve just been weak all the time
How many times were you referred before actually being diagnosed?
  • Just one time. My doctor sent me directly to the hospital and the first blood test showed the MM indicators
Where have you received treatment?
  • Asklepios Hospital, Hamburg, Germany

Explain your treatment history:

  • 09/2009:3 cycles PAD
  • 01/2010: Autologous Transplant #1
  • 04/2010: Autologous Transplant #2
Why did you or your doctor choose a specific treatment?
  • Fortunately our team of doctors is really experienced and we have a dedicated ward for stem cell transplants. So, the decision was based on the “typical” criteria (staging, etc.) and the doctor´s experience
What has been the side effects of the different treatments?
  • No, side effects at all
What has been the hardest thing about your MM journey?
  • The first days after diagnosis when I and my family started to understand what it really means.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  1. Accept the situation and don´t start asking yourself questions like “Why me? Why in the age of 45 when the average is 71?”
  2. Find a team of doctors you really trust
  3. Learn about MM and treatment options but choose only “trustworthy” sources and discuss “your” findings with your doctors
  4. Start to fight MM, comply to the rues the doctors give you and finish your treatment plan
  5. Never quit!!

How have you been able to stay positive and encouraged in your MM journey?
  • From the first day till complete remission – With the help of my wife, daughters, family and friends. As soon as possible live your normal live even during times of chemo and during hospital stays. In times of cell phones and internet it is quite simple to stay connect when being in hospital. I´ve used internet video telephony to talk with my daughters because they were not allowed in the transplant ward. I also follow the various sport seasons on the internet. For me it also worked quite well to stay in contact with my colleagues and see progress on the projects I used to work for before and between my hospital stays. But not all these things might work for other MM patients as well. Everybody has to find his own way but I hope some of my ideas will help.
After being diagnosed... What perspective was changed the most?
  • Some things became less important but today (one year after the last HDCT/transplant and with great results) it is pretty much as it was before. Of course from time to time I think about MM but not too much. When time is limited why should I waste it by thinking about MM all the time. The thing I have changed is that I fulfilled some of my plans/ dreams. After being in Ann Arbor and the Big House I wanted to also see a game at Penn State. That´s what I did last year.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • Maybe my father during WWII
What MM sites or blogs had you found good information from after diagnosis?
  • The IMF website and on facebook and the DKMS on facebook

1 comment:

Sandy said...

This is good work that you do, letting us hear from others with MM and hearing that there are some who are having really excellent results with the STCs. I know not everyone can have that choice, or should have it, but the more we learn about the varieties of MM, the better the chances are for people to get good advice on their treatment options.