Wednesday, February 10, 2010

What do you want to know?

I am excited to report that people are very willing to share their MM journey! Before I start the interview process, I thought I would ask folks what questions I should ask. Below is a rough list I pulled together, but please add a comment with additional questions of interest. I want to make sure we get a good list before I start collecting responses. Thanks everyone!

When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)

What led to your diagnosis? (example: broken vertebra)

Explain your treatment history (bulleted list)
EXAMPLE:
  • 10/2009: Started RVDD
  • 2/2010: Completed 7 cycles of RVDD
  • 3/2010: Autologous Transplant #1

What has been the hardest thing about your MM journey?

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

How have you been able to stay positive and encouraged in your MM journey?

5 comments:

S. DeBoer said...

After being diagnosed... What perspective was changed the most?

Unknown said...

I would be interested in knowing if they knew what MM was when they were diagnosed and how many times they were referred before actually being diagnosed.

Karen said...

I always like to know why people chose a certain treatment (if they were given a choice, that is ... For example, to have a transplant or not have a transplant, etc.). I also like to know about the side-effects of different treatments. Also, where people are getting treated (Mayo, etc.)

tim's wife said...

I think I would be interested to know 1. If they have any other MM diagnosis in their family 2. What
doc/hospital they use if they want to share this info and 3. If they worked in a field with or were exposed to toxic chemicals prior to dx.

Unknown said...

What MM sites or blogs had you found good information from after diagnosis? I spent a lot of time on the internet after my fathers diagnosis...
Also, like tim's wife:if they worked in a field with/exposed to toxic chemicals prior to dx (my dad was a machinist..)