Steve Kirsch's Waldenstrom's Macroglobulinemia links

More on my WM
Steve Kirsch health update
Kirsch Waldenstrom's Macroglobulinemia Diary: tracks my blood counts over time
Waldenstrom's macroglobulinemia: Drug options: talks about lots of drugs and their current status
Q&A on treatment: Questions I had (many of which are still unknown)
Case histories: Case histories of people with WM
How to cure WM: My initial thinking on how you get to a cure
What the math tells us: Some preliminary thoughts I had on how the disease operates
My treatment option analysis: pros and cons of the treatment options that were available to me
CPR treatment details: misc advice I have on CPR therapy which I decided to discontinue
Project Ideas: a list of things to consider funding
My treatment plan for WM: Here's how I originally planed to treat my disease and why
Why Rituxan takes so long to kill Waldenstrom's macroglobulinemia: What we know about how Rituxan works
Low dose Rituxan: This is my most recent thinking on how to best treat this disease today
Kirsch Laboratory for Waldenstrom's Macroglobulenemia 2010 Annual Report: Research I sponsor at Dana Farber which also has a great description of WM and how it works

Waldenstrom's Macroglobulinemia talk by Steve Treon (February 5, 2012)

Dana Farber Tissue Banking Study (January 28, 2012)
If you have WM, please enroll in this study. The study involves filling out a consent form, questionnaire, and sending some extra tubes at your next blood draw and bmb (you'll be sent a kit for this). NO EXTRA pokes, BMB, etc are required. So there is no pain at all; just a few minutes of your time.


  1. The four forms you need are below this link. You'll get another form directly from them.
  2. Print out 2 copies of the consent form, sign both, and mail the two signed originals (the full form, not just the signature pages) to: Irene M. Ghobrial, MD 44 Binney St, D1B30 Boston, MA 02115. One of the originals will be signed and returned to you. The other they will keep.

  3. Fill out the questionnaire on-line, save to a file, and email the file to: You can also use that address if you have any questions.
  4. You'll get a kit for the samples to send back.
  5. Please note - they are unable to use any information provided on the questionnaire until they receive an original, signed consent forms (one for the patient, othe for family).

Description: description.pdf
Consent forms: consent.pdf and consent2.pdf (for family members)
Questionnaire: questions.pdf

Articles by others about my WM
Steve Kirsch’s Tough Battle: blog posting by Wall St. Journal reporter Kara Swisher
Entrepreneur's funds shift to rare cancer : Front page story in San Jose Mercury News on Oct 5, 2007

Medical research
How to cure a disease
Success models for curing a disease

Opinion pieces
The real enemy isn't the terrorists: my op-ed about government funding for cancer research

Waldenstrom's info
International Waldenstrom's Macroglobulenemia Foundation: Join the IWMF-talk list is highly recommended...the best single thing you can do.
Research Fund for Waldenstrom's -- Dedicated to a cure
Waldenstrom's Macroglobulinemia Program: at Dana Farber


Medical technical info
Waldenstrom's Macroglobulinemia basic information
Waldenstrom's Macroglobulinemia technical papers from DFCI
International WM Workshop papers
Diagnosis And Treatment Of Peripheral Neuropathies: one of the most common WM side effects
Treatment for Waldenstrom's macroglobulinemia -- Chen 15 (4) 550 -- Annals of Oncology

To make a donation to cure the disease
You can make an online donation right now using
the button to the left or this link:
Kirsch Fund for Waldenstrom's Research

Other sites
Kirsch Foundation: the foundation I started
Steve Kirsch home page: my personal home page