CSN Login
Members Online: 5

You are here

Great news!

CSN is getting an upgrade. All of your posts will still be here, but the website will have a new look, new features and be mobile-friendly. To prepare for the changes, the site will be down briefly at the end November. We’ll continue to provide updates as we get closer.    

Waldenstrom's Macroglobulinemia

Posts: 44
Joined: Aug 2009

I'm new to this site (been spending most my time on the uterine cancer site), but does anyone here have Waldenstrom's Macroglobulinemia? My high school buddy has recently been diagnosed with it at the age of 49 and I'm just looking for some info. Thanks

dixiegirl's picture
Posts: 1043
Joined: Apr 2006

The first time around I was told I had Lymphoplasmacytic lymphoma which kind of got lumped in with Waldenstrom's but not exactly. There is so little information available on it, it's frustrating.

How's your friend doing? Are you also a survivor?


Posts: 44
Joined: Aug 2009

Hi Beth - My sister has uterine cancer with 2 reoccurances and right now is NED! My high school friend was just diagnosed about 3 months ago and has only had 2 chemo treatments because of complications with the cancer - not so much the treatments. I noticed when reading articles about WM removal of the spleen is sometimes a consideration - but no word as to doing that with her. She also hasn't had a cath put in for chemo......and I thought that was quite unusual too, but then again.....she's really been fighting other battles with the cancer and surgery isn't really good for her right now. It's just very weird that she is only 49 with this type of cancer.....

Posts: 1
Joined: Sep 2010

Best wishes to your friend. One of the best sources of information on Waldenstrom's macroglobulinemia is at www.iwmf.com. There is a lot of info to read online, and you might also want to contact them (International Waldenstrom's Macroglobulinemia Foundation) at info@iwmf.com, or call the office in Sarasota, FL at 941-927-4963. I was diagnosed with WM in 2005 at age 52, and I'm doing fine. WM is not necessarily a death sentence, it is actually a cancer your friend just might be able to live with. Hopefully it was discovered early and he has few (if any) symptoms.

Good luck. Send a private message if you want more detailed info.

Posts: 1
Joined: Oct 2010

Hello, my friend was just diagnosed and he is 60. I would love to speak with someone who has had this a while so I can help him with side effects of treatments and his overall spirit. I know he is nervous but I also know he is listening to me as I am trying to get him positive info.I can be reached by email at ms_sues_mail@yahoo.com and would love to be able to talk with someone about this. Thanks for any help you can give, Sue

Subscribe to Comments for "Waldenstrom's Macroglobulinemia"